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.

@alwayswithgrace

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

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

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

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Hi Reagan (@reagan1mc) – To protect your privacy I flagged your post and asked a moderator to remove your email address. People can easily send a private message to another Connect member by clicking on their username which will take you to their profile page and then clicking the Send Private Message link under their profile description. Reagan you are correct that we should keep the discussion relevant.

Thank you,
John

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@alwayswithgrace

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

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

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

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I want that message to get across to the person who asked…. will that happen now or should I repost with my email removed

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@alwayswithgrace

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

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

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

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Hi @reagan1mc,

Thank you for all the support and information you are offering. You’ll note that I removed your personal email from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted spam etc. We recommend sharing personal contact information by private message, which is secure from unwanted spam and trolls.
Thank you for understanding.

Mentor @predictable (who asked about Spinoza) will be able to view your post, as only your personal email address has been deleted.

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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.

Jump to this post

Hi Reagan, It looks like the moderator has already removed your email address and left your message. When you also use the members username (@predictable) they automatically receive an email notification. So by me tagging him, he will see it but you can also copy the message text and paste it in a private message to him if you like.

John

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@alwayswithgrace

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

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

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

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Thanks for your response to my questions, @reagan1mc. I am pleased to learn of your commitment to philosophy and its possibilities for improving the human condition and the wellbeing of all living things that we know. Perhaps there is a symbiosis in Spinoza’s studies with those of the great early thinker, Aristotle.

I also appreciate your choosing to emphasize Spinoza’s ethical foundation, which “took God out of the picture” and led him to Kant’s principle for doing the right thing. I have a similar preference for treating ethics as a discipline that proceeds from reason (philosophy) and the nature of beings rather than from religion and its mysteries and revelations. I benefited from that epiphany as a result of Thomas Aquinas who held forth on both philosophy and theology 400 years before Spinoza, building his ideas on Aristotle’s thoughts and writings, and (as a scholar in both reality and religion) knew well that ethics can be — and should be –fully articulated without resort to pleas and orders from a god whose nature is known only partially from philosophy.

That said, you are on point in suggesting that most conversations along these lines are off-shore from the discussions we have here on Connect. But I’ll gladly respond to other thoughts you wish to flower and grow if you’ll contact me directly with a private message.
Martin

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You have great strengths to lean upon, it is self evident in your prose…. You are not alone….

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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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Thank you for helping me figure out how to reply directly to this man. I do enjoy someone who has an intellect I can meet head on, it appears he has this quality. I will surely know soon….

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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.

Jump to this post

Glad to help, he does ☺ Amazing thing intelligent conversation…

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I always knew my ana was high and the doctors diagnoses postive ana. Ok l understand that but the one doctor said l dont know why it can be false too. Then l go to the mayo clinic diagnses strong positive ana. I was told we tested everything and it could be your previous diagnoses. Then l have portal hepatic fiscular vein ok. So you have to have shunts put in and then told one shunt blood not flowing and then it a slight drip of blood. Then l come home to follow up with a rheumatologist which l would think thats appropriate because of the diagnoses to make sure nothing get worst then it is. I go to a new rheumatologist and he looks at my records and says you been to the mayo clinic if there was anything wrong they would contact us to tell us how to treat you. But l will run your test again and if there is no change you can follow uo with me in 6months. If their is l will call you and start you on meds. Well he was so sure of himself and l was having anxiety because thats what l was told many times. Today l get a phone call saying we are calling in a prescription for inflammation and pain. When l spoke to the nurse l am now told to make an appointment for 2months. Do l still have anxiety???. Did l go to medical school??? No but l not really sure. Or should my doctors go back to school??? Yes. Thank God for him keeping me alive.

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My 21 year old son is having the same problem. He has 6 bulging lumbar discs that no one will treat or give him pain meds for, decreased reflexes and feeling in his legs, intermittently has to self cath because he can’t urinate, frequent constipation, wicked insomnia, memory issues, days when he struggles for words. He has tried everything that might provide answers or relief from the pain. He has been suspected of being a drug seeker. He isn’t. He is seeking help finding answers and some relief from the misery. He has a mood disorder and PTSD from a good friend’s suicide, and it seems that he is judged more harshly because of that. This has been a 2 1/2 year nightmare, requiring him to leave college, live at home, be isolated from friends, and he has been forced to put his life on hold. The future is a big uncertainty, and compassion from the medical community is rare. As a disabled nurse who practiced nursing, mainly in the ER, for 30 years, I do firmly believe that medicine is broken and that too much emphasis is placed on testing, and far too little emphasis is placed on listening to and thoroughly examining the patient. I feel so helpless. Doctors do not want patients to have advocates, especially a mother who is a very experienced, intelligent professional nurse. My family on both sides is full of autoimmune diseases, and I am disabled with 8+ autoimmune diseases and a wretched back from hard work and play and connective tissue issues. This all puts my son at higher risk. We also live in Oregon, where autoimmune diseases are much more common. I pray daily for someone, anyone in the medical world to care enough to really SEE him, and care enough to help him instead of passing him from Specialist to Specialist in vain, while the bill collectors harrass him, further increasing his fear and anxiety, which is not what he needs at all.

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@alphacat

My 21 year old son is having the same problem. He has 6 bulging lumbar discs that no one will treat or give him pain meds for, decreased reflexes and feeling in his legs, intermittently has to self cath because he can’t urinate, frequent constipation, wicked insomnia, memory issues, days when he struggles for words. He has tried everything that might provide answers or relief from the pain. He has been suspected of being a drug seeker. He isn’t. He is seeking help finding answers and some relief from the misery. He has a mood disorder and PTSD from a good friend’s suicide, and it seems that he is judged more harshly because of that. This has been a 2 1/2 year nightmare, requiring him to leave college, live at home, be isolated from friends, and he has been forced to put his life on hold. The future is a big uncertainty, and compassion from the medical community is rare. As a disabled nurse who practiced nursing, mainly in the ER, for 30 years, I do firmly believe that medicine is broken and that too much emphasis is placed on testing, and far too little emphasis is placed on listening to and thoroughly examining the patient. I feel so helpless. Doctors do not want patients to have advocates, especially a mother who is a very experienced, intelligent professional nurse. My family on both sides is full of autoimmune diseases, and I am disabled with 8+ autoimmune diseases and a wretched back from hard work and play and connective tissue issues. This all puts my son at higher risk. We also live in Oregon, where autoimmune diseases are much more common. I pray daily for someone, anyone in the medical world to care enough to really SEE him, and care enough to help him instead of passing him from Specialist to Specialist in vain, while the bill collectors harrass him, further increasing his fear and anxiety, which is not what he needs at all.

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My gosh..you live in Oregon? The pot clinics have their own doctors. Why haven't you gotten some marijuana for him. My son was diagnosed with brain cancer and told he had 2 Mon to 6 months to live.
There were 5 doctors from 5 different Drs. All but one agreed. He went for surgery. They opened him up and he had nothing wrong with him. A week later he had a grand Mal
Seisure. Sorry spelling. I am so done with doctors. My recent 3 weeks in hospital and you are so right. Tests tests and more tests. And nothing. Take a tylonol..geez. What are they teaching them? Do they make a percentage on tests?

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OMG, they cut your son’s head open then they told you that there isn’t anything wrong with your son. I hope you have a good lawyer. How is your son today.
So sorry that happened.

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Hi:
I am going through the same thing but your symptoms seems much worse. I also went to the Mayo Clinic and I have to go back for a more few tests. On my-chart one Dr. indicated that I have Functional Gait Disorder, which I disagree with but I need the other tests. So, I know how you feel. Did Mayo give you any sort of diagnosis? Please get a copy of all of your records and see if they missed something, sometimes that happens. You have to be your own advocate.
Take Care

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Hi:
I had a really high ANA and negative on the SSA and SSB for Sjögrens but I also had dry mouth and gritty eyes and my Rheumatologist suggested a lip biopsy. According to the report I have Sjögrens but another university said I do not have Sjögrens, so who do you believe? Well at that time I did have a high ANA dry mouth dry and gritty eyes very dry skin so sometimes you have to decide if your Rheumatologist is right. I believe that I have Sjögrens and the Second University could not Diagnosis me because my ANA was boarded line high and I didn’t have the typical Sjögrens lip biopsy pattern. Are you kidding me. Since when do we all have to have a typical pattern. One pill fits all. How ridiculous.

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Redhead…I agree with you. The night of my ambulance ride to the hospital, they could not get me into the University of Texas. So, the nearest hospital was Baptist. During my three weeks in and out of Baptist, was one contridiction after another. The one that truly upset me was that I was diagnosed Stage THREE Kidney disease by my the doctor at the University Hospital. But, Baptist doctor said, my Kidneys look perfect. He thought I must have something wrong. I checked my on line record an sure enough, there it was STAGE THREE KIDNEY disease.

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