Living with Neuropathy - Welcome to the group

Hello John. Yes, in addition to my numbness , I have chronic 24/7 pain in my feet and hands. To try and treat the pain I’m taking morphine and oxycodone. I also have a spinal cord stimulator implant. I also have monthly B 12 injections and take alpha lipoic acid , magnesium, rx omega fish oil. Diet changes too. All of these just seem to be chasing the pain. It’s still always there from the second I wake up until I fall asleep. Every day. Ugh. I’m retired on SSDI no at 57, so I don’t have to work any more. Not that I could anyway. This has definitely changed my life. I used to be very active. Not so much now. You have to pick and choose your activities much more. Hopefully it won’t keep spreading, but that hasn’t been the pattern.

"some idiot neurologist coined the term idiopathic"......because he/she was too lazy/busy to really listen carefully to the patient and to explore avenues suggested by the patient who lives in that body.

IVIG is an immunoglobulin infusion. It can be very effective in reversing symptoms in some autoimmune and inflammatory PN cases. There is a study about to recruit participants being run by Dr. Oaklander at MGH to see if IVIG works in people with small fiber PN and no clear autoimmune or inflammatory markers. In a non-random study with 55 patients 74% had an improvement in symptoms after IVIG. IVIG is currently only covered by insurers for about 15 named diseases. I am fighting with BCBS for a chance to try IVIG.

Where are MGH and Oaklander located. Two incidents of cancer plus chemo and radiation probably caused my PN.

Massachusetts General Hospital and Dr. Louise Oaklander are in Boston.

I’m so glad I found your group several months ago, browsed a bit & learned so much. This is my first time to comment on my condition for the mere fact that the fatigue & cognitive skills seem to keep me from posting. So here goes! Roughly 26 years ago around the age of 29 I started having shooting pains along the lower bottom bones of my legs. The first experience was when cold air from the car ac would hit them. My Family Dr. said it was nothing because I’m a athlete & not to be concerned. Not long after that around 1993 I started having stinging & or burning pains all over my body. The weird feelings would jump around on my body at any giving time. The pain would last anywhere from seconds, minutes, hours and even months. Again going to my Dr. They could find nothing wrong with me. I continued my job as a photographer but the symptoms remained along with something new: tiny itchy little blisters that itched so bad it was debilitating. I just lived with it, and postponed going to the dr because I was tired of being told nothing was wrong. My blood work etc..all came back normal. In 2005 my feet began to hurt as if bruises were on the bottom & could barely walk. I had no choice but to go to the dr. Finally my blood work showed my ANA panel was severely high. I get to the rheumatologist & was told there were no autoimmune diseases but had pseudo gout, a calcium related arthritis. No medication worked. I saw the rheumatologist many times. In 2013 I no longer could feel the tips of my fingers & started falling down a lot I had to stop shooting portiture & weddings and changed my career to photographing things that did not move. Fatigue, loosing sight in one eye or the other scared me. This time I was sent to a neuro surgeon, had a mri ( they thought I had a brain tumor). No tumor thank God. Then a total body scan which again showed nothing. After publishing my first coffee table album it was very difficult for me to get to signings, book fairs etc & eventually just disappeared. My rheumatologist still not giving up found I had Chronic Fatigue Syndrome & borderline diabetics. I’m 5’ 11” & weigh 158. Sky high cholesterol my intire life however unable to take statins. Last year I was sent to a surgeon for biopsies in my leg in 3 places. After 3 weeks I was told I was positive for small fiber neuropathy. I was happy they found what was wrong even ecstatic, however the enthusiasm of having a diagnosis was short lived. After seeing the first neurologist he seemed to know nothing of this disease. My rheumatologist then sent me to yet another rheumatologist & she said I was healthy & took care of my self, therefore I’m all good. Now at the age of 55 my fingers and joints are very stiff, still have neuropathy pains, fatigue along with the other symptoms mentioned above, there’s more symptoms but there’s just to many. I am now being sent to a neurologist that understands Small Fiber Neuropathy but I read his reviews which were terrible. I never read the other neurologist reviews. Now I’m afraid to go through the trouble of seeing a third neurologist. My family Dr. has me scheduled for a cardiologist because of cholesterol & a positive test for early heart disease. I’m tired. Not just physically but mentally. I’ve been through the ringer, unable to work or enjoy my grandchildren. I keep my happy face on, plus I don’t complain to anyone but my husband. I never wrote this much in my life & doubt I ever will again. What do I do? My energy level to just get to the dr. or let alone desire has gone.

Hello @photokat, It sounds like you have quite a lot going on. I would like to take the opportunity to welcome you to Connect and thank you for sharing your health journey. You ask the right question - What do I do? I wished I had the answer because a lot of us including myself have some of the same issues. I have idiopathic small fiber peripheral neuropathy which was how I first found Mayo Connect in my search for answers. You are doing one thing that I think is really important - you are asking questions and being your own advocate. The more you can learn about your health issues, the better questions you can ask your doctors to help them get to better handle on what's going on with your health.

I'm also pre-diabetic and started focusing on changing my diet with lifestyle changes after finding a book by Dr. Terry Wahls - The Wahls Protocol. While it hasn't really fixed anything with me, I feel a lot better and have lost a little weight in the process which will help with most autoimmune diseases. She has a great story to tell about removing the symptoms of her MS and going from a wheelchair to riding a bicycle again in a year all through nutritional changes and choices. You can read her story here: https://terrywahls.com/about/about-terry-wahls/.

I've also recently been diagnosed with obstructive sleep apnea and have an overnight sleep study coming up later this week. A home test was ordered by a Mayo doctor who was treating me for lymphedema and through a question and answer session with me setup the home sleep apnea test because I had mentioned to him about feeling tired a lot. It really came as a surprise to me and now I'm learning there are a lot of people with sleep apnea that don't know they have it.

@photokat has your neurologist or doctor provided any treatments or suggestions?

John

Hello @photokat

I would like to add my welcome to you for finding and joining Connect. I can see that mentor, John Bishop @johnbishop has already provided you with some great information so I won't try to add to what he has said. I would, however, like to take a moment to applaud you for advocating for yourself and continuing to search for answers.

After going through so many tests with resulted in "normal" results you must have felt very discouraged. Your persistence in advocating for yourself and your continual search for an answer is just great!

Connect is made up of a lot of us who have had hard-to-diagnose disorders, including myself.

I understand how debilitating fatigue can be. From my own experience I've used, Symmetrel (generic Amantadine). It is used to treat fatigue in MS and Parkinson's patients.

Have any suggestions been made to you as to what you can do for the fatigue?

Teresa

If you live within driving distance of the Minneapolis area our next meeting of the Minnesota Neuropathy Association will be an interesting one. A meeting flyer is attached. I will try to take notes and post them here after the meeting. Unfortunately they don't have videos of the meetings.

Saturday, August 4th at 10 AM
Speaker: William Hoffman of the U of M Medical School
Topic: Stem Cells and Regenerative Medicine: A Revolution Picks Up the Pace
MN Neuropathy Association website: http://neuropathy-mn.org/

John

@johnbishop Thank you John. I fly in to Minneapolis that day but not as early as 10 am.