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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: Jun 19 12:24pm | Replies (135)

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@joannemm30809

I have all these symptoms and many other neurological type symptoms for almost three years now and many specialists have no idea what to do and most all try to blame it on anxiety BUT I know it is NOT anxiety causing all these daily and relentless Neuro type symptoms.
I've finally pushed my Neuro Dr to refer me out to another neuro doctor in Tampa FL to finally do a SFN biopsy since my neuro Dr does not do them.

Either my symptoms are from a virus I caught in Nov 2019 which I believe was Covid OR maybe it's from this LOOP recorder planted in my left chest area OR could it be due to the Metaprolol heart meds I've been taking for 30 years now??

All these specialists I've seen, millions of dollars in testing of all kinds YET no real answers.

I was on a one year wait list to see a Mayo Dr of Neurology in Jacksonville FL. Dr Cheshire (even though many patients like me who have already seen this Dr gave him poor reviews) the day before I was supposed to make the seven hour drive to Mayo I became sick and tested positive for COVID (again) so I had to cancel my long awaited appointment.

It does concern me though that the Mayo Neurologist in FL has gotten so many poor reviews by many patients who are suffering like I am yet they went to Mayo to see Dr Cheshire and they were not happy with his attitude and comments made at them.

I'm soooo fed up with so many doctors blaming these debilitating symptoms on ANXIETY and quickly prescribing these darn antidepressants.

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Replies to "I have all these symptoms and many other neurological type symptoms for almost three years now..."

I do not like pills - I have a bad liver of idiopathic cause like my neuropathy so I heavily scrutinize painkillers and any drug I think i should be able to avoid.
However, when I had my sudden onset of crippling neuropathy and was sent to a nursing home/rehab for 5 weeks after my long hospital stay, to learn how to live in a wheelchair with limited-use hands, I had the best resident doctor ever. He prescribed an antidepressant in a low dose, Mirtazipine (before my liver turned bad). He said “I’m not even going to ask if a young person brought here in a wheelchair with something terribly unknown going on in her body might be a little depressed”. He also explained it was to help me sleep better, and my body needs good rest. He also explained how some of these drugs have shown other medicinal benefits as well.
When I got home, I weaned off of the Mirtazipine because it made me a little drugged, and I didn’t have nurses to rely on to get me safely to the bathroom and things. Then when my liver suddenly went bad, I now have to weigh the risks and rewards of everything I ingest, so I don’t do the depression/anxiety drugs but won’t say they don’t have benefits for a lot of folks.
But I get what you’re saying about making sure the anxiety isn’t the diagnosis of the “cause” vs the “effect”. We know our bodies- find a doctor who will listen to you. I went to my PCP 19 yrs ago (long before neuropathy) thinking I needed a referral to a cardiologist.. I was having occasional tachycardia and sometimes when running I felt like I was going to faint and would have to stop. He lectured that I was 39, a marathoner, and fit, and it’s just some anxiety going on, normal for my age (and sex). I took one of his prescribed pills before throwing them in the trash. Three weeks later I woke up in a hospital ICU after 3 days on life support. Collapsed while running, “Sudden Cardiac Death”, good ole undiagnosed heart condition that a cardiologist would have seen if I had been referred. By the grace of God, I’ve been told people had been around to perform and get medical help and minimize oxygen loss to brain before medics and hospital took over. My PCP visited me in the hospital, he was in tears as he apologized, and I know that he too learned a lesson with me. So now, 19 years later I try so hard to be a good advocate for my health. It’s too easy to be labeled and put into a group based on “averages” instead of validating that you are either in that average group or NOT. And 19 years later, I humbly say I have not yet mastered my own patient advocacy, but I keep trying as politely as possible.
Listen to your body; also listen to our doctors who know more than us, but be comfortable they are not dismissing us on things they might be able to test. Get second opinions. Listen to the stories of folks in this group - I have found a remarkable amount of validation here, even if it’s not confirmation I’d hoped for. Bless you on this journey!

I sure understand your perspective on doctors and research. By way of causation I posted recently about statins and alcohol consumption being linked. Further, I have a Comorbid malaise which is neurological and may contribute to SFN. It is CFSME, the vernacular being Chronic Fatigue Syndrome, which trivializes the disabling disease. You may want to look into it since you’re getting all these anxiety responses. The largest forum is phoenixrising.me forums. BTW, 7 hours from Jacksonville sounds like you may live in Atlanta, my home? I’ve heard the same about the clinic in Jax and decided not to waste time and money when the main center is reputed to be the best. ‘Hope these comments are relevant.