Multiple Sclerosis, better yet GBS 2

Anita,

Your symptoms sound normal for GBS. I’d try to get a prescription for Neurontin for the tingling and get some rest. Sounds like you’ve been doing more than your body can handle.

Shannon

Anita,

My doctor says to watch for the following:

Weakness that gets worse after resting or sleeping
Slurred speech
chocking
sharp pains in your lungs
feeling as though your walking in water

Never be afraid to seek medical help. If they send you home…that’s o.k.

I’ve had 106 plasma pheresis over the past four years. It’s the only thing that saved my life. They tried taking me off after a few months and I landed back in the hospital hardly able to open my eyes. Do whatever it is your body needs.

Take Care and keep writing!!!!!

Julie,

Those are great tips, but I have to wonder about the slurred speech. Ben, my fiance, still gets slurred speech when he’s fatigued, but then again, the top of his mouth is still paralyzed. I always know when he needs to rest when I can no longer understand what he’s saying.

Take care,

Shannon

I would suggest anytime your symptoms are bad and do not improve after resting one day, you should probably see a doctor or go to the hospital. residuals should let up with some rest. not saying they will go away but will return to whatever is normal for you at the time.

take care

sherry

hi anita, if you don’t feel rested after taking a nap or sleeping through the night, then i would suggest you get in to see your neuro. take a list of what you are feeling and times of day and what you ate and all meds you have taken.
did your mris show lesions? they usually appear in the brain, but are also known to have happened in the neck/spinal area. if no lesions were seen on the brain mri or the spine mri, then ask if they were seen on the cts, if no lesions no ms is present. have you been checked for als? sometimes it can manifest itself in the same way.
take care and don’t over do it. keep a positive attitude.:)

Been there done that !!!! I’ve been punctured ,probed, stuck and had every imaginable picture taken….. I’m post GBS for 23 years and 4 years ago they found spinal leisions. My nero says I have both GBS and MS and the big suprise she told me it wasn’t that uncommon. My Nero is with Ohio State University and supposed to be one of the best. She also told me it was better to treat the symptoms over the standard MS treatments because of the GBS. Its worked well for me. I take Neurontin, Flexiril and Celexa. So far so good. But I’ll be honest it took me 6 different Neros. to find one to listen to me instead of making me feel like I was nuts…LOL I know you’ve heard it before rest, rest ,rest…. and don’t give up until you find a Doc. who will listen to you…. Take care.

Dear Anita,
[QUOTE]I’m post GBS for 23 years and 4 years ago they found spinal leisions. My nero says I have both GBS and MS and the big suprise she told me it wasn’t that uncommon.[/QUOTE] GBS is a disease of the peripheral nervous system, not the central nervous system. GBS does not cause spinal cord lesions – that is a disease of the spinal cord, or a myelopathy…GBS can not cause this problem. Also, GBS is an acute disease…you would not have it 4 years. You could possibly have residual effects, but it would not be active at this time…unless you have chronic GBS known as CIDP, but CIDP does not cause spinal lesions either.

Possible causes of spinal cord lesions: Multiple Sclerosis, Transverse myelitis, epidural abscess, tumors, poliomyelitis, enteroviral infections of the anterior horn cells, Hopkins syndrome, vascular malformations, cord infarctions, cord compression, lumbosacral disk syndromes, or other trauma…but not GBS/CIDP.

Warmest regards.

Jethro

Jethro ; Had you read my post a little closer you would have noticed I said I am Post GBS for 23 yrs. and I was Diagnosed with MS 4 years ago . No where did I say that my GBS was the cause of my MS. I said that my Nero said it was not uncommon and it can happen. By the way I do know the definitions and the differences. And yes I even know what my residuals are. Thanks awfully… Any other comments ????

Dear Anita,

I deleted my post as soon as I made it because I realized I did not read your post correctly. Please accept my apology and I am sorry you saw the post for the 1-2 minutes it was there. I thought it read just the opposite, that you had MS for 23 years, and GBS the past 4 years, and the spinal lesions were caused by GBS…which can not happen.

Again, please accept my apology for reading your post wrong. I am sorry you saw the post before it was deleted.

Warmest regards.

Jethro

Thank you Jethro…

Hi Anita, I had GBS in 2001 and was paralyzed below my chest, spent time in ICU but didn’t get the respirator. I have a back injury from 1998 and when I went to see a new doc about that last year he said I should be tested for MS because of my fatique, pain, blah, blah, blah.
The MRI showed multiple lesions in my white matter, the test for ON was negative. My neurologist does not want to do a spinal tap because of the existing pain in my lower back,says it might make it worse. So I am in limbo. They are treating my symtoms and will redo the MRI in Aug.
My point is I was very surprise to hear that I have MS on top of the GBS, from your post, sounds not so rare.
This forum is fantastic, I have learned so much from this, and it is so nice to know that I am not alone.
Best of luck with your treatment.
Mary

Hi,

Let me throw in another view. Seven years ago, after the IVIG haulted progression, and basically killed the GBS disease, from that point forward, I was no longer fighting the disease. I am now fighting the damage, or residuals, left behind by the disease GBS. The disease ate my axons too, and is gone now. What’s left behind is the damaged axons. That’s what I still have left after 7 years, not GBS still active in my body in some way. So, I would say to Anita and Mary, most certainly you could have had GBS years ago, and now MS is an issue, and say that’s on top of one another, but to say you have them both going on at the same time, is a bit tricky, and pretty speculative at this point. I broke my back 30 years ago so it’s possable to say I have a broken back on top of my GBS. The NW region here is one of the top MS areas in the U.S., as far as clusters. Pretty good odds a GBSer up here might face another neurological disorder if they hang around enough time. I’m not sure what the point is, but people having multipul diseases at the same time isn’t uncommon. That might be more to what the neoro’s were really saying, only they said, or included, GBS in their statement. I say this because GBS is rare to begin with. Even the most expert in the field of GBS don’t know a heck of a lot. When I heard the word expert from my docs, I asked how many GBSers they saw in their career so far. Out of 3, one had seen two in his 32 years of practice. The other two saw only one, me. A white coat does not make an expert, in my opinion. If I were to add up the number one hospitals in this country, and the number one doctors on GBS in this country, based off this forum’s testomonials, there would be 50 number ones in each catogory. How can that be? You have to take a certain amount of what these neuro’s banter around with a grain of salt. When out of answers, something has to be said to offer hope or a way for the doc to look better. When you take an anything is possable mind set, then anything can be said. Just my opinion, but you two have GBS damage, or residuals, and now you may be fighting MS. Stack them up any way you want I guess. I hope you find answers and GBS is out of the picture. For both of you. Mary, I don’t blame the doc for holding off on the tap, with lower back pain, then that, you’d be sore and hurtin for awhile. Another thing I do with docs after my initial GBS, is for every issue I’ve had since GBS, that brought out symptons, and hieghtened my residual GBS symptons, was to say nothing verbally about ever having GBS, and treat the new thing as a stand alone issue. I let the doctor do his job completly until there are no answers, then I might bring it up. By walking in and giving a doc a disertation on GBS first, provides many an escape route in my opinion, or scape goat, that I don’t want in his mind when diagnoseing. It’s all in the questions a person asks a doctor to really see where they are coming from and what they might be able to do for a person. Ask your neuro. How many GBSers have you seen in your practice once they have left the hospital or after 2 years when their insurance runs out? When I found all over this country that ‘none’ was the standard answer, that told me there are very few, if any, experts on GBS past what they see in 2 years or less. In other words, they know nothing on the healing and recovery of GBSers after that time frame. According to them, nerve healing stops at 2 years, yet mine have healed more from year 3 threw present, then in the first three years. Three neuro’s said I’d never walk again, yet I do. There’s a tremondous amount of razzel-dazzel in the neuorlogical world, but any honest neuro will also tell you that in the big picture, very little on the nervous system is known. Again, I hope you all find the answers you are looking for.

My mom has suffered for over 4 years with this and we still cannot get anyone to tell us what she really has! Best guess is GBS. She too has been poked, prodded and whatever but is unable to get any satisfactory treatment or therapy or medication! What to do? She wants to believe she has GBS because we read that eventually it will go away but then there are the cases that last 20 years. Help! What to do???

hi kmc & welcome,

has she had an emg/ncv? what were her initial symptoms? what are they now? what kind of meds/procedures has she been given? take care. be well.

gene gbs 8-99
in numbers there is strength

racer13~
I am sorry that in reading my post I did imply that I have possible MS on top of GBS. I do realize that the GBS was seperate and the p. MS is a new bundle of problems. I have residuals from the GBS along with new symptoms from the MS. I was not clear in my post. My neurologist does not believe that my symptoms are at all from the GBS, I think.
I hate the confusion and uncertainty of these nerve diseases, on top of all the pain and daily suffering that we have it really adds to the stress!