Autoimmune diagnosing problem

Posted by Brie @brie87144, Jul 20, 2016

I don’t know what to do at this point. I’ll give some of back my story, up until I got extremely sick in October 2014, I was completely healthy and what I considered normal. I rarely went to the Doctor for anything, rarely got sick and I was always on the go. I’m a 32 year old female, married with 2 kids. In October 2014 I came down with some sort of virus. I was extremely sick for about a week. Within 2 days of feeling better I started having pins and needles only on my left side in my arm, hand, leg and foot; my left leg also started falling asleep. I just thought all that was weird and went on with my life, not seeing a dr or anything. Starting in January of 2015, my symptoms started getting worse. I was walking through a parking lot when I lost complete feeling of my left leg and fell. It lasted about 30 mins or so before I started getting feeling again. By this time my pins and needles were staying constantly, the numbness was becoming more frequent, and now my left side was extremely weak. After visiting my primary she confirmed the weakness, ran a bunch of lab work and referred me to a neurologist in my area. Fast forward to December 2015, I had 2 mri’s, completed physical therapy and been seen by 2 neurologists, both of which told me they didn’t want to spend the time to help figure anything out. My pins and needles had now migrated to the right side, and my face; I lose complete feeling in my left and right legs, more on the left, as well as in my left hand; My bladder started giving me issues retaining and releasing; I frequently become so extremely tired I can’t get out of bed for days, sleeping the entire time; my balance is so out of whack that there are days I’m walking and I look like I’m drunk because I can’t walk well; started having memory issues, as well as word finding issues. Because of the random dead leg, and balance issues, I fall frequently. So I decided to come to Mayo Clinic.

They have done numerous tests and blood work. I have had a full spinal and brain MRI, EMG (x2), spinal tap, skin biopsy, audiology testing, balance testing, ARS, QSTAT, BAER, VER, SSER, Nystagmography Tests, Tilt table testing, dynamic posturography tests, urology testing, and I’m sure some others I can’t think of right now and all have come back clear except a few small issues, but don’t offer any insight to my issues. I came back positive for small fiber neuropathy, I failed all six stages of my balance testings but because I didn’t need assistance the dr said he won’t consider it failed and nothing was done, they found mild bilateral hearing loss, and my tilt table came back slightly abnormal.

I’ve seen consultative med, hematology, neurology, urology, integrative medicine, and psychiatry. No one can figure out what’s going on but my life has changed so much that I need to figure out what’s going on so I can either treat it or figure out how to deal with it. I have a hard time staying awake, my balance is completely off, I randomly lose feeling in places and fall, I’m weak on my left side and have issues standing for long. I was going to school full time and had a 3.85 GPA until this now it’s dropped to a 2.75. I can’t keep up with anything and I don’t know how I’m going to work when I can’t tell when there will be days I can’t wake up or get up. Or when My balance is so unstable I can’t walk with out help.

I was referred to neuromuscular and saw the Dr this morning. He said I won’t treat anything until we know more, which is fine because I want to know more. But told me to have a great day and didn’t tell me what to do next or where to go from here. He just said send me a message of it gets worse. I don’t have any other appointments or outlook on what to do now. I’m not out seeking, looking for, or even asking for medications. I just want to figure out some sort of normal. I don’t know how I’m supposed to help support my family or work of I can’t even do anything. But not knowing I don’t have many options, can’t get medical help or anything.

I’m so frustrated and feel like everyone’s brushed me off. What I wouldn’t give to just feel normal again or at least have an answer.

Please have an endocrinologist test for thyroid TPO and Anti-TG Antibodies. All my usual thyroid tests (TSH, T4, T3, etc.) were “within range” until the antibody tests were run; mystery was solved. Also, has your blood calcium level gone up? Another VERY important test is Vitamin D level (25-OH VITD).

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@peggy1949

Please have an endocrinologist test for thyroid TPO and Anti-TG Antibodies. All my usual thyroid tests (TSH, T4, T3, etc.) were “within range” until the antibody tests were run; mystery was solved. Also, has your blood calcium level gone up? Another VERY important test is Vitamin D level (25-OH VITD).

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Hello Peggy (@peggy1949) – welcome to Mayo Connect! We are glad you found us. It’s a great place to share information and learn from each other about similar health concerns. I noticed you posted some good information but I wasn’t sure who it was meant to read it. Was there a paricular Connect member you were trying to help? Can I offer a suggestion? When you reply to a post, click Reply directly under the post by the person you are replying to. I usually also add their Connect name (@connectname) so that they get an email notification.

Thanks again for posting this information!
John

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My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

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@alwayswithgrace

My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

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Hello @alwayswithgrace — welcome to Mayo Connect. We are glad you found us. It sound like you have a lot on your plate and have been dealing with it for a long time. I’ve had one instance of gout in my right foot many years ago and it was swollen really bad. I was given colchicine and it did it’s thing and the swelling went away fairly fast. I was also diagnosed with polymyalgia rheumatica around the same time. I can remember the right foot being so painful I could not stand on it.

Did you receive a diagnosis from Dr. Levin? Also have you thought about seeing another doctor to get second opinion?

Here are some pages that may shed some light on some of your symptoms:

Mayo Clinic information on causes for red eyes:
https://www.mayoclinic.org/symptoms/red-eye/basics/causes/sym-20050748
Mayo Clinic slide show on common skin rashes:
https://www.mayoclinic.org/skin-rash/sls-20077087
You also may want to check out the Mayo Clinic Symptom Checker here:
https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075
I’m also tagging a few Connect members who may be able to offer more suggestions or information. @kanaazpereira @predictable @hopeful33250 do you have any suggestions for @alwayswithgrace ?

John

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@alwayswithgrace

My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

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Hi John.  Thanks for your quick response.  No, the past year hasn't been my cup of tea … your situation doesn't sound much better !
I live in Virginia Beach and don't know who Dr. Levin is … nor do I know what colchicine is.  I don't want to be on prednisone any longer (I'm only on 1 mg now) and I am very leery of taking supplements.  What I would like to do is maybe talk to a nutritionist to determine WHAT is causing my inflammation.  I don't know who else to talk to but a nutritionist!  We have a couple of homeopathic doctors here that have been recommended to me.  I'm on the fence.  However, one of them is a nutritionist.  I was always of the opinion that my diet is a very healthy one and I'm not over weight.  But, one never knows.

I'm frustrated because normally I'm a very active (athletic) 70 year old.  Maybe it's just my arthritis/tendonitis getting to me.  Need to slow down.  But, when I move, I feel better.

Regarding a second opinion … actually when I first started hurting, my first step was to see my G.P.  After telling him my symptoms, he told me it sounded like classic PMR.  Then, he referred me to a rheumatoid arthritis doc (after a 3 month wait, I was able to get in) … and she did the popular C-reactive protein test and my level was VERY high (33, rather than the customary 2.5).  So, she diagnosed PMR too.  Between seeing the GP and RA, I went to a chiropractor and an orthopedist who did an MRI of my neck and left shoulder.  Also did the PT thing.  So, that's more of my history.

P.S.  Sorry for the looong post !!!
Jan

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@alwayswithgrace

My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

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You are doing the right thing by staying as active as possible. Sorry about the Dr Levin comment… I saw the name in your post. You might want to check out a book by Dr Terry Wahls – The Wahls Protocol. She’s all about nutrition at the cellular level. She has an amazing story about how she reduced/eliminated her MS symptoms through nutrition. Here is a YouTube video of her:

John

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@alwayswithgrace

My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

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@olegraymare Hi! Very interested in your list of symptoms and signs. They are classic. For some forms of Amyloidosis, that is. And there is a class of medicine just coming out now which you will appreciate. Patisiran is one of those. Your statement about more than one doctor finding nothing wrong hit a note with me. I have known for 70 (seventy) years that something was wrong. I have gone up and down with weight, brain problems, and every organ I have left has been diagnosed with some problem or another. You can read my story free at https://bit.Ly/1w7j4j8 “Amyloidosis Dossier…” Probably 60 doctors have told me there is nothing wrong, that the lab reports were not reliable, that I was “psycho”, the medicine was made in China, etc. But now I think I know the truth. I have a form of Amyloidosis. The weight loss, and the lab reports, and even a few of the doctor reports have said as much. Anyway, I think you should go to a top clinic, such as Mayo-Rochester, or Sloan-Kettering, or City of Hope. They are better prepared to handle this. In the meantime, watch and learn from their videos and other writings. Especially the Grand Rounds videos from Rochester. Ask your doctor to watch the one “What the doctor should know about Amyloidosis.” And you watch it as well. And the others. Have your doctor contact AlnylamAct.com to get you into their genetic testing program. Anyway, what you describe fits Amyloidosis, especially Hereditary Primary Systemic Transthyretin Wild Type. (short form: hATTRwt). There are probably a couple thousand mutations of Amy, although we don’t know all of them yet. One great book on the subject is from Mayo’s Morey Gertz, MD, “Amyoidosis – Diagnosis and Treatment” It is expensive, but well worth the money. Also, Kenneth Kee has a couple, and NIH.gov has a stack or two of articles and papers. Don’t rely on your doctor to be up to date. Study for yourself, and find a strong hematologist.

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Hello @alwayswithgrace,

Welcome! You are not alone in your frustrations of not getting a clear answer, especially with all that your are experiencing! We’re so glad that you’ve joined the Connect community.

Here are some discussions, where you will meet fellow members dealing with similar issues:
– Need to find out what’s wrong with me https://connect.mayoclinic.org/discussion/need-to-find-out-whats-wrong-with-me/
– Need help! undiagnosed symptoms. Losing hope.https://connect.mayoclinic.org/discussion/need-help-undiagnosed-symptoms-losing-hope-1/
– Autoimmune? Or is it all in my head? https://connect.mayoclinic.org/discussion/autoimmune-or-is-it-all-in-my-head/

I’d like to introduce you to a few members from these discussions, too; please meet @hchristopher @taterjoy @lisabeans @jewel8888 @lighthouseceliac @robbinr @jeffrow @tiffmeag3 who have all written about the stress and worry of having multiple symptoms, yet no clear treatment path.

I believe the question about whether you had received a diagnosis from Dr. Levin was meant for you, @alwayswithgrace? Have you seen any other specialists for your symptoms?

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@kanaazpereira

Hello @alwayswithgrace,

Welcome! You are not alone in your frustrations of not getting a clear answer, especially with all that your are experiencing! We’re so glad that you’ve joined the Connect community.

Here are some discussions, where you will meet fellow members dealing with similar issues:
– Need to find out what’s wrong with me https://connect.mayoclinic.org/discussion/need-to-find-out-whats-wrong-with-me/
– Need help! undiagnosed symptoms. Losing hope.https://connect.mayoclinic.org/discussion/need-help-undiagnosed-symptoms-losing-hope-1/
– Autoimmune? Or is it all in my head? https://connect.mayoclinic.org/discussion/autoimmune-or-is-it-all-in-my-head/

I’d like to introduce you to a few members from these discussions, too; please meet @hchristopher @taterjoy @lisabeans @jewel8888 @lighthouseceliac @robbinr @jeffrow @tiffmeag3 who have all written about the stress and worry of having multiple symptoms, yet no clear treatment path.

I believe the question about whether you had received a diagnosis from Dr. Levin was meant for you, @alwayswithgrace? Have you seen any other specialists for your symptoms?

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Hello.  No, I don't believe that was for me as I don't know a Dr. Levin – actually, I'm getting a bit confused about all the info. I'm getting (also getting posts from people with digestive issues, which I don't have).  ??

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I am so sorry for what you are going through. My story is not as severe as yours but I have been undiagnosed since 2015 with chronic pain. It started with pain throughout my muscles and joints. It actually hurt to hold hands or have my son sit on my lap. I started with my primary. After loads of blood work, I have a slightly elevated ANA so she sent me to a rheumatologist. He did a presdnisone challenge and decided it was inflammatory. I also have ulcerative colitis which has been in remission since 2012. He said I was prone to inflammatory issues. I stayed with him for 2 years. He was able to get my pain from a 10 to a 6-8 depending upon the day. I then sought out a second opinion. I went to Penn Medicine and she said since most of my blood work is normal, I only have fibromylagia. She made me stop my arava (RA medicine) and increased my amitriptyline. That made my pain so much worse but she would not listen to me. I found a 3rd doctor who not only listened to me, he wanted to get to the bottom of my illness. I did start the arava up again since I could not handle the pain anymore. He ran more labs. Everything was normal (even my ANA) except one test was positive for inflammation. He said being on the arava could have an effect on the tests. He then shut off his computer and said lets talk about how you are feeling. Back to an inflammatory issue. He has not given it a name yet but I feel like he is leaning towards RA. He added placquanil to my medication and that has helped quite a bit. It has been a long depressing journey but I am happy to have a doctor who listens and wants to help the patient rather than just rely on labs. My advise to you is keep advocating for yourself and keep getting more opinions. As hard as it to find time to see more and more doctors, it is important you keep going until you get an answer.

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You are fortunate enough to get someone in the Medical industry to even take you seriously in only a few years. It took me five years to get a tentative diagnosis of Fibro. It started with a car accident in which I was not seriously injured on the surface, but two weeks later I was having to crawl to the bathroom.
Amitriptyline knocked me out and I gained 15 pounds in two weeks (water weight).
The only thing I can really pass on at this juncture, 27 years later, is that Anything that the medical industry prescribes is more likely to Hurt you more than to help your condition. Rigorous self examination (charting foods, sleep patterns, flare occurrences) provides valuable information. Acupuncture, gentle movement: water activity, restorative yoga, tai chi, helps.
Sleep is the key. Real sleep, not drugged sleep.
I will amend my harsh statement about No Meds help with one thing that did help – HGH injections. I had HGH for two years and all symptoms remised.
But try to get a Dr. to give you that these days.
They have drugs that will help – performance enhancing drugs that athletes use. Why can’t we get those?
Sorry for the rant. But don’t expect a Dr. to help very much. You got to help yourself!

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It was a blessing to find this doctor. I did discuss my choices with people I have met during my aqua therapy sessions. They gave me this guy’s name. I agree that the medication does have side effects. I have tried vegan and gluten free diets but it did not help my pain at all. I have also tried holistic medications. Amitryptilne is the only medication that has helped my migraines to stay away. I do agree that we have to help ourselves and find what really works. What works for me may not work for the next guy. It is a constant battle but there are some good doctors out there that are willing to treat the patient.

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