[NummyCat]

Hi! My name is Linda and it is a pleasure to meet you all in the forum. I sure hope by me coming here and joining the forum will help me get the support I need and I am hoping to meet new friends along the way!
I have a story to tell and don't really know where to start but I guess I will start at the beginning.

It all started in 1993 when I was in my 30's but I had experienced some minor problems earlier. I began to start having a weird numbness and tingling in my legs and arms but more so in one leg. At first I thought it was my leg going to sleep but then noticed other things going on. Irritable bowel syndrome, migraine headaches and fatique were the main issues. Then I started getting photosensitive to the sun and ultraviolet lighting. Went to a doctor and he sent me to see a neurologist. Saw the doctor and he did several labs and testing but could only find a Sensory, Motor Polyneuropathy. They did nerve biopsy and found it to be long standing and called it heriditary neuropathy.

After that biopsy, I had another attack on my nervous system and got very sick. So my husband to me to University of PA Hospital and started all over again. Systemic Lupus was diagnosed but the neuropathy thing was not considered or thought to be from Lupus, although it was possible so they treated me for CNS Lupus. Labs came back with positive Anti-DsDNA. C-3 and ANA with a positive SPE. There has been a contraversary of me having MS along with Lupus or Lupus itself causing the problems.

Suffered from 1993 until 1995 until they started treating me for CNS Lupus. The Neuropathy actually improved but was still there but not as bad. My life was getting somewhat better but still had my days.

Stayed under treatment from 1995 to 2002 and then went into remission. Felt fantastic. Thought I had my life back! Did great until 2006! Then I had got ran over by a jeep in a parking lot and after that accident I went down hill again. Attack after attack after attack! My husband and I had made a move to another State and since that move it has been a nightmare finding a doctor to treat me!

I just recently had surgery on my spine thinking that was my problem and it fixed some of my issues. But after that surgery I had an attack on my nervous system that has put me down. My Rheumatologist here since I have been in remission tells me my lupus is gone and only tested me 1 time in 6 years I have seen him. The ER tells me to see him. So I got fed up and decided to see a new doctor.

Saw the new doctor and he did an EMG Nerve Conduction test and I am now eat up with a Chronic Severe Demylinating Axonal Neuropathy. So this Friday I am scheduled for an MRI. Because I am being stubborn and not showing much in my labs right now, I am having problems getting treated for it.
Anti-depressants to help ease the suffering! And yet they don't really work.

Not even sure if this is Lupus, MS or some genetic disorder going on. The nerve damage is driving me crazy. I get numbness and tingling all over my body! Head gets numb, neck, face, arms, hands. Carpul tunnel nerve damage now. From my knees down feel dead all the time. And I feel myself getting sicker and sicker and sicker!

Most people I have talked to that have had simular problems have been getting treated for theirs. But they found out why they had the problem with neuropathy. Me on the other hand want to be a bull head and confuse the doctors and am just not getting any treatment except for antidepressants which stink! And I just don't know how much more I can take!
The mess is disabling me something aweful! Maybe by being in here I can get some good advice and tips on how to deal with my problems and some helpful hints on how to ease the suffering.

I am not suicidal by all means but seeing myself get this way and feeling the way I feel makes makes me wish I was an animal in a shelter getting put to sleep. I sit here wondering if it's ALS, MS, Lupus which they are telling me it's not but I think it may be due to me having problems before in the 90's! I'm just at wits end!

So sorry for making my story long. But I hope to meet a few in here that are dealing with what I am dealing with but at the same time meet many that have shared the same experience but am willing to become friends with everybody on the forum.
Thanks for the warm welcome upon becoming a member! I look forward to being here!