← Return to Eyes and Neuropathy

Discussion

Eyes and Neuropathy

Eye Conditions | Last Active: Dec 23, 2023 | Replies (299)

Comment receiving replies
@rnlorena

Rachel,
I still have the burning, pin pricks and palpitations. My eyes really bother me. I am still seeing the Neuro opthalmologist who will check the nerves in my eyes along with other things. I have been having fasciculations that just started up. Have had one or two here or there but It is funny because they are on one side. I have been having them in my left eye lid, the top of my head on the left and my left leg. I noticed when the small nerve fiber first started and the pricks were going off all over that they would sometimes be all on one side and sometimes the other and then just all over. I do get the palpitations which I am taking magnesium and they come and go. I had them when I was younger but they were different. I gave up most all caffeine but will have some occasionally. I know that caffeine can make them worse but. I have had some caffeine and don't have them then they suddenly show up. I had to get a new Dr. recently a general practitioner and I am up in the air about her. I told her on the first visit that I was anemic last year and I had taken something for it. My bloodwork was checked by my other Dr. and it was back to normal. My new Dr. did bloodwork and I looked it up on the patient portal. I saw reds and was concerned. I had to call them. I got a call back and they said I am slightly anemic. They didn't say to do anything until my visit. I hate waiting. I could have just started up the optiferin C again. I am losing my trust in the medical community. I have never ever had to call the Dr. I always get a call whether the blood work is good or bad. I am upset about that. I have idiopathic SNF. I have read up on all of this. I am repeating myself from before but last year in March I decided to retire from work. Two days later I woke up with diffuse pinpricks all over. Then in April I woke up on a Sunday and felt strange sensation in my chest and I thought to myself that it was palpitations but it wasn't. After a heart monitor it showed my heart rate was 183. I had other tests and nothing showed up for a cause for the increased heart rate. If I am correct the SNF can affect the autonomic nervous system. I did ask my Dr. about a referral to Mayo and she basically said she wants me to go back to the neuro Dr. again and if they can't find anything she might get me a referral. She basically said that a lot of money could be wasted for nothing. That ticked me off. The hardest part about all of this is not knowing. I try not to think about what is coming next. I did connect with a group of people that had their coronavirus shots and some of them started with symptoms like mine. Some had symptoms right after the shot but I was curious and asked if others who had the shots had them after and how long after. I was not surprised. I wondered if mine could be caused by that. I am not reading much about anyone that is checking into that. I would love to go to the Mayo Clinic and see if they could come up with anything or could give me more information. I was checked by neuro for heavy metals, some of the autoimmune, and genetics. Nothing has been found. My Dr. is associated with Baptist hospital here and they are affiliated with Mayo. Do you know if my doctor were to send my records to Mayo and request an appt could they turn me down? I consider myself luckier then most to have what I have and not what others have. I thought Mayo would be a good place to go because the Doctors may know more than the Doctors that I have been seeing. My last visit to my neurologist he said," well we know there is a cause we just don't know what it is". UGH! I know what medications are and what they are used for but lately I want to chuck them all. I am taking metoprolol for my heart rate but it can cause palpitations. Hah!. I have to take pantoprazole for silent chronic acid reflux and chronic gastritis. I have take it for two years. All my dexa scans have been good up until the last one. I was told from the beginning that it could cause osteoporosis. Well I know have osteopenia. It is very frustrating!!!!

Jump to this post


Replies to "Rachel, I still have the burning, pin pricks and palpitations. My eyes really bother me. I..."

@rnlorena I am truly sorry for all that you are going through and understand how it is draining, confusing and frustrating.

There is no way to know if Mayo would turn you down. Given your plethora of symptoms, I suggest you get the ball rolling and apply to Mayo. Here is a link to apply:

- http://mayocl.in/1mtmR63

If you are not settled in your mind on your current diagnoses by your current doctors, and feel you still need to be evaluated by medical doctors at Mayo, then go for it and apply.

If they deny you, for whatever reasons, and do not feel they can further assist you, then you can apply to Mayo's Pain Rehabilitation Center's 3 week outpatient rehab program. Here are links about the program and a discussion about my experience:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/request-appointment/ptc-20481913

- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

Mayo PRC teaches folks who have chronic conditions to better live with those conditions, physically, emotionally and behaviorally. If you take opiates or other chemicals they will wean you off safely. Keep in mind that opiates can cause hyperalgesia which means they actually induce pain. This is why opiates are meant for cancer patients and acute conditions only. PRC turned my life around and I highly recommend it.

I hope I've helped and given you food for thought. Advocate for yourself. Work on a plan of action and decide how you can enjoy life and learn ways to get the most out of yourself. Keep your chin up and keep hope alive! What might you do next? What is your next move?