Hi everyone,

I was doing some research on my recent MRI results and found this forum. I guess it just helps to know there are others out there experiencing the same or similar problems I am dealing with. Sometimes it is a lonely journey we are on especially dealing with a life of chronic pain and now, for me, losing mobility in my legs.

I currently am in the process of getting the neurostimulator implant for pain control. Over the course of 20+ years of oral medications for pain control, I have run out of options. 80mg of morphine every 12 hours does nothing to help the pain. But, after my recent MRI results, it does not look like the implant is even going to be an option. The compression on the spine has advanced to the point I don't think I will be able to avoid surgery, which has been my goal. Anyway, just waiting for my Neuro Surgeon/Pain Specialist to review results and see what direction I need to take now. Waiting for answers almost always seems to be the hardest part of any process.

Anyway, I am looking forward to exchanging info, experiences, and yes, complaints, from other members.

Kat

Welcome Kat...ah the waiting for answers from the docs, that can seem like an interminable wait. I am glad you have found your way here....I have found so much wonderful and helpful advice and made many friends.

Sometimes just venting and sharing lightens the load.
Good to have you here.
Diandra

Kat,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Click on the following to find some fellow members to help you out.

Chronic pain:
http://neurotalk.psychcentral.com/forum10.html
SCS & Pain Pumps:
http://neurotalk.psychcentral.com/forum118.html

Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

I am 72 years old, live in Bangalore. I was "struck" suddenly overnight by GBS. I went to bed as usual, but was paralysed neck down next morning. Sounds very dramatic - but that's how it was!
I was rushed to hospital and within six hours was hooked on for a plasmapheresis session. After a total of 5 sessions in 8 days, I came home for physiotherapy and exercises. After 6 weeks of intensive therapy I was back on my feet and had gained most movements back. In the next 8 weeks I continued to progress quite well and was almost back to my "old self".

But, unfortunately this did not last long. About 7 months after the onslaught of GBS, I started slowly feeling numb in hands and feet and this has now crept upto wrist and knee respectively. In the last two weeks several investigations were done to determine possible cause - none could be found. Lumbar puncture revealed a slightly higher protein level in the Cerebrospinal Fluid. Other than this no malignancy of any kind was found in Colon, GI Tract, Spleen, Liver, Kidney, Prostate, etc.

The conclusion now is CIDP and I am now on Steroids - Prednisone 40 mg per day. I have to go for a review after 3 weeks. Hope this situation gets better and that I am taken off steroids ASAP!!

I would be grateful for feedback from other members especially those who have experienced similar trauma. Thanks a bunch

--though I am sorry about what brought you here.

Yes, what you describe definitely sounds like chronic inflammatory demyelinating polyenuropathy, which is often considered the "chronic" form of Guillain Barre syndrome. Usually, a very acute onset such as you describe portends some eventual recovery, though the recovery may be long, be patchy and incomplete, and leave residual effects. There are cases, though, in which the autoimmune attack on the nerves continues after the initial assault and the situation becomes chronic, with remissions and relapses over time (not unlike a peripheral nerve version of multiple sclerosis).

Most of the treatments, as you have experienced, involve immune modulation. The next logical thing for you would likely be intravenous immunoglobulin (IvIg), though it's often hard to get insurance coverage for that.

If you haven't already, feel free to stop in at our peripheral neuropathy forum--lots of expertise over there:

http://neurotalk.psychcentral.com/forum20.html

Welcome to Neuro Talk. You will find some great people on this site. Many including myself who have back issues. If you have to do the surgery, just know that it can and does turn out OK. You have fought the good fight to keep out of the operating room, and did everything you could do. I just wanted you to know that not all surgery is bad, and sometimes it does give you much of your life back. Keep us posted. I wish you all the best, and a future without so much pain. Ginnie

After 4 weeks Prednesone was reduced from 40 mg/day to 30 mg/day. Impulse test revealed slight response both in hands and at ankle. However, the perception of numbness in hands/feet remains the same or slightly increased. Now, after 6 weeks stiffness in knee and tightness in upper thighs as also in upper arms (below shoulder) has increased. I consulted an orthopaedician. He says this is due to steroids-induced osteoporosis. He has asked several tests to be done. Let me see what the tests reveal! Will post again

Welcome!

It is good to have a place where you can come and complain about your pain, confident that the people reading your posts are nodding their head in knowing sympathy, not rolling their eyes in boredom, like "normals" sometimes do.

You're not alone.

Welcome Kat.

Thank you for this. I know it is difficult to respond always. However, knowing that there are others with their own problems, but take time to read about others and nod in empathy is itself very comforting.

A second orthopaedician whom I consulted advised not to waste money doing tests. He says tests will reveal reduced bone density and problems due to osteoporosis. That is to be expected both due to age and due to Steroids. He says, keep up your exercises and walking. Steroids dosage will be reduced soon and "good feel factor" will return. Not to worry !! he says. Worrying or brooding increases symptoms apparently. So I am learning to put on a smile and go about my usual.