1. < Autoimmune Diseases

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Jan 5, 2018
In reply to @kanaazpereira "Hello @alwayswithgrace, Welcome! You are not alone in your frustrations of not getting a clear answer,..." + (show)
@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

☺

REPLY
robbinr | @robbinr | Jan 5, 2018

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.

REPLY
reagan1mc | @reagan1mc | Jan 5, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@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

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 5, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@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

REPLY
robbinr | @robbinr | Jan 5, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@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 don't know what PMR is. Could you tell me? 2018 is going to be the year that we find our Bliss! Regards,
Robbin

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 5, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@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 @robbinr, PMR stands for polymyalgia rheumatica which as was explained to me by my rheumatologist - arthritis all over the body. Mayo Clinic has a better description here:

https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539

It can be a very painful disease but everyone is a little different. If not treated it can be debilitating.

John

REPLY
peach414144 | @peach414144 | Jan 5, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@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

for regan mguire and john bishop. thank you both for your posts. i can relate exactly to having experienced what you both have written on this site. you have helped me to believe that i am not crazy, that i am sane. when experiences like what you both have had helps me to better believe in myself. for i have also been there. and at this time i am experiencing another episode. very painful. i am checking my equipment, the cane, the walker, the seated walker, the wheelchair, the wrist bands, the short boots, the tall boots etc. still looking for a good knee brace. any suggestions for the knee brace? i have an entire closet for all these necessary medical aids. my stomach ulcer will never heal because of all the pain pills i take. (but never any opioid addictive pills.) thank you, thank you for allowing me to believe in myself again. i am really very sorry that the both of you have gone through your horrors. god bless both of you. peach barbara

REPLY
reagan1mc | @reagan1mc | Jan 5, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@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

Excellent review of what you have had to deal with and to clarify a point you made earlier that this is cellular and I back it with what I have been doing in terms of preventative medicine, my own way to maintain youth and health. First of all my skin and my body looks like I am 40 years old if that.... what I have developed as a Pre-plan is this, I take Basis from The Elysium group that increases the NAD factor in every cell to 40% of what would be there if I was 40, I am 64.... here is a review and a link....

"The one daily supplement your cells need. Cells need the coenzyme NAD+ to function, and NAD+ declines as we age. Basis is clinically proven to increase NAD+ levels." They have done human trials and it has worked.... in every cell as a potential for regenesis of each cell...... This group has five Nobel Laureates working on this, all in the field of anti-aging...

Two; I take LifePak Nano which is described in this way....... Nourishes and protects cells, tissues, and organs in the body with the specific purpose to guard against the ravages of aging each day of your lifespan* Superior bioavailability with CR-6 Lipo Nutrients™ enhances uptake from the gut into the bloodstream and body for maximum anti-aging benefits* Advanced anti-aging formula helps protect the body with key nutrients such as Nano CoQ10™ and nano carotenoids* Helps maintain normal inflammatory responses in the body* Feeds and helps protect the brain with DHA and EPA (two CR-6 LipoNutrient™ softgels contain the same amount of EPA and DHA as two Marine Omega softgels)* Offers superior DNA protection against damaging free radical attacks by providing the body with important antioxidants and phytonutrients such as alpha-lipoic acid and catechins* Protects cell health with an antioxidant defense network* Helps protect cardiovascular health with a comprehensive blend of omega-3 fatty acids and other nutrients Provides comprehensive bone nutrition support* Promotes healthy immune function" Supports normal blood sugar metabolism*
Corrects nutritional deficiencies* SCS certified..... https://www.nuskin.com/en_US/products/shop/shop_all/lifepak/01003610.html.....

I really think by following this routine I have put my immune system into Over-Drive and someone in like a Mayo type setting needs to look into this, because I believe the Over-Drive status of each cell has contributed significantly to this and if this proves to be right, treatment made available to every suffering from having this ripping the life and functionality out of people like us with this insidious disease or diseases plus ....

Your thoughts.....

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 6, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@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

Thank you Peach Barbara (@peach414144) for the kind words. I think when we are able to share with each other and know we are not alone it's a help to us all. Unfortunately I don't have any suggestions for a knee brace. Do they have any medical supply stores near you? The only reason I mention that is that I went to one when I was looking for a back support belt and didn't like the ones the local sports equipment outlets had. I was surprised by the different equipment the medical store had (not sure why I was surprised though - should have expected it). Mayo Clinic has some information on knee braces for osteoarthritis that may be helpful if you are shopping for one:
https://www.mayoclinic.org/tests-procedures/knee-braces/about/pac-20384791

John

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 6, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@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

Reagan (@reagan1mc), thank you for the details and the link. I take some high quality over the counter vitamins and supplements that sound similar. The main ones being Sodium Stabilized R ALA ( 600 mg morning and evening), Carlson's Fish Oil (800 EPA/500 DHA - 2 tsp morning and evening), Manitoba Harvest Organic Hemp Seed Oil (1-1/2 oz each morning), 5000 IU D3 (morning and evening), 2 - 200 mg Magnesium tablets (morning and evening), 1000 mg Brewers Yeast (2 tablets morning only), 500 mg Acetyl L Carnatine, B12 - 2 3000 mcg capsules (morning and evening), Biotin (2 x 10,000 mcg taken mid-day). All that is to help with my PN.

I also take CoQ10 - 100 mg daily, Gaia HerbsTumeric Supreme capsules, and AREDs 2 Eye vitamins. I'm still trying to find out what a therapeutic dosage is for CoQ10 to see if it would have any advantages for what ails me. I'm hoping to get some quite time later this weekend and will take a look the link you shared.

A local man that walked into our office last Thursday with bounce like a spring chicken. I would have guessed his age in his early 70s and extremely good health. One of the folks in our office told me he turns 100 this April. Yikes!...and then there is me. Hey, at least I have my mind.

Hope you have a great weekend.

John

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