New to neuropathy, terrified and seeking advice from you guys

Hi @centre, There is a discussion I started in the Aging Well group that might be helpful. I have balance issues too and I can't walk very far due to back problems.

-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

I took a hard fall last winter going into an farm store because I missed a low entry concrete slab and didn't pick up my foot. I did a header into the glass door and fortunate for me the glass didn't break or crack and I semi caught myself on the way down. I've developed a senior shuffle for the winter time but sometimes I forget to be careful. I do have a cane but I haven't used it for a long time. I bought some trekking poles that help more than the cane. They also help me walk with my body and head more erect. They make walking a little safer for me -- https://www.amazon.com/gp/product/B00WTUVBMA/ref=ppx_yo_dt_b_search_asin_title

I have some questions for anyone who has Paroxysmal Supra-ventricular Tachycardia. It has been awhile since I posted. I have SNF that is idiopathic and its non-length dependent. I have the pin pricks that are all over including the eyes. I was diagnosed last year with the SNF. I noticed a funny feeling in my chest last year and I thought it could be my palpitations acting up. I never felt that before. I had a holter monitor and it showed my heart rate was up at 183 so I was given Metoprolol. Well in June of this year I was sitting and watching TV and I noticed the funny feeling again and I checked my heart rate and it was only 97. So I went to another cardiology appt. and had a ZIO patch monitor. I really wasn't expecting anything, however, and I was shocked to hear I had the PSVT. I then went the next day to a Cardiologist who is an electrophysiologist and he looked at the ZIO results and told me that my PSVT was normal. I was not expecting that at all. I told him when my heart rate was up that they gave me Metoprolol and he told me that he doesn't like to give pills and if he had seen me originally he wouldn't have given the Metoprolol. As a health care professional I was too shocked to think about any other questions to ask. I went home and got on the computer and I actually read that it can be normal in some people. I know he is a very good Dr. but I wasn't expecting that at all. I told him I had SNF and he said he didn't know what that was. He said he would look it up and if he had another patient he would then be able to speak to it. I have weaned myself off of the Metoprolol because it is not helping me with that. I was also taking Magnesium for the palpitations but I took myself off of that because of other issues with taking it. I tried to get an appt at Mayo Jacksonville with cardiology but all of their cardiologists are full and are not taking anymore patients. I have been checking to see if there are any cardiologists that have treated and/or familiar with small nerve fiber. I know that SNF can affect the autonomic nervous system which includes the heart, your gut, your bladder etc. I have more questions regarding the PSVT. I also called Houston DeBakey Heart and Vascular and Birmingham and no luck. If I were to have sustained PSVT I go to the ER. Mine is short bursts of it. I appreciate any comments on this. I did read on Mayo about the autonomic neuropathy. First came the SNF then came the PSVT.

I have some questions for anyone who has Paroxysmal Supra-ventricular Tachycardia. It has been awhile since I posted. I have SNF that is idiopathic and its non-length dependent. I have the pin pricks that are all over including the eyes. I was diagnosed last year with the SNF. I noticed a funny feeling in my chest last year and I thought it could be my palpitations acting up. I never felt that before. I had a holter monitor and it showed my heart rate was up at 183 so I was given Metoprolol. Well in June of this year I was sitting and watching TV and I noticed the funny feeling again and I checked my heart rate and it was only 97. So I went to another cardiology appt. and had a ZIO patch monitor. I really wasn't expecting anything, however, and I was shocked to hear I had the PSVT. I then went the next day to a Cardiologist who is an electrophysiologist and he looked at the ZIO results and told me that my PSVT was normal. I was not expecting that at all. I told him when my heart rate was up that they gave me Metoprolol and he told me that he doesn't like to give pills and if he had seen me originally he wouldn't have given the Metoprolol. As a health care professional I was too shocked to think about any other questions to ask. I went home and got on the computer and I actually read that it can be normal in some people. I know he is a very good Dr. but I wasn't expecting that at all. I told him I had SNF and he said he didn't know what that was. He said he would look it up and if he had another patient he would then be able to speak to it. I have weaned myself off of the Metoprolol because it is not helping me with that. I was also taking Magnesium for the palpitations but I took myself off of that because of other issues with taking it. I tried to get an appt at Mayo Jacksonville with cardiology but all of their cardiologists are full and are not taking anymore patients. I have been checking to see if there are any cardiologists that have treated and/or familiar with small nerve fiber. I know that SNF can affect the autonomic nervous system which includes the heart, your gut, your bladder etc. I have more questions regarding the PSVT. I also called Houston DeBakey Heart and Vascular and Birmingham and no luck. If I were to have sustained PSVT I go to the ER. Mine is short bursts of it. I appreciate any comments on this. I did read on Mayo about the autonomic neuropathy. First came the SNF then came the PSVT.

rnLorena I wonder why you're posting here since it seems as if you already know what course of action to take.. And I wonder how you could make appointments whenever .. Very, very post happy you seem to be to this indivual..

Hi @rnlorena, I'm sorry you haven't been able to find any answers. I imagine you have done a lot of searching on PSVT but was wondering if you have seen this article:
-- Paroxysmal Supraventricular Tachycardia - Continuing Education Activity:
https://www.ncbi.nlm.nih.gov/books/NBK507699/

I'm not sure if you have heard about the Mayo Clinic Care Network which might be another resource to help get an appointment and hopefully some answers. Here's a list of members:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

@johnbishop Thanks for the link. I did read it. I have had palpitations since I was younger but those were here and there and no big deal. The ones I have now can last for awhile and they come and go like that. I had no symptoms or that I had PSVT but I had a funny feeling in my chest twice. When I had the ZIO patch I did not notice that feeling. I had no other symptoms. I wrote down in the book when I did feel something. I am guessing that the PSVT is related to the SNF. It is funny that it started right after the SNF. @julbpat said I might want to read about Dysautonomia and I have read about it. I don't think I asked this question to the Dr. but I will put it here. Could you actually have things over a period of years that lead up to SNF. I am not talking about diabetes. I have been diagnosed years ago with urinary retention. I now have chronic gastritis and chronic silent reflux. My gastro Dr. said he thinks I have irritable bowel syndrome. I had a colonoscopy two weeks ago and will be in the office for followup in a few weeks. I was anemic last year took iron and now have it again. I am back on iron. I have connected a few dots. You can be anemic and have palpitations. I am not a Dr. but would like answers but also know there may not be any. It is a quest for me like so many others. I want to evaluate the best I can on whom I should go see. I don't want to be in a revolving door of Drs.

I like your comment about connecting the dots. It's so true. I am in that process right now. My sister, who is two years older, has the same issues that I do, although mine seem more debilitating. For that reason, I assume my length dependent SFN is hereditary, as my Dad and Granddad have many of the same issues - again, not as severe as mine. I see each specialist for each problem (gastro, pain doctor), and I now have the SFN diagnosis to share with them. I accept that there is no doctor here who can handle all of my issues. However, my neurologist did order a consult with UAB. I was given an appointment last May, for this December! Seven months of waiting! UAB suggested that I call frequently for cancellations. That trick finally worked, and I am going this week. So a four month wait, instead of seven. Seems ridiculous. But anyway, instead of self-referral, have one of your doctors do the referral. That seems to work better.
There is a SFN clinic at UAB, so hopefully this neurologist can answer my questions, and help "connect the dots" a little better. Then I can share his information with my doctors here.
There is also a Dysautonomia Clinic in Birmingham, which is able to all the testing for Dysautonomia (tilt table, sweat test). With a doctor's referral (sent twice) and a phone message from me, there has been no response. I'm really not as interested in that diagnosis, because I don't see how it will change my treatment, so I haven't pursued it any more.
I'm using Birmingham because it's a less then 2 hour drive from me.