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Brie
@brie87144

Posts: 24
Joined: Jul 20, 2016

Autoimmune diagnosing problem

Posted by @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.

REPLY

@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.

Jump to this post

@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.

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?

@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?

Jump to this post

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).  ??

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.

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!

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.

@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.

Jump to this post

I know that your blood can be filtered. Like they IV it out of you into some machine and IV it back into you simulanteously. Serious drug addicts (like rich Rock Stars) have it done to get clean. Would that be a possible treatment? Did the Drs look for Lyme?

@brie87144 your experiences and condition are so very sad to hear about. First, I have to say, with your parental/family/work obligations, it is truly astounding that you have been able to hold it together despite feeling so awful, so long, with no clear diagnosis nor obvious path to recovery. I pray that you WILL find the help you need, and recommendations for next steps, and recovery. I noticed in your list of specialists consulted there was no mention of a TOP infectious disease specialist. Because your first symptoms began after a viral infection, I wonder if you might have 1) a RARE viral infection from the start, OR 2) a secondary infection set in after the first “infection,” causing the ensuing “pins” sensations, balance issues, bladder issues, and sensory and balance/stamina malfunctions.

If you could possibly have Lyme disease–or any infectious disease that is even more rare–maybe a TOP infectious disease specialist could help rule in or out causes, and recommend treatments. There are many many rare infections that can throw our systems into disarray. Here is a list of “rare” viral infections (seventeen pages of various types, with short descriptions, & links) https://rarediseases.info.nih.gov/search?Keyword=rare%20viral&page=1 This list might not be exhaustive. The same site provides a 72 page list of “rare bacterial” bacterial infections, short descriptions, and links to more info. https://rarediseases.info.nih.gov/search?Keyword=rare%20bacterial%20infections&page=1 Again, this list might not be exhaustive, but maybe you could copy/carry it to a consult with a TOP infectious disease specialist, to determine if ANY might be responsible for your symptoms, and if there might be a treatment that could help with a cure or at least improvement of your symptoms and quality of life.

I, too, am so sorry you are going through this, not only for the frustration, pain, sensory loss, risky balance/stamina and uncertainties you are experiencing, but also for your family who also probably feel helpless as to what to suggest. I will keep you in my prayers, and hope that helpful resolution is within reach. Please keep us posted.

@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?

Jump to this post

Hello @olegraymare — I think you may be getting confused because the discussion has more than one thread going on between different Connect members. When you are reading the discussion if the post addresses a specific member they will usually be tagged at the start of the post like this one. When you read this post in the link below it was address to a different Connect member and then when you responded you didn’t know Dr. Levin, I compounded the problem by saying I read it in your post and I didn’t. I read it in the post of the person I had originally responded to. So we just mixed a couple of thought trains together and made chicken soup. I apologize for not seeing that sooner. Here’s the original post I was responding to:

https://connect.mayoclinic.org/comment/85355/bookmark/?ajax_hook=action&_wpnonce=6c8617af9d

If you are getting too many emails you can click the unsubscribe in the email that gets sent to you or you can go to your Profile at the top right part of the screen and click Account Settings. Under Account Settings you will find Email Notifications where you can click the Edit link and disable any notifications you do not want to see.

John

@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?

Jump to this post

Yes, that makes it clearer to me now. It was starting to remind me of all the mail I get from companies I have ordered from on-line : 0

@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?

Jump to this post

Epstein-Barr and CVS. Those came out after extensive testing post international travel. I got giardia in Singapore (could have gotten that in my back yard, but No, Food Courts in Asia) and it took 9 months for the Drs. to determine that it really was giardia. By then, my gut was a wreck. So EB presents as Mono and it is very opportunistic. You get the least bit run down and Boom, you feel like you have a horrible Flu. I avoid newborns because of the CVS. Mono is a variety of chicken Pox and that Virus hides in your nerves until it can pounce. Thank you for your kind words.

Liked by taterjoy

@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.

Jump to this post

John,
I am going to address a few issues you have responded to…. One, even though my girlfriend who I love dearly for being such a humanist and responsible MD cannot ethically treat me because of our relationship, again it needs to be stated this woman graduated at the top of her class in med school, has so many Phi Beta….. everything's, that I lost track during her school years…. I value her 35 year plus of experience and top notch intellect even more…. so I make my own decision based on the facts and this one started this way…. after suffering from the catastrophic loss of my core muscles to the point I literally fell from bed to the floor, after a nap, and like that commercial, I will no longer hate….. 'I have fallen and I can't get up'…. and was forced to crawl to the front door to let the Medics in who came to transport my broken body to the ER… 
The point I wish to get to is this….. during that ER time before I was admitted they gave me what I was sure was a shot of 100mg of Prednisone into my IV…. no effect was noticed…. after being admitted about 8 hrs later, I was given another 20 mg tablet…. within two hrs of this I was able to stand on my own five times, before getting exhausted and during that period, for the next 10 days, I was never able to repeat standing on my own until I was released from the ER for the 4th time in 6 days…. and increasing my dosage to 80 then down like I stated earlier… which has now given me the ability to recover 100% of my bodily functions. So after consulting with my girl, and her talking to a top Rheumatologist she knows from UCLA, where my partner did her residency…. I went for the stragity of in her words "Hitting it hard and fast" then back down as soon as indicated, which I am now at 10mg a day…. this took about 7 days to get this low…. I feel strongly that being able to stand on my own for the 5 times mentioned..earlier in my first visit… my initial 100 Plus 20 of Prednisone….. 120 gave me the small window that did allow me to stand…. it just feels like this was the catalyst that worked….
Understand, I was not leaving that hospital until they told me something about What The Heck… was going on with my body… After my fourth and final sitting in the ER for 12 hrs, they were giving me the message go away, we have no resident Rhematologist and to this day I am still waiting on an appoint on the 22nd of this month to see one who visits Flagstaff from Phoenix… Anyway my insistence and stubborn Irishness got me a wonderful stay in an MRI for 2.5 hours without moving to do a complete head, neck and spine scan…. no neurological issues found, although the neurologist wanted a neural conductance test ran…. which never happened… So this is the complete story to help you understand what and why this insanely unnerving trial by fire…. into the world of Autoimmune Disease, went down….   

"All of humanity's problems stem from man's inability to sit quietly  in a room alone."  Blaise Pascal

Reagan McGuire

@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.

Jump to this post

Hi Reagan (@reagan1mc) — I completely understand where you are coming from. It’s close to my first bout of PMR but your case was quite a bit worse than mine. I let it go too long before setting up an appointment with a rheumatologist. Then it just got worse while I was waiting for the appointment day to roll around. When the day came up I fell on my face getting out of bed due to pain in my legs and knees and I had to use a walker to walk. My wife drove me to the clinic and I got a wheelchair ride to rheumatologist appointment. He first sent me to a room to take care of the swollen left knee. They drew a large vial of fluid from under the kneecap (I think) and gave me a steriod shot which made if feel a lot better and I could walk a little. Then I met with the rheumatologist and he diagnosed PMR and sent a prescription down to the lower level pharmacy for 20 mg prednisone tablets. This was in the morning and he said go pick up the prescription, have lunch and he would see me back in the afternoon. So I hobbled around with my walker, got the prescription, went to lunch, took a 20 mg tablet and waited for the appointment. Within the 2+ hours of waiting to see the doc again, I was able to walk without the walker and the pain was almost totally gone. I don’t like steroids myself but at the time it was a miracle for me and like you said it gave me back my mobility. It took me 3 years to get off of prednisone and I was a happy camper when the PMR went into remission. I don’t PMR ever gets fixed or cured. I think it just stays under wraps until something in your body triggers and I haven’t got a clue what does. The funny thing about the timing is that I have two friends who live in the area that I found out had PMR at the same time and were taking prednisone. Both have had their PMR episodes go into remission and it has not returned yet.

So, I just am thankful for the good days and have to take the others one step at a time and one day at a time. It seems you can’t just have one autoimmune disease and my other one is idiopathic small fiber peripheral neuropathy. I’m just glad I don’t have the pain with the PN…just the numbness in the feet and ankles. I am the token old man at work (74) so the young guys hold the door open for me and I get all the senior citizen perks. One winter day a few years ago the sidewalk was a little slippery and I got out of the car and one of the guys held the door open for me. In my haste to get to the door, I slipped and fell flat on my back. The look on the young man’s face was priceless and I was just laying there taking inventory when I blurted out “Help! I’ve fallen and I can’t get up.” Then when I started laughing he knew I was OK.

You have a lot going for you, not only do you great support in your girlfriend, you have the need to ask questions and find answers. It took me 20+ years to learn to be my own advocate.

I’m hoping 2018 holds some answers for you and Mr. Nasty will take a very long vacation and never come back.

John

@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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I don’t know what PMR is. Could you tell me? 2018 is going to be the year that we find our Bliss! Regards,
Robbin

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