**I’m so sorry I left you hanging after my last post, I started writing this a few days ago but then we traveled back home & since then have had a really hard time both physically & mentally, when that happens I kind of have to shelve blogging and go into survival mode.
Wow, being at Mayo was seriously the fastest & yet somehow longest week I’ve ever experienced.
I’m going to make this post quick for a few reasons, one I’m excited to get back to posting about other things that I really love & aren’t all a bunch a medical jabber & two, what I really wanted to convey were the feelings one goes through during this process, I’m hoping by talking about all of the ups & downs it can be helpful to you, even if you’re hard time isn’t necessarily about your health.
Yesterday’s appointment with Rheumotology went well. They were incredibly thorough & even took the time to talk with P & my Dad at length to gain their perspective of how I’ve been the last two years. Their conclusion wasn’t too far off from what we already knew. I definitely have an ‘athritis causing inflammatory auto immune disease’ but it hasn’t show itself enough to know which one it is. Could be RA, Lupus, Sjogrens, Graves…who knows, I’ll just have to wait until it shows itself more specifically. The bad part of that is I still don’t have a name, without a name you can’t easily tell people what’s wrong with you when they ask. However, without a name you also can’t drive yourself bananas googling it on the internet so I guess that’s good. The other good news is that the medication I’m already on (plaquenil) is what they would suggest for any of those diseases. So even though we don’t have a name we have a treatment & that truly is the most important piece to the puzzle.
The Rheumotologist also confirmed the Fibromyalgia diagnosis. Fifty percent of people with an auto-immune disease will develop Fibro along with it. (you only have a 4% chance of having Fibro if you don’t have an auto immune disease)
Fibromyalgia is a bitch.
I’m sorry about the language but seriously, I HATE HER. Fibro has caused me to develop TMJ, PFD, muscle spasms, muscle atrophy, IBS & restless legs. What a whore.
So I really thought after that appointment that was going to be it, it wasn’t what I was hoping for but it was something I could eventually make peace with. Turns out however that the best answer I was going to get was yet to come…
After Rheumotology my doctor had scheduled some ‘Autonomic Testing’. My very limited medical knowledge tells me that your Autonomic System regulates most of your subconscious functions…blood pressure, digestion, temperature control, heart rate, sexual functions & a few other things.
Before my trip to Mayo I was having a lot of anxiety about what to expect so I did what any rational person would do…I googled it. I stumbled across a young woman’s blog who had documented her trip to the Mayo Clinic in Rochester. She seemed to have a lot of the same symptoms I had & at the end of her visit she learned that she had a disease that had affected her Autonomic System & it was just wreaking havoc on her. I had never even heard of your Autonomic System before but after reading her experience a light bulb went off & a little feeling in my gut said, ‘this could be a BIG part your problem’.
I’ve been having a lot of problems with my blood pressure dropping & starting to black out so the abnormal blood pressure symptom immediately caught my attention. A week ago the loud ringing I get in my ears when I’m starting to black out even woke me up during the middle of the night. I didn’t even know you could black out in your sleep. Beyond bizarre. I’ve also noticed that lately if I get cold I can NOT get warm & on the other hand sometimes, very quickly & for no apparent reason, I’ll get crazy hot & start sweating all over. I figured it had to do with my ‘issues’ & never thought it could be something else until I read about blog girl’s experiences. I also am never hungry. I’ve lost 14 pounds & hate the way I look. I try to eat because otherwise I feel like crap but after a few bites I’m uncomfortably full. Autonomics handle digestion…interesting. Also remember when I spent 3 days in the hospital because I had lost feeling in my legs, hands & face? The best the hospital neurologist could tell me was that it was from a B12 deficiency. (on a side note I totally believed him at the time but while I was gathering my records for Mayo I noticed on my hospital labwork that my B12 was in the normal range, I’m wondering now if he was just fishing for an answer because he didn’t really know. Just another reason people, you cannot always take one doctor’s word as gold!) Because of all of that I was sure to tell my Mayo Primary Dr that I wanted to do the Autonomic Testing. (only a handful of places in the country have the capabilities to test for it) She agreed although she doubted that was the problem.
I did the Autonomic Testing 6 hours before our flight was to leave to take us home. Craziest testing I’ve EVER done, they basically try to make you faint, you can read more about it here. Right before we left for the airport I had my last meeting with the primary doctor to go over the trip. She reiterated what the other doctors had told us & what their recommendations were for when I got back home. The one thing she didn’t have yet however were the Autonomic Testing results. UGH! She promised to call me if they were abnormal & if I didn’t here from her then I could assume it was fine.
We packed up our stuff, loaded the girls into the rental car & made our way to the airport. As we were sitting by the gate getting ready to board my phone rang. It was the Mayo doctor. I felt like a boy I really liked but wasn’t sure was going to call actually did. She said results were abnormal & lead the doctors to believe I have a small fiber neuropothy. I didn’t have a lot of time for her to explain but basically a disease had caused my nerves to malfunction & not regulate my body the way they should, it was also most likely the reason for my awful pain in my legs & feet. SFN are relatively rare & often go undiagnosed, I’m extremely blessed that I happened to be at a hospital that could diagnose it, I’m certain that if I hadn’t gone to the Mayo Clinic I would not have been diagnosed correctly. (in case your curious SFN are often either genetic or are a result of your body experiencing an infection or an auto-immune disease. When I told my local rheumotologist she said there’s a lot of new research that connected Fibromyalgia with SFN as well)
I got off the phone & told P, he was so funny, his reaction was exactly like mine, “YAY! That’s great!! Well, I mean, not great, but so happy we have answer!” I immediately called my mom & dad to tell them the good news. Weird right? Somehow when you’re sick for a long time & have so many doctors brush you off as being ‘anxious’ or a ‘hypochondriac’ to finally get a concrete black & white answer is the best feeling on Earth. For a little while at least. Now that I’ve had some time to digest & read more about small fiber neuropathy it’s made things really real. Really real that it’s not easily treated. Really real that there is no way to reverse the damage. Really real that often it gets much worse. I don’t know, I thought I had accepted the fact that I had ‘something’ that I was going to be dealing with the rest of my life but for some reason I feel like I’m going through all of those emotions for the first time. It kind of feels like grieving maybe?
I’m sure this is quite boring for lots of you or you’re tired of hearing about it but for those of you who always leave me the sweetest comments & encouraging emails or your stories about difficulties with your own health…sigh, thank you doesn’t even begin to convey how it makes me feel. It truly makes things easier for me.
So what now? I literally just got off the phone with my pain management doctor because last night was the 6th night in a row that the leg pain wakes me during the night & I have to go sit in a hot shower to get relief & while I wait for my next dose of pain medication to kick in so I can go back to sleep until it wears off 3-4 hours later & I have to do the whole thing again. Not sleeping makes me a not kind person. That’s at the top of my list for figuring out. I have a neurologist appointment this Thursday & then need to find a GI doc & physical therapist to get started on building some strength. It’s going to be long road & I’m not feeling the most confident but as Glennon from Momastery says…
There is nothing better than finding answers and I’m so glad you’re getting the ones needed to help out you on the road to recovery! Continuously sending good thoughts and prayers to you and hope you are enjoying the snow day here in MoCo!
Natasha,
I am nervous leaving this comment because I am not the sort of gal offers unsolicited advice…it feels absurd. I have severe RSD which resulted in my being stuck in bed, a wheelchair, or a surgery center for a year. Basically, I started out a few-miles-a-day runner and ended up permanently handicapped. The reason I am sharing this private information is to offer some background to the medications I will tell you have helped. No wild “overnight cure” claims. I just have a lot less of the raw and shocking pain which used to be nearly constant.
Like you, I wanted off narcotics-desperately! They are now what my doctor calls “rescue drugs”. I only have to use them if a day gets really out of control.
The meds my doctor put me on are Cymbalta and Topamax. He explained that the nerves send the pain signal three ways and Cymbalta takes care of two and Topamax the third. Unless I have it backwards and inverted…eh, sorry. So, instead of the narcotics wiping out brain activity(pain receptors?), these medications seem to slow down the pain signals being sent out. It might be worth asking your doctor about.
Anyway, if this is helpful at all- great! If it is weird, hit delete. I just happened upon your site on your first day at Mayo. It felt wrong not to offer help, yet extremely odd to make suggestions/share medical history on a mommy blog. Yikes!
Oh-P.S. I forgot to mention those meds are used for some seizure and mood disorders too, so I’ve heard that can be a complication because it scares some patients off. I was more scared of narcotics…
No, not weird at all! Just the opposite, super helpful!
First I’m so sorry you’ve had such a hard time, I’m really glad you’ve find the right cocktail of meds but I know how tiring that process can be. I tried Cymbalta on it’s own & had an awful reaction to it, it was crazy. I’ve never heard of Topamax though, maybe that could help! Right now I’m doing Neurontin & Plaquenil but my neurologist said it’s almost never one drug that works but a cocktail of different ones, I’m curious to see what she recommends next.
Natasha, I am SO happy for you that you finally found an answer! I have had a lot of unexplained medical issues over the years too. Reading this blog makes me feel like I am not crazy! I know exactly what you mean about doctors labeling you with anxiety or being a hypochondriac. I hope that you are able to find comfort and relief. Keep fighting! (PS- is it weird that I talk about you like we are friends?!)
If it is weird than I must be weird too because I totally think of you as a friend too! (;
I commented yesterday on your last week’s blog post about something my mom always says & I think it’s fitting for this one too!
She has always said ‘You are where you are meant to be.’ So true in your case too! Mom’s rock! It doesn’t always make sense, but it’s so true.
So glad you got a diagnosis & will be able to figure out a game plan to deal with it. Good luck!
So glad that you found some answers!! I’ve been following along for some time now and I see that you were trying a Paleo diet. I’m going to guess you were hoping it would help you feel better. I’ve also seen a lot of information for special Autoimmune Disease diets over at Paleomom.com, they seem to help a lot of people. Just sharing the information in case you’re up to give it a try. I hope from here you only continue to recover and improve. I wish you well!
I’ve been following your story for awhile and I’m so happy that it seems you have found an answer. In a medical field myself (well student-to-be-medical-field), I love hearing stories like yours. Stay strong and you can get through it! Good luck with everything to come.
Totally agree with your hubby – it is great news! Some direction! Glad you have found some answers in Jacksonville, we’re all hoping for even better news for you as treatment plans come into play. I know you’ll find the one that’s perfect for you.
Also heard your husband talk about it on the radio this morning and I teared up because wow, that man loves you to the moon and back. His words about you are so kind and loving; what an amazing family you have!
He does, I listened to the ‘family meeting’ online today & it made me tear up. These last 6 months of our marriage have made me appreciate & love him more than entire 6 years we’ve been married. He’s quite wonderful (:
I’m glad you finally have some answers. I really wish you and your family the best. I’m sure it’s tough on them too but most importantly I wish you strength to handle all of this. You’re a strong woman and you bring me happiness with your blog no matter what the post is about.
Thank you Merari, your sweet words mean so much, you have no idea (:
Sure, it’s “weird” to outsiders to rejoice in definitive dx’s, but when you’ve been suffering for so long, that kind of information is gold in word form. I’m glad that you can now move forward and start formulating plans on how to manage this. Don’t feel bad for sharing this-just like the other girl that blogged about autonomic testing- you never know when you might be helping someone by telling your story. I’m excited for you to get in with a good PT- it really can be life changing. Put in the hard work, as you always do.
Natasha,
I didn’t know about any of the issues you’ve been dealing with until I heard your husband speak of them during the “family meeting” this morning. I honestly am so glad to hear that, although you’ve still got a rough road ahead of you, at least now you have an answer and can start receiving exactly what you need- where your treatment is concerned. I’ve only mildly followed you via Twitter and Instagram but vow to also be a faithful reader of your blog, from now on. It’s obvious that you’re a wonderful mother and wife and an incredible soul, so I wish nothing but the best for you. Thank you for sharing your story with us!
Cheers,
Jaime
Oh Jaime, thank you for your sweet words, you have no idea how much it means… (:
Hi! Reading your blog post was like reading my story. I am 34 and was diagnosed with fibromyalgia at 21. I have been where you are and my husband and I searched and searched for answers. I finally realized it was going to drive me crazy and decided to live my life while trying to control the symptoms. You are right. It is grief. You go through all the stages, disbelief, numbness, denial, anger, and then acceptance. It is hard. Have you tried neurontin? It has helped me a lot. I hated lyrica, so neurontin has been a better option for me. I also take a pain med ( hydro condone at this point, but started many years ago with ultram, ultracet, and then codeine before the hydrocodone). Also take zanaflex (muscle relaxer that is much better than flexeril). Baclofen used to be awesome for me, but had to stop when we were trying to have a baby. Hang in there! Try to enjoy life in little spurts and find things that make you happy that you can do even when you are in pain. For me that is knitting.
That’s so funny Kimberli, I just started Neurontin yesterday (tried Lyrica previously but it didn’t make a big difference) & also was given Zanaflex for muscle spasms & Hydrocodone & Nucynta for break through pain. I HATE being tied to all of these meds but for now it’s the only way to get through the day…
I’m so sorry you’ve been dealing with Fibro from such a young age, that’s brutal but I’m truly inspired that you’ve found a way to continue your life in spite of it. (:
An answer, albeit small, is such a huge accomplishment. Hope this long road finds more light along the way. Good luck!
Hooray for finding answers! Your strength continues to amaze and inspire all of us here in the blogosphere, and hearing that you have answers, direction and treatments in hand has us all cheering and doing “happy dances” for you. Keep fighting and healing and being the fabulous person you are.
(: …’happy dances’ love that!
Natasha,
I’m so glad you found some answers..
6 months after my husband and I got married my husband started having symptoms to do with memory loss. One day he couldn’t even remember where we lived or how to get home.. Then he had tingling in his Feet and hands and lost color to his feet and hands.. We went 2 years of not knowing what was going on… I lived in worry for Vinny and also my future.. Vinny was in the Marine Corps at the time so we went from appointment to appointments on bases all over VA and MD.. until finally in April of 2012 he was diagnosed with Lupus..
LIke you .. I had done my research and was so happy to find the answers.. but we still had another Obstacle in front of us his memory loss.. After almost another year later … Keeping spreadsheets, Notes, watching You tube Videos we realized he had Partial Complex Seizures.. The tingling we found out was Raynauds Syndrome.. The Seizures and Raynauds are effects from the Lupus..
All of the symptoms your are feeling could be linked to 1 main Disease.. I will pray for you and your family that you find answers.. Support is key and having a positive attitude.. I hope you find your answers..
Danielle
Wow Danielle, that’s crazy! You know sometimes I think it really might be even worse for the spouse of someone sick…all of the worry & having to pick up the extra responsibilities your sick spouse just can’t do…my heart goes out to you just like it does to my husband. You guys are what hold us together!
In my gut I really do believe that in the next few years we’ll find out it’s Lupus or a similar auto-immune disease and that all of this are symptoms of that but unfortunately the only thing that they can diagnose.
Best wishes to you & your hubby!
I just stumbled upon your blog and read this post and almost started crying because I can relate. I was having similar symptoms such as weird numbness in my legs and feet, feeling as if my muscles in my legs were tearing while trying to walk up stairs, passing out, stomach issues, hot flashes to the point that I would wake up soaking wet, freezing and not being able to warm up, etc. Doctors kept telling me that it was stress and anxiety but nothing was medically “wrong” with me. It took me two years to finally find a doctor who listened and a diagnosis. It is strange to feel relieved to hear I have an autoimmune but I finally had something to work with…a direction. It’s been two years since I had my thyroid removed and things aren’t perfect with me health wise but so much progress has been made! I hope that you are able to get a full diagnosis and treatment. I know how emotionally and physically draining it can be. Stay strong and keep up the good fight! 🙂
Wow Ashley, we could be long lost twins!! I’m so glad you found the blog & that you could relate. From my side let me say thankyou for commenting because hearing someone else go through the same thing is such a comfort (:
Man that’s crazy – a rare genetic disorder. Mind blown! Glad you have some answers Natasha that’s the first breath of fresh air. Best of luck and let the journey and healing begin! Take Care *hug* -Iva
Wow. I am sorry for all the pain you are going through, but happy you found an answer Good luck with your treatments. Hugs. Lisa
Very interesting!! I have not had Autonomic testing but I’m almost certain mine will be abnormal. I have the same thing, some kind of inflammatory arthritis(and Fibro and MS) but we don’t know what kind of arthritis I have yet either (symptoms still have to manifest) so I just tell everyone it’s inflammatory arthritis. Thanks for the heads up about the Autonomic testing, I’m going through a terrible spell right now. My arthritis is very responsive to steroid but this time it’s being stubborn. I’m into my sixth day of steroid and still feel like crap. I’ve had a spell since Christmas. Also, just an FYI, stress really seems to bring my spells on so I try to avoid the drama at all costs. You might want to do the same. Best of luck and take care!! 🙂 I think it’s great news that you are finding out some results, not knowing is the absolute worst. I went through that for eight years.
Natasha,
I too, believe it’s always better to know what you’re dealing with than not. I was diagnosed with RA exactly 10 years ago and fibro about three years before that. I just have one small thing to suggest and it might not help because of this new nerve thing they’ve discovered. Once I was diagnosed with fibro they put me on a low level of the anti depressant Elavil, to help me sleep. Sleep is key. If you are not sleeping then your body isn’t resting. Also, the spice turmeric is a natural anti inflammatory. I take it in capsule form and basically it has replaced Advil in my life for it and it’s not bad on your stomach. Just thought I’d pipe in with those — good luck to you and your family. I know how hard this is for you.
Those are good tips & I will def try the turmeric (I think I heard dr oz say that once too!) & will ask my Dr about Elavil…sleep is just so key
Hello! I’m so sorry to hear that you are experiencing all of this. In April 2009, I was diagnosed with MS with my first relapse 1.5 years prior. Last April, I was diagnosed with RA. My MS is great – I’m extremely lucky. I thought I had hit the jack pot until the pain started…. My fingers, my feet, my toes, my left shoulder, hips, all over – it’s awful. I have been very lucky with the fatigue but the joint pain has wrecked my world and my positivity. My blood work is usually negative but my rheumatoid factor was extremly high but what do ya know – there is no sure test for any of this stuff it seems and it’s all a guessing game. My symptoms are pretty spot on for RA though unfortunately. I started my chemo pills 14 weeks ago and I feel like they might finally have kicked in. i feel better but having said that, I will always have pain and my life will never be the same and it breaks my heart. Adapting to a new kind of life – one unlike most people will ever imagine or understand has been VERY difficult for me. I dont have children, so I know it’s even harder for you. My heart breaks for you. So… the things I have heard (and I’m sure you have already as well) – going gluten free (eh, not sure how I feel about this yet), drinking tart cherry juice every day…. turmeric as someone mentioned above, melatonin does WONDERS for me… I’ve heard ginger… I dont find a difference. I live on garlic to help my immune system. I’ve been very lucky with all of the meds I’m on – that I havent even had a cold since last April. Kind of crazy. I think everyone is different and auto – immune issues are SO insanely individualized, they just can’t say anything for sure.
I wish you the VERY best of luck and I have dealt with all of this for some time. I’m more than happy to help you and walk you through anything you need. We have to stick together b/c NO ONE else understands. I have been struggling with my support system. I’m here if you need someone.
My view on fibro – I think it’s obviously real. Very real. But I think they will find that it’s probably something they havent remotely figured out yet.
Oh Corinna, I’m so sorry you’ve had to deal with that. I must say though, your words hit so close to home. I don’t know how to explain to people who haven’t had chronic pain what it does to you mentally. At my last pain management dr visit I told him what the mayo clinic diagnosed me with and he said, “Neuropathy pain is something you’re going to deal with the rest of your life. You also can’t take pain medications for it every day because then you’ll build up a tolerance & it won’t work, you’re going to have to learn other ways to deal with the pain & accept that it will always be there.” That’s the hardest part to swallow, that the pain will never go away. I’m so scared I’ll never have a day where I can just play with my girls or walk around the mall & not have constant twinges of pain that takes my attention off of what I love in my life. I know I’ll find a better way to deal with this & I’m sure it will become second nature & I’ll probably forget what life was like before the pain but for now I’m just not there yet. It’s still sad.
Ya, it’s what I’m dealing with now as well. I’m not doing so well with dealing with the people in my life. I can’t blame them for not understanding b/c you truly have to feel the pain to know what it’s like. It’s invisible, therefore, I know no one gets it. I walk around with my make up on and my head held high but I’m dying inside. When I have tried to talk to my friends about it, I havent remotely gotten the response I expected. At first, I didnt think they knew what to say and I gave them the benefit of the doubt. Now, I have realized I just don’t have time to worry about it. The pain takes over and you can’t care about everything else as much as you used to. It’s something I just can’t explain but I’m mentally worn out. I’m truly the least selfish person I know. I’m constantly worried about everyone else and doing everything for everyone else but now, I just can’t. It takes everything I have to get out of bed in the morning with the stiffness I experience and I just ‘finally’ can’t worry about anyone else. And I’m very disappointed in people 🙁 Sometimes I wonder what would need to happen for them to realize how bad it really is. That EVERY single thing I do with my hands in particular -hurts – brushing my teeth, taking my dog for a walk, making my bed, opening a jar from the fridge, chopping veggies, typing, writing, – washing my hands 🙁 Would it take a hospital visit? Or a visible disability for them to see that it’s horrid? That they take everything for granted? I promised myself I would never become bitter and I’m usually Positive Pam. I’ve been yelled at by my friends for always being so positive and now I am so scared I’m going to let this take me down. I’m trying not to. The steroids are helping but how long can I really stay on them safely? My chemo did not help. i got off the steroids after I posted this comment and I found that the pain came back the same amount as before and because I have MS, I am unable to take all of the biologics that you see commercials for (humira, etc). I can’t drink bc of the chemo. I can’t exercise much due to the pain. I feel like everything has been taken away from me.
I’m not sure if I missed this in your blog but are you taking any meds at all? or just on an as-needed basis so you don’t build up a tolerance. I’m finding I do with my anti-inflammatories.
I hope you are feeling somewhat better. Your posts look great with all of the V day stuff. I can only hope that means you are feeling better but I know better. I make homemade cards and since my hands hurt so much, I wonder if people think ‘how can she still do that if her hands hurt’ but I dont want to give it up. It’s my hobby – that and scrap-booking so I just try to push through the pain. I have to live.
PS – Totally going to work on my peek-a-boob book this week!!!! HA! Thanks for the idea and I have a silhouette 😉 Here’s to you pretty lady. *Cheers
Oh Corinna, I’m so so incredibly sorry. Boy do I know EXACTLY what you mean. There is one thing my therapist was explaining when I was starting to feel like no one really got just how bad I felt, well, actually two things…
1- Are you telling them (I’m talking spouse, BFF, not the mom next to you at the school bus) exactly how bad you feel? For awhile I was trying to have more positive answers when people would ask me how I was because I figured they must be getting bored with me never being able to answer that question with a smile, but then I learned that if you try and play things down sometimes than how could people get just how miserable you are? I hope that makes sense…
2- People can get ‘compassion fatigue’, meaning that sometimes it’s emotionally exhausting to constantly being trying to make someone you care about feel better. Not that they shouldn’t keep trying & certainly you should NOT stop sharing but it’s also good for you to put yourself in their shoes too.
To answer your question about the meds…
I have short acting pain medication for the bad days, which unfortunately are more than not. I also am taking Plaquinil for the rheumotogloy factor & Horizant for the small fiber neuropathy. Additionally I just started Reglan to help my stomach empty & am considering adding Elavil. My nightstand looks like a small pharmacy which makes me a little sad whenever I see it but man, I am SO grateful to have some medications to help! The plaquinil in particular has made a MAJOR improvement on the small joint pain (I know EXACTLY what you mean about it hurting to grip the toothbrush) and also the morning stiffness. Every day I would dread putting my feet on the floor to get out of bed because I knew how much it would hurt. For now **knock knock** that is almost completely gone.
You’ll be in our family’s prayers tonight Corinna, wishing you find a peace & relief very very soon!
Wooooo that actually makes me feel better. Plaquenil was my drs first suggestion. When he saw how much the swelling in my hand progressed he decided on methotrexate (the low dose of chemo). I cant drink on it and I just quit smoking 12 weeks ago. Not the end of the world but lord give me a vice thru all of this. Hahaha. But ive been on the mtx for 18 weeks and have no relief. If you do with plaquenil that actually gives me much hope since I can’t take the other drugs. This is my next best bet. I think he also worries about the rare eye disease so as u already know im sure. … be sure to get your exams.
As for the friend stuff… ya I’ve tried both. Its also hard to switch the response to be geared toward the kind of person they are. Some dont want to hear it and some want to hear it all. Ill keep trying but I so appreciate you and everything you’ve said. 🙂 im so so happy to hear of your relief! !
I think it’s great that you found some answers! The not knowing part is sometimes the hardest part of these things. I hope that with the answers you can start getting some peace and start feeling good again.
So glad to hear you got at least one answer. My heart goes out to you and I keep you, your husband and girls in my prayers. Try to keep your head up. Positivity really helps, at least I think so. Hugs from my family to yours.
So glad to hear you got at least one answer. My heart goes out to you and I keep you, your husband and girls in my prayers. Try to keep your head up. Positivity really helps, at least I think so. Hugs from my family to yours.
PS. I love your t-shirt!
I am so glad for the update. I have been stalking your blog. I hope you can find relief soon and get back to the old Natasha. You are a fabulous mom and blogger! Don’t worry you are not boring us with your posts we all have an interest in your health. I feel like I know you in a non creepy virtual way. P.S. Your shirt is awesome.
Ok back to the snow day.
I feel so weird saying this, but congratulations!! I guess the only thing worse than an answer is no answer, which is all you had been given up until now. At least now they can treat the symptoms and hopefully slow any further pain/muscle problems/etc.
Hope, not lost yet 🙂
Congratulations very happily accepted! (:
I’m so glad that you’re finally getting some answers! I still continue to pray for you and your family. May God bless you with strength and health!
I’m so glad you were able to find some answers!! I have been praying for you guys – and will keep praying, since just because you found some explanation, doesn’t mean your symptoms will cease (I pray they do!)
I also cried while listening to the Family Meeting today. And I also love Momestary!! I love when all my worlds collide 🙂
Natasha….so glad to hear you have an answer. I am a HUGE fan of the Kane Show and was listening this morning and heard him talk about all the problems you have been facing. I truly believe he is a better man because of you and didn’t realize you were going thru all this. My prayers are with you and your family. Stay strong chica…you are an inspiration!
I am happy that you have found an answer like others have said here. Honestly the first time I heard of your story was on today’s show with the family meeting. Your husband loves you very much. Natasha, I can say you are not boring us. I find you talking about what you are going through a way for others to help them go through what they are going through.
We are happy for you
Huh… a few years ago, my endocrinologist, after many baffling years of weird symptoms and many more years of tests, told me that I had some form of an unknown autoimmune disease, and the best they could diagnose me with was Fibromyalgia, and that they could deal with the various symptoms with medications, but that there was no cure. Of course, my relief with not having some strange disease that was going to kill me was offset with the disdain of many people’s opinions that Fibromyalgia is a “garbage” diagnosis. WHATEV. Walk a mile in these UGGs.
I am so glad that you had the chance to go to Mayo and run through their paces. I’m also glad that you got some answers. It’s better to know what it is that not.
Kiss those darling girls and just keep taking it a day at a time.
I’m so glad that you finally have some answers. I can’t even begin to imagine what you & your family have been going through but I want you to know that you have so much support from everyone. I wish you comfort, relief from pain & love as you go through this tough time. I’m thankful that you have such a strong support system around you. Sending lots of positive energy & blessings your way.
Natasha if you’re looking for a new GI you
Should see Sean Hunt or Carmen Hernandez in
Frederick at Frederick Gastroenterology and Associates.
They are very smart and the best GI’s I’ve known
and worked for. They are well respected by Drs at UMMC and Hopkins.
Good luck with everything! If you do decide to call and they
Tell you It’s a long wait for an appointment just say
That Sam referred you.
Grieving is exactly the right word. I would say I grieved for the better part of a year after my diagnosis. You have to accept that your life will never be like it was before. But I promise it gets better. I was diagnosed with RA five years ago. I also have psoriasis, Sjogren’s, and Endometriosis. The challenges are constant, and the doctor’s appoinents feel like a part time job. However, I no longer take my health or life for granted. On good days, I live to the fullest. Knowing is a blessing. Only in knowing can you find solutions.
That’s beautifully said Miranda. My mom has been diagnoses with Sjogrens & it’s led to Endometriosis, I know how much that affects her life so I can kind of get how your day to day must be. Lots of love your way!
I’m so happy you have an answer!! In the past few weeks, every time i check your blog there’s always the faintest knot in my tummy because I reaaaally want things to work out with your latest appointments, so when I saw your post on Facebook today, I literally dropped what I was doing to come read this! My husband thinks I’m crazy because you’re “just someone on the internet” lol but I’ve been following your blog for 2 years, and I really do want you to be ok! An answer might have led you to a really rare and hard to treat disorder but at least you don’t have the psychological worry over what’s wrong, and now you and your doctors can start working on a plan of action!
Best of Luck!
Awww, Iman, your comment put a big smile on my face!! Huge online hugs to you!!!!
I’m so happy you got some answers. I’m also heading off to read more about the autonomic testing, because I have a friend dealing with many of the same issues, and I’m now curious. If nothing else, I’m guessing these past several months have made you appreciate so much more, and learn to not take things for granted. Difficult times have a way of making us step outside of ourselves and learn to appreciate what we DO have, and not get so bogged down in the petty day-to-day minutia. I had a rough pregnancy (with 3 weeks of bedrest), and I am a very independent person. The closest I have ever felt to my husband, and the most I have ever appreciated him, was when I had to be more dependent on him. Weird, because I hated, hated, HATED having to be dependent on him, but now I look back at that time wistfully. Hard times bring us closer to God, closer to those we love. If nothing else, then you have gotten that.
I’m sure that’s of little comfort to you now, as you tackle the next mountain of how to maneuver through your world with this new diagnosis. But, you have a ton of people rooting for you. 🙂
So happy that you have some answers, even though they are hard answers. Keeping you in my prayers!
I was not aware of what was happening. God bless you and que diosito te cuide.
I was in second grade the first time I had a crohns flair up, which consisted of severe stomach pain. No one knew anything about crohns back then, so the doctors told my mom it was in my head. Since they couldn’t find anything wrong and all. Five years later, I had a cramp in my leg making it hard to walk. The orthopedic diagnosed me with a “stress fracture”, which was weird because I didn’t do anything to hurt myself. The next day I woke up and was unable to move, my leg the size of an elephants. Well week later, several painful test later, including a spinal tap, turns out I had crohns disease which cause rheumatoid arthritis. Its hard to see the light at the end of the tunnel right now, I know I have been there. But you will find the light, and when you do its going to feel like a weight lifted off your shoulders. I hope you find the answers you need soon. I’ll keep you, and your amazing family, in my prayers.
By answers you need soon, I mean I hope the doctors can help your further. good luck with everything.
I am so glad you are finally getting answers to all your problems! Your story reminds me a little of my own. I have been diagnosed with Crohn’s Disease, Alopecia Areata, Restless Legs, Fibromyalgia, and just recently POTS. That was the hardest one, and it was actually my husbands aunt all the way in Washington State that figured it out. My BP is always low, but it was dropping so low I was fainting and hurting myself when falling. My ?aunt-in-law? called my mother in law and said, “I know what she has, its POTS!” my MIL thought she was saying I smoke pot, LOL. But after a half year of random fainting and hospital stays we had a direction to go to. I saw a dr. at VA heart and had a Table Tilt Test done to diagnose it. Sure enough my BP dropped way low, my HB shot up, and BAM! I’m pass out. I became pregnant June 2013 (I’m due in March) and the doctors were so afraid for me and the baby. But because of my extra blood flow my POTS has been stable. I just might need a c-section because they are afraid I could faint during delivery. I even have a full head of hair now (Alopecia has had me bald since 2010). So apparently being pregnant is good for me!
Sorry to ramble on about my issues, I just wanted to say I have been following you the whole time and I am SO happy you are finally getting your well deserved answers! I hope they can get you on the right medications and do everything to help you lead a healthy life! I’m 29 and about to have my first child and just hope that I can keep all my medical problems under control as well!
Good luck to you Natasha!! 🙂
I love seeing your posts appear in my inbox when you have blogged. I don’t always comment but I do stalk your blog 🙂 You are such a brave lady and a fighter and I’m glad you were able to get some answers. I feel like we are friends and when I heard Kane mention you in his family meeting the other morning I thought to myself “I know Natasha is at the Mayo clinic, she told us what was going on!”
I love the way you tell your stories, please keep us updated because we are rooting for you!
Also – I loved your TV segment, you were so cute! And, your post about getting the new puppy – and seeing ‘Parker’ on the truck just brought me to tears. What a special way to know that you were doing to right thing – I’ve heard them called “kisses from God” and I think that was a perfect example.
“Kisses form God”…I love that Katy, thank you for your sweet words, they mean more than you can imagine. (:
Hey Natasha! Glad u got some answers finally! Go see Dr. George Bolen! He’s a great GI doc. He’s at Metropolitan Gastroenteronology group in Bethesda.
Sorry to hear about your autoimmune disorder. I have a different kind, it doesn’t affect my body but if confuses my hair as a foreign object and it attacks it. I have various patches of hair loss (all hidden, thank God). I have been dealing with it for the past 25 years. WHOA! I just typed it out and realized it’s been 25 years (majority of my life). I started researching recently (frustrated with lack of answers) and saw certain foods being connected to lots of autoimmune diseases and flares up. It is called Autoimmune Protocol Diet. It may be worth a shot. I am about to try it. Everything else failed.
Oh man, I’m so sorry Irena! I had actually forgotten about it but once I did get a completely random case of alopecia & lost a good 2″ wide circle of hair. It was so traumatic! I’m going to look up that diet too, thank you!
I read your blog pretty regularly and also listen to your husband every morning. I have never posted, but I feel so bad for you with all this medical stuff. Every time I read about your “mystery illness” it reminds me of mine. I had crazy symptoms for 5 years with many doctors telling me I was a hypochondriac or crazy while at the same time saying that they knew I was sick?! I had/have many of your symptoms…tingling/restless legs, problems regulating temperature, horrible arthritis and neurological problems that made my brain so foggy that I almost couldn’t function (and a host of others that I won’t bore you with). I finally found out that I had been carrying Lyme Disease and 4 co-infections unknowingly and they were reeking havoc in my body. I know some people have mentioned Lyme to you in the past, but have you ever been tested for Lyme co-infections ? I usually wouldn’t even post this, but every time I read about your health problems, it just screams Lyme to me. If you still don’t find any answers from the Mayo Clinic, please consider looking into this possibility more.
Thank you for sharing Carly, you know I’ve had lots of Dr’s (both infectious disease & rheum.) tell me that my continuous positive Lyme test results are false positives but comments like yours always make me wonder a bit…
I have been tested about 6 times in the last few years but none in the last year. I know the timing of Lyme is pretty strange so I always wonder ….
Did you know Lyme has a 50% false negative rate?? It’s a terrible test. You should watch “Under Our Skin”, I did when they thought I had Lyme & it was the scariest more interesting documentary!
Ill check it out. Thanks!!
I was literally checking your blog a couple times a day after your last post. I knew you would post when you were ready though and I didn’t want you to post a minute before then! I’m so glad you got some answers. I’m sending good thoughts to you and your family.
Awww, Thank you so much Mariesa, that makes me feel so loved, you have no idea! (:
YAY for an answer!!! It sounds like you still have a lot to deal with though so my prayers for you won’t stop. I really hope now that you have something to go on, it’ll be easier for you to begin steps toward feeling much better! 🙂
Hi Natasha, just wanted to say so happy for you that you have finally received some clarity on your condition yet sorry to hear about the diagnosis. I completely understand both the physical and mental effect this whole process can be. I was diagnosed about 2 years ago (wow I can’t believe it’s been that long already). I also have an arthritis causing autoimmune/connective tissue disease (the call it undifferentiated connective tissue disease because it hasn’t yet “shown itself” so they aren’t sure if it’s lupus, etc.) and all the fun that comes with it (including a few hospital stays and many days spent in bed and home from work).
I wanted to comment to tell you it really does get better! The plaquenil does help and there is so much you can do to help, including some homeopathic things. I still have bad days, but not nearly as many and the anxiety and stress of not knowing really does take a toll mentally and physically.
Best of luck to you and your family!
Hi Natasha,
I’m so happy to hear that you have some answers!! I was introduced to your blog through the Kane Show. I want to share with you my recent health story and how you got me through it. I’ve had neck pain and swelling, very close to me thyroid for about 3 months now. It got worse over the last week so I decided to make an appt. with an ENT doctor just to get it checked out. My appt. was on Tuesday, the day DC was awaiting a large snow fall and I was concerned that my appt. was going to get canceled so I went to an urgent care first. I was told that I had an enlarged thyroid (possibly hyperthyroidism) and my hard rate was extremely fast. I leave feeling defeated because my ENT appt. cancels and I have to wait another 2 days to google and worry about my symptoms before my rescheduled appt. I sat in my car in the urgent care parking lot crying. I turned on the radio to hear your hubby talking about Mel leaving and your health and all that you have gone through. I say all of this to say that thinking of you this week got me through multiple appts, blood work, ultrasounds, tumor scares, follow-ups, etc. You have and are going through so much more and have a family to care for on top of it. Hugs to you and just know that you encouraged me to be brave through all of this. -Lauren
Hi Natasha,
I heard your husband talking about your health struggles and came to read your blog. You have probably come across it during your research, but I wanted to check that your doctors are knowledgeable about POTS. Since your autonomic nervous system is acting wacky, I hope they talked to you about this. It makes your BP drop as well as other problems. I have it (at 22 after Lymes disease at 21) and went through a lot of that diagnoses relief and disappointment at the prognosis that you are experiencing.
I wish the best for you, and hope you continue to have what seems to be a great support system!
You know it’s funny you mention POTS, I had my first neurology appointment with my new doctor and that did come up…I need to learn more about it though. Thank you for mentioning it!
Hi Natasha,
I randomly found your IG and blog through Danni’s IG. I am happy you finally got some answers. I feel like I’m reading my own story. I was born with sickle-cell disease which was pretty manageable until senior year high school, when I was diagnosed with Lupus, as if one chronic illness wasn’t enough for a 16 years old girl looking forward to prom and college. My poor parents and siblings have been through it all with me; from midnight ER visits, to clinical trials to chemo treatments to finally a bone marrow transplant which cured both illnesses 🙂 I wouldn’t be here if it wasn’t for the best medical team at Johns Hopkins in Baltimore. I’m sure you have a rheumatologist, but Dr. Michelle Petri is the best there is. Another thing that worked for me was a naturopath regimen which includes diet change, vitamins and herbs, acupuncture, probiotics, and detoxes.
You and your beautiful family are in my prayers, and your bravery inspires me. -Tunde
WOW! That is such an incredible story, I don’t know which is more amazing to me, that you went through a bone marrow transplant or that it cured both of your illnesses! I am so genuinely happy for you that you have relief today, no one should have to go through what you’ve been dealt ever much less at such a young age. I have no doubt however that you must be an incredibly strong woman today. Thank you so much for taking the time to write me, it means so much. I will definitely take your advice too!
First time I have happened upon your blog, & it was all due to Pinterest. I started reading about your health problems, & can so relate. I have been dealing with ongoing health issues for several years. I have slept in a wingback chair padded with pillows for six years, dealt with all kinds of strange symptoms which are sometimes visible and at other times invisible, have endured full body bone scans, x-rays, numerous blood tests and lots of doctors visits. Most all of my tests have been inconclusive, or came out fine. I finally did receive one diagnosis that is causing some of my problems though, it is called Hashimoto disease, a type of autoimmune thyroid condition. I have also had doctors tell me that I probably have other autoimmune problems that are still low-key, whatever that means, & cannot be detected yet in testing. These autoimmune problems are just causing damage now, since no one can figure them out. The worst part is when doctors, family, and friends start acting like it is all in your head! I continue to lean on God & my faith, along with sewing and music, when I am able.
I pray that we will find help soon! Bless You & Your Family!
Wow Shonda, I know exactly what you mean…you poor thing, I’ve been spending the last few weeks sleeping periodically on my bathroom floor because it’s cool enough for me to put a space heater right on my legs & feet (which makes the pain going away) without overheating on my top half. I’m so sick of not being able to rest in my own bed, I cannot imagine sleeping in a chair for 6 years! I’m so sorry you’ve had such a tough time. I often have low thyroid levels so I’ve heard of Hashimoto Disease, while I’m glad you at least got one diagnosis I’m sorry you got a diagnosis if you know what I mean. Hang in there, I’m so glad you found my blog & you were able to relate & then comment which I could totally relate to! It must be fate. (;
Just started seeing a Rheumy & diagnosed as having fibromyalgia & still trying to confirm lupus.
This autoimmune mess is mean and it strips you of your freedom.
Finding your blog has helped me cope.
Thank you Donalee, that makes me feel better to know its helped you some, it really can strip you of your freedom but I’m starting to find out there are other ways to get it back, it just can be quite a journey to get there. Best to you and please keep in touch!
Hello Natasha,
My husband has anxiety and he’s taking medication for it but it has side effects that we both hate. I remember listening to the Kane show once and him saying something about curing anxiety/depression…based on each person’s genetics…we wanna try that, however, i don’t remember what institution/center does that exactly. Kane was gonna have a doctor (i think) come over at the show and test everyone’s DNA to treat each one’s disorder specifically based on their DNA. Could you help with that ?
Thanks