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[QUOTE=Bobby Flay;3917412]Dear Aussie:

My blood sugars are so well controlled that if they were any better, I would be considered hypoglycemic instead of hyperglycemic. My A1Cs are 5.9 which is practically unheard of in diabetics. I do not have type II diabetes, I have type I. Meaning, that I am pretty unstable, yet I have kept such good control, remember that I am an RN, they are now skeptical that my small fiber neuropathy is caused by diabetes at all. In fact, they are telling me 100% sure that diabetes is not the cause. I do not have peripheral neuropathy, as is usually the case in diabetes, I have small fiber neuropathy.

The explanation that I have received is because of my autonomic neuropathy symptoms. I have gastroparesis, I have urinary retention, trouble swallowing, numbness in my tongue and jaw, extreme fatigue. I also have most issues extremity wise on my right side. I have no reflexes on my right side, but only minor numbness to the left. I have constant pain on my right side, my hand and fingers on the right side being the worse. This is absolutely not the symptoms of peripheral neuropathy.

I am extremely depressed at this point. I feel that there is no hope and as I had mentioned before, I have absolutely no support system other than this forum. I take so many different meds that I have to carry them around in a medium sized tote basket. I have very little hope. I have no joy except in my children. I have lost everything. My boss told me yesterday that she would be willing to put me on as PRN if I wanted, unfortunately, my entire family depends on me for insurance, I also feel that once I quit working, it is all over, an admission of fatality. I have no hope and I am tired of fighting. I am tired of the pain with every movement, every step, every time I sign something for my children's school work. I just am tired.

At the beginning, I signed up on a forum for Juvenille Diabetes Research Fund, they basically told me that my sugars are so well controlled that they would not consider me a diabetic. This forum finally gives me a place that fits with my symptoms. My doctor, neuro, believes without a doubt that this is what I have. I have nearly all of they symptoms that you all are experiencing. I had previously thought I was just crazy, that the pain was all in my head. I never told anyone about all of it because basically, other people have stress just like me and stress is a relative term. I just shut down because I truely thought I was crazy. I never told my doctor all of the symptoms because I thought he would think I was crazy too and also because I am an RN, I tend to see things differently than most people and I just don't over react. I always thought that it would eventually go away. I think I remember you saying that you have been diagnosed for 1 year. I have had my symptoms for 4 years. That is a very long time to be in pain and lonely and I keep pushing myself because I thought it was all in my head and that eventually it would go away just like you said. It hasn't gotten any better, but much worse. I think that after 4 years you can call it a done deal. I am not going to get better.[/QUOTE]

Hi Bobby, your Ac1 does show you have excellent blood sugar control, I can see why they are skeptical of a diabetic cause as if it was caused by elevated blood sugars it usually presents itself affecting the most distal peripheral nerves first and the symptoms are bilateral, which doesn't seem to fit the bill in your particular case, plus your sugars do seem very good.

I really do feel for you and wish I had suggestions that may help, I am very lucky in that my PN has completely gone now after 5 years of suffering, I only hang out here to help if I can, but I can well understand all the emotional problems that come with nerve damage, the feeling of isolation, depression, pain and lack of interest off other people and some of the medical community is just horrible to say the least, its the reason I posted that letter to non pain sufferers about trying to understand chronic pain, but none the less, know body truly understands unless your been through it yourself.

Take care
Aussie :)





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