burning sensation on skin around eye area

hi bunny, welcome back. it is normal for me to have those hot spots, i’m not sure if its from gbs or not but it has only happened since my gbs started. from all the cases of shingles that i have been around it doesn’t sound like it to me, usually shingles is only on one side of the abdomen/rib cage area around to the backside. my father in law had shingles really bad a few years ago and it stayed on the rib cage area front and back only on the leftside. when my muscles act up around my eyes it is on one side at a time and doesn’t last for more then a few days. i just go with the flow and stay on my neurontin and wait it out. with gbs you never know what is normal or not until you end up in the hospital is my view, no use worrying about what is the cause if there is no test, treatment or cure for it. make sure you get plenty of rest it is still very important. take care.

hi bunny,

as cheryl says, neurontin for pain. how much RU taking? where do you live? i may be able to suggest a neuro near you. your symptoms keep getting worse? i wonder if you need more rest or if you might have cidp [chronic gbs]? has your neuro done any emg/ncvs to help rule on it? take care. be well.

gene gbs 8-99
in numbers there is strength

Well I guess I finally found someone who might believe me, however it usually affects my entire face. Burns like the dickens…sometimes for hours, but I do notice it’s whenI ‘m more physically or mentally stresed. I’ve been controlling my pain a little better with the cymbalta and Klonopin but I can’t say my stamins is very good. The battery burns out around 2 pm in the afternooon and it’s a struggle from there on out. Normalcy…..now what could that be like? It’s been almost 6 years for me but I’m still wishing on that majic star. Good luck with everything, and know matter what weird thing might pop up, I’m quite sure it’s in behalf of our old friend GBS. xoxoxoxo Roxie

Bunny,

I have taken a portion of article “[FONT=Arial][B]Disability After “Recovery” From GBS” [/B][/FONT]
[FONT=Arial][URL=”http://www.angelfire.com/home/gbs/aftergbs.html”]http://www.angelfire.com/home/gbs/aftergbs.html[/URL] cut and paste.[/FONT]
and I have highlighted a section that has to do with ‘age’. we all know that our bodies grow weaker as we age, and therefore, (this is my own opinion) whatever has been damaged by the GBS, rears its ugly head for some of us. I too have been diagnosed with shingles, which comes around if I am under stress, and that was diagnosed about 5 or 6 years after my initial onset ….. and my doc said then that they thought it had, in a round about way, to do with GBS.

[quote]
However, many decades after GBS, recovered muscles once weakened by the disease may again grow weak
. This is a slow process that occurs over years, and may at first escape the patient’s notice. It is likely that this delayed weakness [B]is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS.[/B] The same phenomenon has been observed after poliomyelitis (“post-polio syndrome”) and other forms of acute nerve injury.
[/quote]

bunny,

CA UCLA: Dr. Michael Graves is highly regarded and is a member of the advisory board of the GBSFI. I found him to be caring and knowledgable.

Los Angles area doc with gbs experience is Dr Emilio Cruz. He was really good… his # (818) 842-8177

physical threpist Joyce Campbell, Ph.D., P.T. she is a proferssor in the Dept. of physical therapy Cal. State University, Long Beach . She runs 2 floors of GBS patients.

Santa Cruz – Dr. Michael Gansauer Santa Cruz Medical Clinic 831-476-8900

Huntington Beach – Dr. George Perrine 19066 Magnolia Street, Huntington Beach, California (CA) take care. be well.

gene gbs 8-99
in numbers there is strength

[QUOTE=bunnyrarebit]Hi, Happy Holidays to everyone. I haven’t been on this site in awhile. Hate to sound like a whiner, but I had the full course of GBS in 2001. As the years have gone by, my recurrent symptoms get worse. Lots of nerves running up and down legs and burning hot spots normally on legs, i’m experiencing less and less energy and am becoming more depressed. Most of my symtoms have been in the lower part of my body mostly in legs and ankles, feet. Can’t stand up very long because of pain in ankles. No satisfaction from drs. Anyway for about the last month I have had a burning (hot spot) sensation surrounding my left eye area, high up on the cheekbone. It seems to come and go, but lately with alot of emotional stress, etc it has become worse. I went in for eye exam 2 weeks and mentioned to eye doctor. He says he sees nothing – there is no rash and my vision is not impaired. He suggested that I might be starting to have shingles. I told him that I think it is GBS related, because I have the same sensations in my legs. He said shingles usually starts on left side and could result in scabs going into my eye. he suggested I see my neurologist. Good luck on that tried getting in and it takes about 6 months with all records from attending physician from 6 years ago. I think, my gut feeling, its purely GBS and just want to know if any other victims out there have experienced. By the way, I was talking to RN friend and she has treated many GBS victims and I think she had the most accurate description of it _ she said “it’s rape” a total assault of you whole nervous system. I certainly agreed with that description. Please reply someone.[/QUOTE]

From my understanding that shingles are all part of the immune system – I had Miller Fisher 3/06 and had fever sores, shingles – which I was told is all part of GBS varient – I was given ‘Valtrex’ which did wonders – still have symptoms like you and start the Valrex and it works. Hopefully – this helps.
Sally – email [email]sasmaw@tampabay.rr.com[/email]

Hi Bunny,

My fiance Ben takes Quinine for uncontrollable shaking and muscle spasms. It’s a prescription drug–325 mgs.–but you can also get Quinine in Canada Dry Tonic Water.

Shannon