Neuropathy? - TheBody.com's Bulletin Boards

I am experiencing a lot of frightening symptoms just now. In early August this year, I lost substantial strength in the left side of my body. I could walk with a pronounced limp, but I could not lift anything heavier than a pencil with my left arm. The weakness started as tingling and then progressed to weakness. After two days the symptoms passed and I regained strength in my left side; but, I was left with a burning sensation in my left foot that felt like I was walking on hot coals.

I asked my HIV specialist at the time, Dr. Michael Sampson of LA, what was happenning. He said I could not have neuropathy as it always occured on both sides of the body and progressed from the outside of the body to the inside and from the bottom spreading upwards.

Nonetheless, my symptoms continued and indeed worsened to the point that I had to use a cane to walk. Sampson would not prescribe anything for the pain in my left foot, but my GP gave me a prescription for amitrypline which helped with the pain. However, the weakness in my left foot continued to worsen. Sampson referred me to two neurologists in Beverly Hills, neither of whom ever returned my repeated calls. At one point the pain was so severe I begged Sampson to give me a DME order for a wheelchair; but, he said he could do nothing without a diagnosis from a neurologist.

Finally exasperated with Sampson's failure to address my growing problem, I went to another HIV specialist and at the same time made a self referral to a neuroligist/psychiatrist - Sampson thought my problem might be psychological.

The new HIV specialist, Dr. Paul Nieberg, found pronounced weakness in my left and right feet and left lower leg. Nieberg was kind enough to call the neuroligist with his exam notes such that the neurologist, a gruff ex-marine named Dr. Philip Marius Girard (no wonder he became a marine, eh?), was prepared to get to work when I came to his office for my appointment.

Dr. Girard found weakness in both feet, left lower leg and left arm. I am scheduled for an MRI and a series of nerve conductivity tests this Thursday.

Meanwhile, over the Thanksgiving weekend, I lost strength in right side for a day and had several episodes during which I could not lift my feet to walk. I also lost strength in my right arm.

Today, I cannot lift my arms above my shoulders without immense effort and I am having a lot of trouble walking. I can walk by lifting my legs from the thigh, but normal heel toe walking is very difficult.

During the exam, Girard found that I have no peripheral vision in my left eye. I feel as though I am looking at the world through my right eye alone.

My drug regimen is Norvir, Truvada, Reyetaz, Dapsone and my last labs were undetectable and 675 up from 500K and 275 in December. Nieberg thinks I may have immune recovery syndrome; Girard thinks I may have HIV related multifocal degenerative neuropathy.

Good news is that the pain has substantially stopped. I am very tired all the time and could easily sleep all day.

Has anyone of you ever had a similiar expereince? My sister has profound Charcot-Marie-Tooth syndrome and is confined to a wheelchair. I dread coming down with CMT.

Happy holidays,

ScotCharles

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