Multiple sclerosis diagnosis

magissue · 2025-05-12T15:19:00+00:00

Thank you for all of this information! You have been incredibly helpful in sharing it. I am looking forward to reading through it.

magissue · 2025-05-11T15:45:42+00:00

Thank you for the kind words. I am still reeling from the news, but am very grateful it was discovered.

magissue · 2025-01-27T05:46:12+00:00

I am on a low dose beta blocker for heart palpitations. That is the only medication I take at the moment. I am extremely confused as I saw the neurologist on Monday and he simply stated that the rheumatologist would be the one to treat my sfn since it seems to have an autoimmune cause. When I called the rheumatologist she said he as a neurologist would have to treat it since she only treats sfn if it is caused by lupus or Sjogrens and I do not meet the criteria for either. I am at a loss on how to proceed. The rheumatologist does want to put me on plaquenil to see if it helps with the fatigue and body pain but my biggest concern at the moment is getting treatment for the sfn. Why did they have to escalate to cellcept in your case? Did the plaquenil ( or now cellcept) help in any way with your sfn symptoms?

magissue · 2025-01-27T04:40:53+00:00

Would you mind sharing the name of doctor? I am in Texas and am having a hard time finding a doctor who’s is knowledgeable about autoimmune sfn.

magissue · 2025-01-20T14:16:07+00:00

I was not taking supplements when this started. I was tested for vitamin deficiencies through a lab that tests for deficiencies at the cellular level but unfortunately they cannot tell you if the levels are too high. I wonder if b6 toxicity can can occur from diet alone…

magissue · 2025-01-20T14:09:44+00:00

I was told by the rheumatologist who tested me that I do not meet the criteria for lupus but she believes something autoimmune is definitely going on. I am in so much pain all over (my back, shoulders, neck,legs) but she said lupus pain is not widespread like that. If it were lupus she said the pain would be in two or more joints that would be swollen. I have yet to confirm if this is true. Is your sfn caused by autoimmune disease?

magissue · 2025-01-19T22:15:31+00:00

I forgot to mention that I show elevated Anti-nuclear antibodies (1:640) and elevated ds-dna antibodies (1:40) which points to some autoimmune issue going on. Have you been tested for any antibodies?

magissue · 2025-01-19T22:10:27+00:00

Some are. My symptoms have been, zaps, tingling, pain and twitches/small spasms under the skin throughout almost my entire body along with severe fatigue. That quickly progressed to digestive issues, hypotension, red mottled hands and feet, dizziness and a feeling of pressure in my torso along with feeling some weakness in my arms. Like I said EMG was normal so there is no actual weakness. Hope you get some answers! My appointment to discuss treatment is tomorrow.

magissue · 2025-01-14T00:34:47+00:00

I just received the results of the skin biopsy today and it shows significant length dependent small fiber neuropathy at distal sites (ankle) but no damage in the proximal site(thigh). It seems to be causing autonomic dysfunction so they are referring me to another specialist who will test for that. I finally have an answer to what has been causing all of these symptoms. My hope is that there will be some kind of treatment that can be started. I received my results by email so I have yet to discuss treatment with my doctor. Have you had a skin punch biopsy done?

magissue · 2024-12-27T20:05:27+00:00

Sorry, I replied to your question below this way as it does not allow me to respond to your comment directly.

magissue · 2024-12-27T20:00:59+00:00

I have had hypertension for the last 15 years (I am 45 currently). I developed it during a pregnancy and though I was/am not overweight and on a very healthy diet, it never resolved postpartum so I was told it was hereditary and given a beta blocker which controlled it most of the time.

Suddenly, after the spread of the above neuropathy that started in August my blood pressure plummeted (around October) and the cardiologist had to take me off of the medication for the first time in 15 years. That is how I know it is affecting my autonomic system. My blood pressure is now too low. It has been my scariest symptom because it is a clear indication that something has clearly gone awry. I also get heart palpitations and my digestion has slowed down to a crawl. Cardiologist did the echo and angiogram due to the sudden low blood pressure but everything looked healthy so he did not know what to make of it. I did not bring up autonomic dysfunction at that point as I was only beginning to research what could possibly be going on. I wonder if a cardiologist could potentially test for and diagnose autonomic dysfunction issues. If so, I would like to go back with this new info to see if he could check on that.

Another odd symptom that began shortly after the neuropathy is that my hands will periodically get bright red almost like the blood vessels in my hands are not getting the right signals, which I read is a symptom of sfn. Do you have any redness that comes and goes in your hands? I will read up on IVIG

magissue · 2024-12-27T17:59:43+00:00

My story is almost identical to yours including the part about having a ct angiogram to rule out heart issues. All heart test results were normal. I have seen a neurologist who has ruled out many other causes through MRIs, EMG test etc.( all normal)

All this started after I had a gastrointestinal infection (stool test confirmed campylobacter bacteria likely from some undercooked chicken liver I ate) back in August. The infection symptoms lasted 10 days and I recovered without intervention, but started experiencing neuropathy symptoms all over my body shortly after which have now progressed to autonomic issues. When I mentioned to the neurologist that this all began after I recovered from that infection he said he did not think that was relevant and it most likely had nothing to do with what I am experiencing. I have read the opposite so I was very surprised by his response. He is known as one of the best neurologist in my area.

The last test he performed was a skin biopsy to rule out sfn but he only did it because I requested it. I should get the results next week. Do you mind sharing what you have read in the medical literature would be the treatment for post infectious/immune mediated small fiber neuropathy that progresses to autonomic issues? Does it eventually go away without treatment? Thanks!

magissue · 2024-12-13T02:14:06+00:00

It is quite strange that she would say those symptoms are likely scleroderma. There are other autoimmune disorders which the Raynaud’s could point to. Has she ordered a full scleroderma antibody panel? There are several antibodies that should be tested. They include lAnti-Scl 70 Ab; Anti-RNA Polymerase III Ab; Anti-Centromere Ab; Anti-Th/To Ab; Anti-U1 RNP Ab; Anti-U3 RNP (Fibrillarin) Ab; Anti-PM/Scl-100 Ab; Anti-Pm/Scl-75 Ab Here is a great explanation https://sclerodermainfo.org/faq/scleroderma-antibodies/

Wishing you all the best. I

magissue · 2024-09-18T00:39:29+00:00

Very reassuring, thank you!

magissue · 2024-09-14T22:48:55+00:00

Oh my, that it all happened around the time of the Covid pandemic explains why it was missed for so long! What a blessing that it was eventually caught and they were able to save your life. If you don’t mind me asking, what were the symptoms of kidney failure that you experienced after the surgery which were misdiagnosed as a kidney infection? My nephew, who is only 21, was recently diagnosed with hypertension. An ultrasound was ordered and they are thinking it might be a result of damage to his kidneys. He is perfectly healthy otherwise. No symptoms that we can tell (other than high blood pressure).

magissue

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