hi & welcome,

i’m sure you’ve read this over & over, but it does work. rest, rest, & more rest. take care. be well.

gene gbs 8-99
in numbers there is strength

QR,

It seems that most seem to have problems with their feet and hands after the paralysis has gone. They are often the first to be effected and the last to heal. You said it was 4 weeks since he was diagnosed, so his recovery seems to be really doing well, specially if whatever paralysis he had seems to have gone. Remeber, the myelin sheath is attacked (it surrounds the nerves), and nerves axons can also be attacked. Bearing that in mind, whatever damage has been caused will take some time to heal.
I have heard from some people that neurontin isnt effective for them, and in fact, Eva, one of our forum members seemed to have worse pain symptoms while on it. There are some other medication possibilities he could discuss with his doctor if it doesnt seem to work for him. As I am not sure how much is a correct dose for neurontin, I think it may be a good idea to find out what doseage others use, having said that, Im sure there are posts that show what doseages help others. This should obviously only be used as a reference.

QR,

Just went into some older posts …. There are so many differing doses, I saw someone who also has 300mg 3x a day, and someone else who has 1800mg a day …. Maybe it is a good idea to go to the doctor and discuss this with him, as he should feel some relief from his pain meds. Sorry I’m not much help on the matter ..

Hi: I started on the low dose of neurontin your husband is on and it didn’t help very much. I now take 900mg 3x a day and my feet still are numb and hurt, but they are better. I would check with the doc on the dosage and see if an increase in neurontin might help. But it is not at all unusual for such symptoms to remain after paralysis is gone. Jeff

Best wishes to your fiance, Queen R. I’m a caregiver to my fiance too. I hope you’re able to find the answers you’re looking for that will help him get better!

Shannon

Hi Queen R
keep trying until you find something that works. Everyone is different. Take care and good luck

Sherry

hi qr & welcome,

many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. i took 2400 mg/day. take care. be well.

gene gbs 8-99
in numbers there is strength

[QUOTE=K123]Hello Everyone!!
Just A Few More Questions. Here Laetly When I Go To Bed I Feel Lightheaded When I Lay My Head Down. Then For The Past Two Days My Right Arm Has Been Having A Dull Ache, Sometimes Feels Like It Is Asleep, Tingling Also. Haven’t Been Doing Much Just Everyday Things Like A Load Of Laundry. Been Reading A Lot Here. I Also Have Feelings Of Anxiety, Worry About Every Little Thing Trying To Calm Myself Down With Tea. Dr. Refuse To Put Me On Anything “he Doesn’t Believe In It” Is What His Nurse Told Me. Have An Appointment With Him This Coming Thursday Maybe I Can Get Some Relief. Any Advice Will Be Greatly Appreciated. I Understand Everyone Is Different But It Does Help To Talk To Someone.
Thanks
Karla:)
Think Positive And Positive Things Will Happen[/QUOTE]

Karla – did you have GBS or MF?
Sally

Karla,

What meds are you currently taking if any???

Jerimy

hi karla & wqelcome,

get a doc who will medicate you as needed. take care. be well.

IL Barry Arnason, MD Univ of Chicago Chicago, Il 773-702-6386

treated at Alexian Brothers in Elk Grove Village during his recent stay in the CCU with GBS. His neurologist is Dr. Andrew Gordon with Northwest Neurology. They have offices in Hoffman Estates, Barrington and Arlington Heights. The number is 847-882-6604 His other neurologist is Dr. Kuhlman. He and Dr. Gordon are partners, and he’s the most wonderful doctor I’ve ever met. He can be reached at the same number as Dr. Gordon.

gene gbs 8-99
in numbers there is strength

Yup, you need a new doc! Knowing he ‘doesn’t believe in it” is a monsterous red flag 😮 There is help available. Gene has good knowledge. Keep asking questions here as this ‘family’ is willing to help all we can. Welcome 🙂

Karla,

Welcome. You’ve come to the right place.

My advice to you – get a new doctor. The one who won’t treat your pain is delaying your recovery. His refusal is ignorant.

Most doctors don’t know alot about GBS, so you may have to educate them. The good news is that there is information on this site from doctors who do know about the disease. Print out articles some of the best ones and give them to your doctor. If he/she isn’t interested, get another doc.

The residual problems from GBS are very individual. Don’t let yourself get put into a “standard” format. The problems you describe happen to lots of us here. This site is a great source for information on what to expect and what to do.

Best wishes,

Suzanne

AndyKat,

I do get tendonitous in my right wrist from time to time. I believe its just from picking up my son, or ‘overexerting’ my wrists. Unfortunately the doc’s say to [I]rest[/I] it, “and dont pick anything up”, like that is at all possible! :rolleyes:

I had tendonitis in my right wrist for 12 years before I got my GBS. For a good while, the pain wasn’t there at all. Now, I have the tendonitis back again.

Tonya

Well, not sure it is normal, but i have had GBS twice now, first time was 8 years ago, it was pretty rough,in ICU for 14 days, hospital 1 month..Second time was hospital 1 week only, much more mild, although i still couldnt walk..I have had Tendonitis in both elbows, that required surgery. They are pretty sure that it was a result of Gbs, and my work.

I have recently developed tendonitis in both hands and elbow though I hardly ever do any lifting. I notice my hands go to sleep much more frequently since partial paralysis and every morning I wake up unable to move them for a few moments. I don’t know if there is a correlation but it seems like it to me. Jeff

Both of my elbows are very sore even to touch. Have not mentioned it to the doctors but it is quite painful sometimes. I don’t know what it is called or if it is due to GBS.

Debbie

Good luck with the Doc. Let us know how it goes.

Debbie