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.

Lisa | @techi | Jan 6, 2018

@brie what was said previously about rare diseases is so true. I was diagnosed with encephalitis in 1997 then in 2014 it was autoimmune encephalitis and encephalopathy disease. My ana was high and I wasn't even aware of what ana even meant. Then my gasterentologist referred me to a rheumontologist who didn't know why I was seeing her and I didn't either. He never told me that I was to see her or why. Then I found out after so many test my ana is still positive so I know it was from the autoimmune encephalitis which all this started from herpes. So I have seen many doctors who didn't know what was going on and also some didn't care. But when I went to the Mayo Clinic I saw a difference. The doctors work together and they try to give you an answer. So I am going to a new rheumontologist on Monday and I am taking my chart so he will see if do have,a problem. I pray he is good but if not I will keep searching. I was listening on YouTube this evening about autoimmune encephalitis and they stated don't go to your gp about an autoimmune disease it's like going to an orthopedic for a heart disease they don't specialize is that field and they have no idea what the problem is or how to help.

REPLY
Lisa | @techi | 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

@johnbishop hey John I just went online yesterday and I saw this doctor talking about having ms and how she overcame it. She also has online classes. I was a little leary about this but I am glad you mention this Dr Wahl. I guess now I will take some of her classes. Thanks John

REPLY
njcarolnjn | @njcarolnjn | 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

john have your supplements done anything for your pn?

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

Hi @njcarolnjn, yes the supplements I'm taking have helped. I started taking them in Sept 2016 and when I started the numbness from the neuropathy was just below both knees. By Dec 2016 the numbness seemed to be just above the ankle. Not much progress since then but I'm OK with it if if's my new normal as it's not progressing anymore like it was before so I know it's helping. I'm fortunate that I do not have pain with my neuropathy. There are days when I feel a little tingling like the nerves are starting to wake up but it's really hard to tell and subjective on my part. I can tell you that I can now rub my calves a little softly and feel the nerves down into the bottom of my feet tingling which is kind of weird and I've never felt that before this past couple of months so don't know if it's a new indication of the nerves being repaired.

You can read my full story here if you would like the full version for my peripheral neuropathy:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

Do you have pain with your neuropathy?

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

Hi Lisa @techi, I haven't taken any of her classes but I've listened to a few of her YouTube videos. She has her own YouTube channel and offers a lot of different videos. You can just do a search for her name on YouTube and it will bring up her stuff. Her story of curing the symptoms of her MS is amazing. She says she still has the disease but she has been able to live a normal life after being in a wheel chair for a long time. I did buy a soft copy of her book and have it on my iPad. She has some good smoothie recipes in the book ☺

John

REPLY
reagan1mc | @reagan1mc | Jan 7, 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

Although looked down on by many, I believe strongly in the power of the mind over the body which it is a part of, since I am a student of Philosophy and History and was taught by studying Baruch Spinoza, the great 18th century thinker, who saw clearly what cognitive psychologist now know to be true, replace a negative thought and or emotion, with a stronger more positive one.

One biographer said of Spinoza..... "To my mind, although Spinoza lived and thought long before Darwin, Freud, Einstein, and the startling implications of quantum theory, he had a vision of truth beyond what is normally granted to human beings." That he did....

So, when I start what I see as stinking or negative thinking, I retreat in the a quiet place inside I have cultivated a calm space in the storm...... this refuge I suggest one seek, because in fighting this insidious ailment, one needs all the peace of mind, stresslessness, focus, we can find....

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 7, 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, you have hit the nail on the head so to speak. There is power in positive thinking. We listened to a speaker last year that made me laugh as well as think -- Dr. Amit Sood. He has some short videos on his website http://stressfree.org/ that does a great job of explaining how the brain works. Here's one of my favorite:

John

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oldkarl | @oldkarl | Jan 7, 2018

@techi Hi, Lisa. You really said what's real in your note to @brie. Doctors who work together can cover so much more ground, and especially if they work WITH you, not against you. And as I noted in my Amyloidosis Dossier, autoimmune bovine encephalitis and encephalopathy are both mutations of Amyloid proteins. Interesting that you can trace yours back to Herpes. It may be that your Herpes is the real trigger for the mutation of PRPsc->AprP, or, Transmissible spongiform encephalopathy  (e.g. bovine spongiform encephalopathy) . Your ANA being high surely helps to confirm that suspicion. Now that you know this is Prote ein/Amyloid-related, you and your docs will be watching for other evidence of disorders. A systemic package is certainly not out of the question.

REPLY
Martin Jensen, Volunteer Mentor | @predictable | Jan 7, 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

@reagan1mc, what do you think the Spinoza biographer meant by "he (Spinoza) had a vision of truth beyond what is normally granted to human beings." Did the author think Spinoza's concept of reality was better (more reliable) than those of Darwin, Freud, Einstein, and the fellowship that hatched quantum theory over the past century? Did Spinoza have an evaluation framework for differentiating negative thoughts and emotions from positive ones, particularly on the basis of their relative strength or weakness?

I deeply appreciate that you take the time and invest the effort in evaluating your own thinking, so that you know when you are drifting away from reason or reality. Can you help us develop this essential (and presumably rigorous and subjective) process? Given the horrid devaluation of reality these days, all humanity must become experts in separating fact from fantasy or faith.

REPLY
reagan1mc | @reagan1mc | Jan 7, 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 cannot speak to what the 'Author' of that quote thought. However taken the question in good faith that this is not a 'Gotcha', my uneducated guess here, since I quit school in 7th grade, (although I took a few years of college while working at NAU as a research scientist I figured out how to stop bark beetles from killing trees in a lab the university provided me for 6 years) another story for another day; is this.....

'Spinoza was unique in that he incorporated the influence of such divergent sources as Stoicism, Jewish Rationalism, Machiavelli, Hobbes, Descartes, and a variety of religious thinkers of his day.' Quote not mine, but I saw this in his writings, that ability to reach beyond his own thinking. This impressed me to read more.... As for 'reason' some say he was hard to categorize because of these many sources of inspiration.... I think that he proceeded so many Enlightened Thinkers of his time and Spinoza's Ethical teachings took God out of the picture which really ties him in many ways to Kant's 'High Morality, where one learns to do the right thing because its the right thing to do and for no other reward or goal.... Heaven... Hell and the like, Spinoza under great pressure to conform to heterodoxy, the views of the church, stood fast in his belief's, to where he was persecuted and ostracized and had to relocate.... He was a genius, of that I have no doubt.....

Now if you wish to discuss philosophy that I adhere to and live by I suggest you read up on Jiddu Krishnamurti To me the greatest teacher who walked this planet and his teachings, plus, Taoism, Buddhism and contact me off this discussion group where this discussion really does not belong.

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