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lisamarie81
@lisamarie81

Posts: 2
Joined: Feb 21, 2018

Help appreciated - multiple symptoms, auto-immune always high

Posted by @lisamarie81, Wed, Feb 21 2:32pm

Hi everyone!
I may be in the wrong area of this group but I just don’t know where to begin because my symptoms cover a multitude of areas.
I have just about given up on the medical profession and am trying to at least get an answer or pointed in the right direction.
They all say the same thing – not sure what’s going on exactly, but it “could” be XYZ so here’s some medicine to help. Nobody seems to be the right Dr to put everything together.
It’s getting very old

Symptoms are:
** Blood work almost always shows extremely high sed rate, Thyroid Peroxidase, C Reactive. Tested for every disease under the sun and all negative (many more than once)
** Extreme sporadic joint pain – it travels, NEVER in the same spot, NEVER any swelling or redness at all, ongoing, over a year now, flares up in different locations in my body at different times. Burning and tingling sensations. Will wake me at night. Pain brings tears to my eyes. Nothing I take relieves it.
**Double vision – regular basis, both eyes, ongoing 3 years (side by side double)
**Spasming eye/seizures – sporadically throughout the day, right eye, ongoing 3 years
**Significant ringing in the ears – regular basis, both ears, ongoing 3 years now
** hearing loss – minor, high frequency mostly
**“Fullness” in the ear – regular basis, both ears, ongoing, 8 months now – (ear specialist said no fluid detected in the ear so not an infection, based on testing and other visits, not Meniere’s disease, attempted 3 Eply maneuvers, all unsuccessful)
** extreme vertigo – regular basis, ongoing 8 months now, on medication to help, when I am off the medication I throw up daily and walk into things.
** Weakness and fatigue moreso than the past
** tripping and falling occasionally (my poor bloody knees)
** severe random chest pain last year like I couldn’t breathe . Went on for almost a week. Nothing showed up on any testing. Then it went away
** Bladder/incontinence issues – started about 9 months ago
** Sleep apnea – about a year now, occasionally

Testing has included multiple blood draws. Everything they can think to test me for – all negative. The only things that strike out as odd are the high auto immune tests results
Had an MRI on my brain and spine – brain showed multiple lesions, spine did not have any
Had a spinal tap as well – results appear negative, but that’s me deciphering the online write up. Have not seen a dr yet.

ANY help, direction, suggestions appreciated. I’m so very very frustrated. Everytime I think I’m getting somewhere with a new dr I hit a brick wall and am back to square one.
Thank you

REPLY

Please if you seek more answers to help – ask away. there is many things to cover here, so I'm open to all and any questions that may help. Thank you

Hello @lisamarie81,
Welcome to Mayo Connect. I'm glad you found us. Thank you for sharing your symptoms with so much detail. I'm tagging other Connect members who also have difficult to diagnose autoimmune health issues to see if they have any suggestions for you. @lisabeans, @taterjoy, @robbinr, @techi do you have any information or suggestions you can share with @lisamarie81

@lisamarie81 you've done such a good job of listing your symptoms. Do you have any upcoming doctor appointments? I would recommend keeping the list with you and maybe a daily journal of some sort with the list to document pain levels if you have them or any other specific symptoms and then share them with the doctor to see if it helps…assuming you haven't already tried this approach.

Hoping you find some answers soon.

John

Well today was my second infusion of Rituximab. They tell me this will help me in the long run. When I arrived at the hospital and infusion center. I woke up last night and this morning with pain I could not overcome. I dream of the day I might have no pain. I spent 7 hours with infusion and preparation for my comfort during infusion. I am exhausted tonight. I am going to bed tonight and pray for comfort

@lisamarie1 l had a similar situation. And l went to the mayo clinic because on of my records it said l had autoimmune encephalitis and autoimmune encephalopathy so l couldnt figure out what this could be and some of the symptoms you are having l had also. And doctors who cared and then find out later they retired or moved so l had to get a second opinion so l went to the mayo clinic just to find out some of the diagnoses on my records were misdiagnosed. I had one doctor tell me my ana was high and she did the test twice just to tell me later that it could be positive but really be negative because even healthy people can have a postive test. But l knew it had to be something l was falling, slurred speech, confused, couldnt walk to go to the bathroom, sometimes l would blackout, unconscious and sometimes conscious, couldnt hear, numbness in my legs and feet and ammonia levels high. Just to find out after many hospital visits, doctors vusits just to find out l had autoimmune encephalitis/encephalopathy because of my ammonia levels. And the hepatologist at the mayo clinic said it will fluctuate and he asked me if you know when its going to come on. Sometimes l do and sometimes not but lately l can tell. And they wanted me to go to behavioral therapy because they said they can show you what to do when its about to come on. And then the neurologist there said if it happens and you go through those symptoms to have your ammonia levels checked. And my sister always says l dont know why you went all the way to the mayo clinic. I told her to get a second opinion and l would do it again. And now she is having problems but l pray for her and l am trying to tell her to get a second opinion because your not getting any answers. And she just came out the hospital and they think she has dementia and she cant see a doctor for 2months and she has headaches everyday. So we have to be our own advocate and look out for yourself and definitely pray for help as you search for the right doctors
Because whether they want to admit it or not they just might not know. We are all different and our pain and bodies are different and we just want them to listen and help or tell you someone who dose. And if they dont know someone to let you know instead of running test and wasting your time and money. So if you can go to the mayo clinic that would be great if not there are other great hospitals and read up about autoimmune diseases. There are lots of websites and there are clinic that specializes in autoimmune disease. We have an arthritis clinic and they specialize in autoimmune disease. I hope l have been a little help .

Have you seen a rheumatologist? If so, are you able to see another one for a 2nd opinion? I have been to 3 before I found one who would truly listen. I have an undiagnosed auto immune issue for over 3 years. I ask I have vertigo, migraines, an inflammation issue of the chest (feels like a heart attack), joint pain, swelling and muscle pain. I do get numbers and tingling, burning pain. While most labs are negative, I am doing much better on plaqinal and arava. I would keep pushing through doctors until you find one willing to listen. Have you seen a neurologist? If they found lesions on your brain, did the look into ms?

@lisamarie81 Hi, Lisa. We are regularly chewed out when we try to help the diagnosis along, even when the docs don't have a guess. So I won't try to diagnose, but to tell you that you have almost the identical package of symptoms/signs I have. And same with Techi and Lisabeans. All of the autoimmune diseases in the misfolded protein junkyard can be very difficult to diagnose, even if you get a SERUM FreeLite(c) assay and proteinuria assay. And when you don't have a doc who will listen, it is plain hell. So I suggest a couple things. First, get info on Amyloidosis, particularly hereditary Transthyretin wild type. Go on the Alnylam.com and Mayo sites and NIH.Gov and look at their information. Next time a doc refuses to follow through, simply ask for the doc's full name so you can sue for malpractice. Third, look at my full story at https://bit.Ly/1w7j4j8 in the Amyloidosis folder. Finally, look on the Mayo site for Amyloidosis support groups. They are all over the country. These groups are the best source of finding helpful doctors. Some doctors who will help are rheumatologists, others are cardiologists, others oncologists or hematologists. Most important, keep going until you find one who will help you. It has taken me several decades. Also check with the alumni section of your favorite medical schools…Mayo, Sloan Kettering, Stanford, etc.

@lisabeans

Have you seen a rheumatologist? If so, are you able to see another one for a 2nd opinion? I have been to 3 before I found one who would truly listen. I have an undiagnosed auto immune issue for over 3 years. I ask I have vertigo, migraines, an inflammation issue of the chest (feels like a heart attack), joint pain, swelling and muscle pain. I do get numbers and tingling, burning pain. While most labs are negative, I am doing much better on plaqinal and arava. I would keep pushing through doctors until you find one willing to listen. Have you seen a neurologist? If they found lesions on your brain, did the look into ms?

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It takes time to see different Rumies. I gave up after two and went back to my general who fed Morphine. I finally went to the U of Texas medical clinic. If I lived in my home state of Mind. I WD have gone to Mayo. The main thing is they are teaching facllity.. They will try every test possible to fine an answer. My Rumi at Texas medical spent one hour with me on first visit. Next visit neatly the same. She looked at me and said you do not have Fibro. I am going to treat you for Rumatoid arth. But I also want you to see an oncologist. I now have strong meds that my kids don't want me taking and no addictive pain meds. I had an infustions yesterday and today I am tired ad it takes about 7 or 8 hrs but today no pain. I also found out I had stage 3 kidney disease from addictive drugs. St least I am being treated. I am 76. If they must use me to help others go for it

@lisamarie81 One thing I forgot to mention. Many autoimmune diseases are progressive, starting with a single cell at conception, doubling after every few hours, and getting into effective impact after 60-80 years. So the important things here are first, keep watching it, staying with the same doctor for decades if you can, and watch for changes to come along. They will, as long as you live.

@oldkarl

@lisamarie81 Hi, Lisa. We are regularly chewed out when we try to help the diagnosis along, even when the docs don't have a guess. So I won't try to diagnose, but to tell you that you have almost the identical package of symptoms/signs I have. And same with Techi and Lisabeans. All of the autoimmune diseases in the misfolded protein junkyard can be very difficult to diagnose, even if you get a SERUM FreeLite(c) assay and proteinuria assay. And when you don't have a doc who will listen, it is plain hell. So I suggest a couple things. First, get info on Amyloidosis, particularly hereditary Transthyretin wild type. Go on the Alnylam.com and Mayo sites and NIH.Gov and look at their information. Next time a doc refuses to follow through, simply ask for the doc's full name so you can sue for malpractice. Third, look at my full story at https://bit.Ly/1w7j4j8 in the Amyloidosis folder. Finally, look on the Mayo site for Amyloidosis support groups. They are all over the country. These groups are the best source of finding helpful doctors. Some doctors who will help are rheumatologists, others are cardiologists, others oncologists or hematologists. Most important, keep going until you find one who will help you. It has taken me several decades. Also check with the alumni section of your favorite medical schools…Mayo, Sloan Kettering, Stanford, etc.

Jump to this post

@oldkarl Thank you for the information

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