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Brie (@brie87144)

Autoimmune diagnosing problem

Autoimmune Diseases | Last Active: Dec 4, 2018 | Replies (211)

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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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Replies to "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..."

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

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

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

@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.

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?

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

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

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

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

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

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…..

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