[LillyLee]

Hey friends!

Here's one lady who is frustrated to almost tears.

Going to see a lawyer tomorrow to see about fighting my denial for SSD. I have been working on getting copies of my medical records. I went to get copies from my neurologist today and after reading them I am very upset.

After my second appointment with my neurologist I asked him if he had a diagnoses was for me. He told me at that time Small Fiber Peripheral Neuropathy and maybe Peripheral Neuropathy Hyperexcitibility as well. (All blood tests have been negative except for a high ESR. My EMG and Doppler Duplex of Legs were normal and scan of brain for MS was normal). I do have degenerative disk disease in the L4 and L5 with small tearing. The L5 disk is touching both the right and left S1 nerves, however they feel it is not impinging on the nerve and do not think that is the cause of my problem.

My symptoms since March of last year have been a burning sensation in my legs and feet, muscle cramping, twitching, deep down constant very painful aching, occasional chill like feeling running down my legs, and occasional limb jerks but that isn't a big problem with the jerking. Tired, tired, tired of hurting. It always gets more painful as the day goes on.

I lost my job last June because of this. My legs hurt so bad and feel weak to the point that I have to use stair railings to go up stairs, use wheelchairs or scooters to grocery shop, to attend my children's activities, to just get around the neighborhood. I don't even venture out to my back yard because it's too painful. Miss being able to do that. Just making an easy meal for my family or doing light housework is hard with many rest breaks that don't help the pain a lot.

Basically I feel isolated in this house because it's too painful to out and I only go do what's necessary to take care of my family.

Driving is painful. I only drive to take kids to school, school activities, out to get groceries, or to medical appointments where I live. I have family that lives out of town but haven't been able to handle the pain to go visit them in months. Especially need to see my elderly parents (my dad's health is very poor) but I'm literally banging my head on my car's headrest because I hurt so bad when just driving around town here to take care of the necessities. (Sound crazy, don't I).

I guess I'm getting kind of off track here but read my neurologist's medical reports and they don't even once mention the SFN that he had told me he was diagnosing me with at my second appointment. During the last two visits he just mentions giving me medication to try for Restless Leg Syndrome. What!? (I've tried using Gabapentin, Amitriptyline, Horizant and now trying Neupro patches). The jerking isn't a huge problem, it's all the pain, doc! I've read that Restless Leg Syndrome isn't extremely painful, just mostly disruptive as I understand it. I'm in a lot of pain that is keeping me from being able to function like a normal human and enjoy life without constant pain. My neurologist seems like a very nice person but I don't feel like he has listened to much of anything I've told him.

I'm beginning to think about getting another neurologist. Like I said he seems very nice but I really gotta wonder if he's heard much of what I've said. I really, really hate new doctors. They make me nervous and I'm always afraid of getting someone else that's arrogant and worse than who I already have.

Sorry to vent. I just needed to get it out.

Peripheral Nerve Friends...do you think my symptoms are SFN?

Thanks All!

LillyLee

[ginnie]

I hear your frustration. Therre is nothing worse than pain not being taken seriously by ones doctor. DEFINATE get another opinion. I also have some information on a different kind of doctor. They are called physiatrist. They specialize in pain first, but then try to reach you at the cellular level to help. I have PN, maybe RSD, I don't really know. The doctor said both are lousy, so I am treated for pain issues. My physiatrist got me on some suppliments. I never believed in them before. I take B12 shots, and believe it or not a year later my walking was better. I use lidoderm patches and a narcotic when I need it. Not often I am glad to report. Last year I was in a wheelchair, this year, I am walking. Had torn ligaments and archllies, which set off the whole mess.
Don't take no or indifference to your pain. Your quality of life is at stake. I heard that in your post. You need to get some of your life back if at all possible. Do you have insurance, to where another appointment would be OK? Your PCP can give you a refferal to another neurologist. Also if you post where you live near, maybe someone on NT will have the name of some compassionate neruologist. Your PCP may also know about the physiatrist.
I wish you all the best. Have hope things can get better. ginnie

[SFNgirl]

Hi LillyLee, I have been diagnosed with Small fiber neuropathy, and your symptoms sound very similar to mine. Pain is terrible, constant in my feet, often climbs up rest of body. Freezing burning pain (sort of like the freezing chills you describe), cramping in calves, muscle jerks, etc. I too have stopped doing most things, but trying really hard to keep life on track. Its very difficult, but dont want my kids to worry and dont want to give up. I have just started lyrica, will let you know how that works. I tried gabapentin w not much luck. Many good recommendations in these threads for supplements and possible causes, I have just started to explore, new to this too. You absolutely need a new neurologist. And I am sure eventually that doctor will do a skin biopsy which I think is the only way they can diagnose SFN, though the symptoms alone certainly sound like it.

[tomboy mel]

Originally Posted by SFNgirl

Hi LillyLee, I have been diagnosed with Small fiber neuropathy, and your symptoms sound very similar to mine. Pain is terrible, constant in my feet, often climbs up rest of body. Freezing burning pain (sort of like the freezing chills you describe), cramping in calves, muscle jerks, etc. I too have stopped doing most things, but trying really hard to keep life on track. Its very difficult, but dont want my kids to worry and dont want to give up. I have just started lyrica, will let you know how that works. I tried gabapentin w not much luck. Many good recommendations in these threaçds for supplements and possible causes, I have just started to explore, new to this too. You absolutely need a new neurologist. And I am sure eventually that doctor will do a skin biopsy which I think is the only way they can diagnose SFN, though the symptoms alone certainly sound like it.

I have SFN too. The skin biopsy determined this. No matter what symptoms (have the same as above) I have, the test results are key to diagnosis. I too just started Lyrica and will let you know if it helps.
I pray for you all.

[Susanne C.]

Enough of your symptoms sound similar to mine as well, to be SFN. I also have restless leg syndrome, have ever since I was a little kid. I have hereditary neuropathy, so both SFN and large fiber. I am not sure if my pain is as bad as yours, I am on pain medication which allows me to be active, but driving is awful. Within about 15 minutes I get terrible pain in my back.
I also have the L4, L5 ruptured discs, had a laminectomy for sciatica in 2000.
It can be very difficult to get diagnosed and some people never get a satisfactory answer. My neurologists just said there was nothing they could do, good luck.
I hope that you get some answers. Does anyone in your family have PN?
Try to get a skin biopsy if you can.