Neuropathy: My Journey

Interesting questions @artemis1886. I have idiopathic small fiber peripheral neuropathy and have also been in the pre-diabetes category most of my life so I pretty much fall into the metabolic syndrome category. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Not too long ago I learned there are some connections between neurological disorders and the metabolic syndrome so I started focusing on trying to change some habits and prevent developing diabetes. Here are a couple of references you might find interesting and possibly make some connections for you.

--- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
--- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/

I found an interesting article below yours. One problem I have is when I do not get enough sleep and in too much pain my seizures start up. Nights are a worst. There is an article about polycystic ovaries and metabolic syndrome.
I had a total hysterectomy in 2009 due to elevated enzymes for ovarian cancer. They only found cyst all over the ovaries and uterus no ovarian cancer. In two days Iwent from 165 to 210 and diagnosed with lymphedema. I have wore compression hose 20-30 since 2009. My body is really being weird. I had bought over 5,000 dollars worth of clothes. Now I can’t get into them. It’s all frustrating. I went back in my medical records and found a diagnosis of ehlers danlos which is an autoimmune disorder. I remember the neurologist talking about it in 2002 but did not ask questions at the time just blew it off.

It’s not because of seizure meds. I am allergic to all seizure meds. The only thing I can use is Valtoco 10 mgs% diazepam 10 msg nose spray.
Plus on 20 msg potassium twice a day. My body does not produce potassium and having magnesium problems.

I finally saw Dr Oaklander. I was kinda disappointed. I learned my tremors are caused from my neuropathy. I learned that if I would have remained on IVIG therapy after age 18 I would not be in the shape I am in now. I was on IVg therapy from age 10-18. I am 61.. she says she would start me on IVIg if I lived in Boston but I live in Texas. She told me she would talk to a neurologist in Houston to see if they can find someone in Dallas to treat me. These are the doctors I should be seeing immunologist, rheumatologist, neuromuscular neurologist and a neuro physical therapist. A lot of doctors. Other than that nothing else happened. Mine has progressed pretty bad in the last year with my balance and tremors. It’s like impossible to be treated for this. My neurologist just swept me under the table telling me to come back once a year.

For those that wanted my prescription cream I finally picked it up from the pharmacy.

My diagnosis was severe axonal sensorimotor polyneuropathy and small fiber neuropathy autoimmune but no one can figure out the autoimmune part test negative for everything but elevated sed rate and plus one other thing. It’s moved beyond severe according to Dr Anne Oaklander. My reflexes were not working and she stuck a needle in me legs and hands to see how much feeling I have left. None below me knees and hands. I have to say it was weird watching a needle being stuck into you and not feeling it.

Prescription Cream for neuropathy
Pain cream
2% Bacflofen
6% gabapentin
10% ketamine HCL
2% cyclobenzaprine
10% Diclofenac Sodium
2.5% tetracaine HCL
25% propylene
10% lipoderm

What is the name of the cream?

It does not have a name. It is a compound pain cream that my neurologist gave me. I am allergic to gabapentin by mouth but I can take it in cream. I have stomach ulcers for over 10 years so I can’t take anti inflammatory pills.

I just sent Dr Oaklander the additional information. She is not going to help me find all the people she recommended. I am so frustrated. I kinda had a melt down when she said I was on my own since I live in Texas. I am ready to move to another state.