My Story! New on site! Neuropathy problems
 

:grouphug: 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! :grouphug:

Hello Linda, it's a pleasure to meet you too. Welcome to NeuroTalk. :)

Gosh, I don't know where to start. I really feel for you as it sounds like you've been through some terrible times. I think the best place to start would be to give you a great big hug :hug: and let you know that we're all here for you now.

You're welcome to join in any forum at all that you feel comfortable in, but maybe the places to begin would be :

1. The Autoimmune Diseases Forum : http://neurotalk.psychcentral.com/forum44.html

2. The Peripheral Neuropathy Forum : http://neurotalk.psychcentral.com/forum20.html

Welcome again; it's good to have you with us.

Thank-you Koala
 

Thank-you Koala for giving me a warm welcome and letting me know the best forum to possibly join. It has been a very rough road for me. I just hope they can find out what is going on with me. Very scary not knowing the unknown and also very painful! I appreciate your very caring and thoughtful reply! That warm welcome you have given to me really means alot! Thank-you! :hug:

Sorry for your troubles and difficulty in getting a correct diagnosis. I hope you get some solid answers very soon.

Welcome to NeuroTalk! :Wave-Hello:

Hi Nummycat! Welcome to NeuroTalk! I love your screen name by the way....:)

You've already been directed to some good starting points so I'll just add my welcome and tell you that I'm so glad you found this site. It's a wonderful, friendly place with lots of nice people who truly care.

Welcome Linda!!!!
 

I am so sorry you have been through so much!:(

Believe it or not, I can relate! I also have a mix of nerve damage and strange symptoms!:eek:

The peripheral neuropathy forum is great, as are other forums! I think you will find help from many different forums here! I do!:D

Just jump right in wherever you feel led to do so!:D

I hope you will find some of the information and some of the support you are looking for!:hug:

Hi, Linda! :Wave-Hello: Welcome to NeuroTalk!

I love your username! As you find your way around, you are sure to find plenty of information and friendly folks. Let us know if we can assist you with anything. :)

Hello Linda and Welcome to NeuroTalk. You have been through the wringer, for sure. I hope you can get some definitive answers soon. Not knowing why you feel the way you do is awful. Please check out the links that our Koala has given you, as well as the many other forums here and make yourself at home.

Glad you found us.
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hi
 

welcome Linda after reading your story made me sad, its not good to be in pain and i know i been sick since 6 year old and now i am 28 but don't give up never give up no matter what, hang in there and from what you told us you have wary supportive husband that the key i find is the family and friends. And again welcome to the forum, i give you 1 BIGGGGGGGGGGG:hug::hug: i hope your husband is not reading this;)

Welcome dear one!
 

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Hello!
I am glad you found Neurotalk -