Gbs And Ms?

Hi Shan, I’ve been thinking of You 2. Sorry to hear Ben is having more problems. You know anything is possible. Since ms attacks the cns and gbs attacks the pns the only way to tell them apart would be testing the cf with a lp looking for olig(?) cells. They are present with ms and not with gbs. Along with the possibility of lessions. Keep us updated Hun! Give Ben a Huge Hug for me also. Take Care.

Hi Shannon,
As Cheryl mentioned, the lp is specific for ms. Just a side note, lessions do show up on people even if they do not have ms. Recurrent headaches are sometimes indicated with lessions on the mri. What makes you think ms and not cidp or just really bad gbs residuals?

Regarding gbs and ms, they both are autoimmune, and once you have one autoimmune you are more pre-disposed to other autoimmune issues, lupus, ms, diabetes, etc.
Keep in touch!
Dawn

I know that in the past there have been many with GBS or CIDP who have had lesions show up on a CT Scan. Didn’t mean they had MS, however. I think it would be more likely that he has CIDP rather than MS. What symptoms are these that are making you think MS?

It is unlikely that someone would have both diseases, but two things can happen.
1. That someone is thought to have one illness (like CIDP), but really it is an early presentation of MS. I have read of this happening several times and most of my family says this is the case for my cousin. Sometimes you do not know something is MS untill a second episode of strange problems or until there are clearly central nervous system changes.
2. there is a lot of overlap in these diseases–since both are demylinating, diffuse, fluctuating, mystifying….. As lots of people on this website state, often people with GBS/CIDP have things that classically are thought of as CNS (central nervous system) not peripheral nervous system. For example, the fussy brain, vision changes, fatigue, trouble with internal organ function, etc. My neurologist keeps thinking I might have MS or a spinal cord problem because he is not convinced that the atypical features that I have (especially the fatigue and vision changes) are from GBS/CIDP. Fortunately, lots of people on this site write about these as part of GBS/CIDP so it is clear that they can occur with these diseases and do not have to be from MS or a central demyelinating process.
WithHope for cure of these diseases

Shannon-
My father was dx with GBS in 1993 and was treated with IVIG with good results. He had lingering weakness in lower extremities but got along well for several years. However he began to have increased difficulty walking along with other neurological changes. Long story short, we did not get a thorough answer from his original neurologist who just downplayed his problems as being residual. We decided to change neurologists in 2005 and were referred to one that was highly recommended by his family doc. This was the best thing we could have done. This doctor is FANTASTIC and really listened to my Dad. He admitted him to Duke right away where he ran a thorough battery of tests to pinpoint what was going on. As it turns out, he has normal pressure hydrocephaly, as well as, MS. He also went back through all of his original records to make sure the original dx of GBS was correct and confirmed that it was. So to answer your question… yes it is possible.

One side note- my 18yo son was dx 01-14-08 with GBS and has had a very aggressive case from which he is now recovering (just got out of Rehab facility on 05-02-08) and his neurologist is the same as my Dad’s.

I think the key to get an answer to your concerns lies in your neurologist. If you are not sure the doc is really listening to your questions and concerns, find someone who will.

There are definitely many overlaps between the symptoms of GBS and MS. I am someone who has been on quite a roller coaster because of these many similarities.

I got GBS in early 2007, but my dx was very difficult because I have white matter lesions on my brain which showed up on the MRI. This made them assume it was MS, so they gave me IV steroids and sent me home where I continued to get worse and almost stopped breathing.

I changed neurologists, and the new neuro looked at my MRI along with my symptoms and told me that what I was experiencing looked nothing like MS, dx me with GBS, and put me in the hospital immediately.

IVIG stopped the progression of GBS and I spent the coming weeks and months in inpatient and outpatient rehab. Today I’m really doing well with the “new me,” though I do still have many physical challenges to manage on a daily basis. My current neuro is certain that what I had last year was GBS based on symptoms, test results, response to treatment, and the progression of my recovery.

However, the specter of those white matter lesions in my brain continue to haunt me. Every time I have anything neurological happen now, I have to go through a whole new battery of tests to determine whether or not it’s just a GBS residual or whether it could be MS rearing its ugly head. I have been told twice in the past year that I have MS, only to have it taken back again. It’s emotionally and physically exhausting. But my CSF protein count is normal now, I have no oligoclonal bands in my CSF, and my EMG is normal. So as far as I’m concerned, that rules out both MS and CIDP and fully establishes that there is no active process going on right now.

I know someday that may change if new symptoms arise, and I feel like MS will always be lurking in the shadows for me. But at the same time, many people do have white matter changes without ever developing MS, so I’m just hopeful that I’m one of those people. When I was in the hospital last November going through a whole new round of tests because of this mess, I had many doctors tell me how rare it would be for someone to have both GBS and MS. But clearly it can happen, as Kimbo shared in her post. Rare is not the same as impossible.

I, too, would be very interested in hearing what symptoms make you suspect Ben has MS now, too. I have had a lot of experience with this in the past year-plus, so I’d be quite curious.

Hi there, I am 25 years post GBS this month and have recently gone through testing for MS as I have begun getting residuals. I have one of the leading neuro’s in SK who has done huge studies on MS primarily, and GBS. The first thing he told me was that if I were to have an MRI, it would not tell him anything because I have had migraines in the past. People with migraines also show white lesions on their MRI so he would not use that tool for diagnostic purposes. He gave me some reading to do and reassured me that I should not worry if I showed the lesions and they were often inconclusive in cases like mine. This may be what you are experiencing.

Take care.

I [I]am [/I]prone to migraines. If that were the explanation for the white matter changes in my brain, then I would be quite pleased.

If you do a search for “MRI’s and Migraines” you should find reading around the white lesions. I will try to find the website my neuro had me read and will get back to you.

Karma Kat, The info the dr. gave me to read is on my home computer and I am away this week so using my work computer. I did find some info similar to what he had told me to read so have added it to this post. Hope it helps you to relax about the white spots. Not sure how old you are, but this says it is also part of aging! I’m 54 so that makes me feel better.:D

“Many times I get consulted by patients or their relatives when their MRI brain report reads multiple scattered white matter lesions seen. The radiologist’s report usually further reads that these can be seen in primary demyelinating conditions like multiple sclerosis or in vascular disorders. Patient’s and caregivers are naturally worried when they get this MRI report and do not know what to do and how to proceed further. So I thought that here I shall talk about these white matter abnormalities seen on the MRI. What is their significance? Do they represent evidence of multiple sclerosis?

White matter signal changes on the MRI essentially means that on the MRI, the white matter showed some scattered bright spots. White matter in the brain refers to the fiber tracts that carry information to and fro from the brain.

My first question when somebody asks me what next and what does this mean is to ask them why was the MRI done in the first place. If the MRI was done because there was a clinical suspicion of multiple sclerosis then these white matter lesions may indeed have significance and may represent radiological evidence of MS plaques. Let me explain this with an example. You go to your doctor, you have signs and symptoms that suggest MS (example you may have had an attack of optic neuritis), when the doctor examines you he is able to elict signs in the examination compatible with a diagnosis of MS, then he orders an MRI to see if you do have evidence of white matter lesions in the brain. In a case like this the presence of white matter lesions/ signal changes in the MRI is obviously important. Here it likely does suggest the presence of MS. That said and done I again want to re-emphasize that the diagnosis of MS is made on the basis of clinical history of previous attacks, CSF (spinal fluid) examination and MRI, not just on the basis of the MRI alone. Also there are certain criteria which have to be satisfied on MRI to make a definite diagnosis of MS. These radiological criteria for MS include the number of lesions on the MRI, their location and their size.

Thus it is important to remember that a person who is noted to have white matter lesions on a brain MRI does not necessarily have MS. White matter lesions can be seen in numerous other conditions and they are more commonly seen as we grow older. The thinking behind this is that they represent microvascular ischemic changes in the brain (the smaller caliber blood vessels in the brain showing signs of ischemia or decreased blood flow). Hence these white matter abnormalities on MRI are more commonly seen in patients who have microvascular and macrovascular risk factors such as a history of hypertension, diabetes and high cholesterol (dyslipidemia/ bad lipid profile).

White matter signal changes on MRI may also be seen in patients who have infectious and other inflammatory conditions. They have been reported in the MRI of patients with a history of migraine headaches (migraine too is a vascular disorder and that may explain the connection).

So I want to end by saying that the presence of these white matter signal changes on brain MRI has to be correlated to the history, clinical examination and other ancillary investigations. Your doctor shall help you in going about this in a methodical manner. I repeat these white matter lesions do not suggest MS in each and every case they are found.

Dr. Sethi

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Shannon,
Hi, I haven’t met you but I have read a lot of your post and seen how you have been there through Bens progress and problems.
I think it is wonderful the way you are there for Ben. You are a great caregiver to him.
Take care of you also.
Shirley

Shirley,

She is all of that, those of us that know her are in awe of her support and compassion for Ben and everyone. Shan is a good person as I like to say 🙂

Jerimy

On a different note, when are you two going to get married, LOL? Have been reading your posts since the beginning, can’t imagine what is going on, doesn’t sound at alike CIDP thankfully…

Jerimy,
I can feel that (awe) that everyone has for Shannon in all the post I have read.
I see the respect everyone has for you in those post, including myself.
Great people in this foundation!
Shirley

[B]Love Ya Shan:) 🙂 🙂 [/B]

Shan, I’m sooo sorry for Your Loss. Big Hugs Hun!!!

Hi Shannon,
Sorry to hear about your mom.
Dawn