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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: 5 days ago | Replies (554)

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@rnlorena

I did a two week holter monitor and found out yesterday what I thought was continuous palpitations that I really had sinus tachycardia. The highest heart rate was 183. I was on my way back from Montgomery to see my granddaughter off in the Army and it was in the morning when I left Montgomery to go home around 9:48am that my heart rate was high. I could tell that something was going on but I thought it was palpitations. I went to the ER last week because my heart rate was going up while I was sitting and watching TV. I am now taking a beta blocker to keep my heart rate lower for now. My cardiologist and I discussed my diagnosis of SFN and she told me that she wants me to have a stress test and a Echo to rule out that I have no blockages in my heart. I really thought I had palpitations. I have had them my whole life but not like that. I had no idea. 2 years ago I was having pains like pin prick in my epigastric and upper stomach area. I ended up going to a gastroenterologist and saw an ARNP. I was scheduled for an endoscopy and was diagnosed with silent reflux and I also have chronic gastritis and chronic esophagitis. I had no idea you could have silent. I took pantoprazole since November of 2019 and recently quit taking it. My decision. I had another endoscopy in April and I still have it. I will have to go back and discuss medications. I know that I now have osteopenia and I do not want to keep taking the pantoprazole. I also quit taking my rosuvastatin. My decision. My nurse friend sister was taking statin for 20 years and woke up one day with pain on the scale of a 9 and pains in her eyes. She stopped her statin and got better. They then started her on another statin and her pain started back. I have taking b12 and D3. Three blood draws ago I had high B12, the next one was normal, the last one was high again. I have one more test that was taken for genetics to hear the results of. I don't know if its possible that those pin prick pains I had in the epigastric area could be related to neuropathy. I am thinking my SFN may be idiopathic. I had a rheumatology panel and it was negative for those autoimmune diseases. I know there are others. I have read quite a few of others stories on here.
Question: Have other people started out with pin pricks and went on to have other issues? I am still having pin pricks and my nerve numbers are very low. This started out the first week in March of this year. Everything has been rapidly happening. I do want to pursue Mayo Clinic in Jacksonville.
Question: Is there someone at Mayo that I could talk to about getting an appt for the things I want to pursue.
After reading many stories on Mayo Clinic connect I am getting the idea that if you have idiopathic that what ever happens next will be a surprise. There is no easy answer.
I have been studying this for weeks now about SFN and also medications. I am just not sure where to start when calling Mayo. I live near Pensacola and don't mind driving over there. My cardiologist said she thought it was a good idea for me to pursue Mayo. My symptoms were full blown on the first day. I woke up and had the pin pricks all over. I see that other people who have other symptoms had a vaccination and it started. Some people start with something and it increases. From what I am seeing it depends on the person as to what is happening that day.

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Replies to "I did a two week holter monitor and found out yesterday what I thought was continuous..."

@rnlorena, Since you mentioned that your cardiologist thought it was a good idea to pursue an appointment at Mayo Clinic, can you ask them if they will provide a referral to Mayo Clinic for you? Otherwise, I think you can just give them a call and do a self referral and let them know what your questions and concerns are. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Hi. I am very interested in this particular topic. There’s not often discussion about the autonomic issues with small fiber neuropathy. Because it also affects the artery linings, it can cause low blood pressure and high heart rate. I’ve been hesitant to do anything about mine because I just fear more and more and more medications. So please keep us informed about whether your doctor thinks your case has anything to do with SFN. I am 65 so sometimes it’s hard to know whether things are SFN or typical issues with aging.