Mild case of GBS or MFS? Anyone? Please Share!
AnonymousNovember 6, 2006 at 11:24 am
I am desperately looking for someone else who has experienced a mild case of GBS or MFS. My husband has been tenatively diagnosed with GBS, although I think it may be the Miller Fisher variant.
A little history:
Tingling/numbness in hands and feet started about 4wks ago
Double vision/Bells Palsy about one week later
Weakness in legs/arms that same week.
It has not progressed past this point in two weeks. He can still walk, but only short distances and has a hard time with stairs. Double vision is driving him nuts! His job is very physical and he hasn’t worked in three weeks.
The thing that angers me the most is that when we went to the ER the day he got the double vision and Bells, the ER doc sent him home that night, saying that he only had Bells, although he admitted that the double vision and numbness/tingling was not consistant with just Bells. I asked him point blank if there was anything else we should be worried about and he said that his CT scan came back ok and it was just Bells. NEGLIGENCE comes to mind! It scares me to think that we could have gone home that night and it could have progressed into something much more! I’m sure you all have similar initial doctor blow-off stories! We finally found a great neurologist and his MRI is clean (thank you GOD!). He has had a lumbar puncture, a barrage of blood tests (no results yet), and is having EMG/NCS this Thursday.
Also, he was on Methotrixate for three months before this happened. At first, his GP thought his symptoms were due to toxicity from this drug. His neurologist doesn’t seem to think so, but it sure is a coincidence, since he was completely healthy before this. He was on the Methotrixate to treat Psoriasis, although in higher doses, it is a chemotherapy drug. His Dermotologist highly downplayed the severity of this drug! Anyone have a story about drug-induced GBS?
Also, the ER doc put him on Prednisone for the Bells, and that cleared up within the week along with his double vision. It seemed to help with the muscle weakness for a while too. When he went off of it, the double vision returned and so did the weakness, although the Bells did not return. His current neurologist put him back on Pred (short term) in the meantime because it helped him before, and although it seems to have helped a little, not as much as it did before. I am saying this because I have read that GBS does not respond to Pred. I am wondering if this is because it doesn’t help in more extreme cases, or could he have something other than GBS?
Has anyone else had a similar experience, and had it turn out to be GBS? How long was your recovery and have you had any relapses? All I ever hear about are the extreme cases, and although I am overjoyed that it has not come to that, I am looking for some mild GBS support!
AnonymousNovember 6, 2006 at 11:44 am
I may not be the most qualified person to answer your question since I have not been diagnosed with GBS, but about 17 years ago I experienced many of the symptoms your husband seems to have. While I did not have the vision problems or facian paralysis I did have many of the other symptioms including the extreme difficulty walking. I don’t want to be repetitive, but you can read my story in the “Is this GBS?” thread.
All I can say is that you are doing the right thing by going to a neurologist, and absolutely do not let him off the hook until you have a solid diagnosis. I was so happy not to have MS 17 years ago that I accepted a diagnosis of “Well its not MS so don’t worry about it”. They never even did an MRI of my spinal cord or did a spinal tap, basicly the neurologist lost interest when it was determined not to be MS. Whatever you do do not let that happen. Make them pursue it until you have a diagnosis, then once you do insist on at least one second opinion (more than one would be better) to confirm that diagnosis. Neurological / Auto-immune disorders are notoriously hard to diagnose, but don’t let your doctors be lazy. You sound like you have a good neurologist, but even so stay on him and make sure he exhausts every avenue to get a solid diagnosis. Don’t be stupid like I was, not knowing is the worst of all.
Good luck, and don’t get discouraged!
AnonymousNovember 6, 2006 at 12:56 pm
Hi Jen, welcome to the family. if it is a drug induced gbs he would have had it alittle sooner then he did, usually in 7 to 10 days or sooner after the start of the meds. my neuro thinks that might have been a contributing factor in my case, along with the infection i had from surgery. you can look up methaltrexate on the web and read if there is a reaction that involves the neurological system. if his lumbar tests come back elevated make sure he gets treated as soon as possible with either ivig or plasma exchange. it will stop the nerve damage progression. keep us updated and ask any questions you have, we’ll try to help you anyway we can. take care.
AnonymousNovember 6, 2006 at 1:54 pm
Thank you both….
I will make sure he gets the attention he deserves. This is the second neurologist among many other doctors that he has seen. She was the first one to say that she thought it was gbs, and the first to give us any hope that he will eventually get better. I sobbed in happiness when she told us that. Before her, the docs just said they didn’t know, but come back in two weeks if it wasn’t better….etc.
About the Methotrixate, I have looked it up online, and in higher doses, it can cause neuropathy, but his dosage was very low comparatively. The thing is, however, he was on it for three months straight, then he lapsed for three weeks due to not refilling the Rx and missing a doctor’s appointment, and the weekend he started it back up was when his symptoms started. I checked to make sure the pharmacy didn’t give him a larger dose tablet accidentally, or if the manufacturer changed the formula, but none of that. Maybe just a strange coincidence, but he doesn’t remember having any kind of virus, so I guess we’re grasping for a reason that this happened.
Thank you for the support. I will keep you posted on the results of the tests and his progress.
AnonymousNovember 6, 2006 at 3:11 pm
hi jen & welcome,
if it wasn’t for the metho, i’d say it is most likely gbs. so let’s say the metho caused neuropathy directly or indirectly via gbs. the 3rd possibility is non-metho related gbs. the lp can give false negatives, but after all these weeks i think not. the emg/ncv will tell the tale. if the ncv [the pads parts, not the needles] shows nerve damage, as cheryl says, he should be Rxed ivig or pp immediately no matter the root cause. prednisone is supposed to be counterproductive to gbs. however i’m not personally sure abt the mf [cranial, non-spinal] nerve damage. i self medicated w prednisone for a short time & thought it helped my mf slightly. for the record it is not actually bells although many docs will tell you it is. it’s just that mf & bells have the same symptoms. keep us posted on this thread.
AnonymousNovember 8, 2006 at 9:08 am
Jen – I was dxd with MF 3/06 – and I had the same symptoms – fortunately for me my Drs recognized it fairly quickly – my problem was I did not go to the ER fast enough – went to a Nuro ENT Dr lst and he told me I had Palsey as well and maybe the flu – so I waited about 4 days. Get to another Dr or hospital and print out some of the info in the forum to give to them – you have to be your own Dr.
AnonymousNovember 8, 2006 at 10:26 am
Hello I am one who was dx with gbs/mf in the hospital but was told that there were many questions yet and they were not sure. I had been going to the er and gp for months for the tingles and pain in my legs. I kept telling them that I felt that I was gettig worse. I finally got an er doc that put me on nuerotin because I was just a month away from getting into the nuero. that really did help with the pain.
I still though was not getting much better. i was still having vision problems and trying to work. I drove an hour each way to work in a rural town so there is not much traffic. I am one who loves to drive but for the next two weeks I had flu like symptoms. I tried to work but finally had to leave due to vomiting. next week thought that I was feeling better no vomitng so I went tback to work by friday I was standinig up and one of my employees said are you okay? you look terrible!!(GEE THANKS I THOUGHT!!) I became very dizzy and said that I was going to leave work early and take a early weekend. I drove home (not very smart) and do not remember the trip. woke up the next morning to my kids (who had softball tournament) cooking and I did my best to help them and took them to their tournament. they were expecting me to show up but I couldnt get out of bed without spinning. by that evening I got such a headache that I could not sit up. and the vomiting would not stop. husband made me got to the hospital that sunday ( too stubborn to go because everytime I went to the doctor before the looked at me like I was crazy or some drug junky wanting drugs.) he finall convinced me and when I got there they usually triage but they looked at me and put me into a bed right away.
menigitis was the diagnosis.after spinal taps and antibiotics a week and not being able to walk without help. Husband walked into my room one morning and seen my face right side was drooping and panic ran through him he thought that I had a stroke. less than 12 hours later and who face is drooping. Doctors kept telling me I wasnt getting better and that I would not get use of my face. i went off and said then send me somewhere where they can help me now!! or I am going on my own. they sent me out and was on ivig for five days and progressivly got better.. I was told they were still not sure but they were trying and i was getting better. the final dx as of january this year is CIDP. And having my usual ivig treatments. and doing much better, I dont know if you can have both, but mine was called mild case even though I was in the haspital a month.:cool:
AnonymousNovember 10, 2006 at 2:10 pm
Well, we had the nerve tests done. Shocks with paddles and needles in the muscles. Wow! What a thing! Husband said needle in the shin muscle was the most painful thing he had ever been through. He usually has a high tolerance for pain. I don’t want to scare anyone who has yet to go through it because otherwise it wasn’t bad at all… mostly just uncomfortable. The neurologist must have been close to a nerve or something.
The neuro said that his protein levels in the spinal fluid was 48…only two higher than normal, which is 46. She still thinks it is mild gbs even though this it is not as elevated as what she usually sees. Has anyone else had lower protein levels? It seems like everyone else is up in the 90’s somewhere.
Someone here said that if you are going to get this disease, Milwaukee is the best place to have it. We are lucky enough to live there, so the neuro is sending him to Froedert hospital where they have a neuromuscular department. They will evaluate him further, check for antibodies in his blood and consider IVIG.
He is slowly weaning off the prednisone.. he has about one week left. I guess we will see where we are at once he is experiencing the full symptoms. Right now the double vision is almost gone, and he is having an easier time walking, but still not great. When he went off the pred the first time, this all came back. Good news is that he is stabilizing, and it will be a slow recovery, but at least recovery is in our future. She has ruled out MS, myasthenia gravis and saciodocis and such. She also found he has terrible carpel tunnel in both wrists, which he has suspected for years because of his job. I guess that’s a seperate thing we will have to deal with.
I told my husband that everyone here says gbs stands for Get Better Slowly. This made him laugh because he is finding this to be true! Thank you all for the support. Best of luck to everyone affected by this crazy disease… caretakers included! I will let you know how it goes at Froedert.
AnonymousNovember 10, 2006 at 6:40 pm
I firstly diagnosed with ‘hyperventilating’ and then a couple of days later Bells Palsy, however about a week later that did change to GBS. With the Palsy diagnosis, I was sent home and it is there that I got to the point where I couldnt walk on my own, or eat or go to the bathroom at all because of my weak muscles. I think I read that the spinal tap was done about 2 weeks ago? is that correct? Sometimes spinals do give a false negative, especially very early on in the illness and there are members on this forum that have had protein levels in the 50’s, which certainly does not mean that they have a mild case.
This an exerp taken from an article in the summer 2004 GBS Communicator. At the bottom it talks about steroids, which is what has seemed to help your hubby.
[CENTER][CENTER][B]Evidence-Based Medicine and Treatment
For Guillain-Barré Syndrome[/B]
[I]By Robert G. Miller, M.D.
California Pacific Medical Center, San Francisco, CA [/I][/CENTER]
[LEFT]Both the American Academy of Neurology and the Cochrane Collaboration have become heavily involved in these new initiatives. The American Academy of Neurology convened a task force to review all of the scientific data about treatment for Guillain Barré Syndrome. The Chair of the task force was Prof. Richard Hughes and a distinguished panel including myself, all worked together to develop these guidelines for practitioners and patients separate but parallel effort has been underway in the global network of physicians and scientists called the Cochrane Collaboration which is an short to systematically review high quality evidence examining therapies for disease like Guillain Barré Syndrome. The publications in the Cochrane library are very focused comparing individual therapies. Those detailed reviews may be found in any medical school library or by visiting the website [url]www.thecochranelibrary.com[/url]
The following are the conclusions of the AAN guideline summary for patients and families regarding therapy for Guillain Barré Syndrome.
[B]What are the immunotherapy treatments used to treat GBS? [/B]
[B]Intravenous Immunoglobulin (IVIg)[/B]
Your doctor may suggest an intravenous medication called immunoglobulin: (IVIg). Depending on how weak you are, your doctor will treat you as soon as possible. IVIg is a medication used to help the body fight disease. Immunoglobulin is a protein in human blood that likely links itself with antibodies or other substances of directed at the nerve.
Your physician may give you a choice between plasma exchange (described below) and IVIg. If so, you should know that research shows side effects occur somewhat less often in people getting IVIg than in people treated with plasma exchange. However, both treatments are equally effective.
If you and your doctor decide that IVIg is an option for you, he or she can provide more details about what happens during the procedure and any side effects you may experience.
If you are the caregiver of a child with severe GBS, IVIg may be an option for your child. Discuss the pros and cons with your child’s neurologist.
Your doctor may recommend plasma exchange. Plasma exchange is best when done within two weeks to a month of when you first start to have GBS symptoms. Plasma exchange is a process that separates the plasma in a person’s blood from the red and white blood cells. Before the blood returns to the body, the plasma is ”exchanged” with a blood product called albumin.
Research shows that plasma exchange can shorten the time it takes to recover from GBS-related symptoms.
If you and your dolor decide that plasma exchange is an option for you, your doctor can provide more details about what happens during the procedure and any side effects from the treatment.
If you are the caregiver of a child with severe GBS, plasma exchange may be an option for your child. Discuss the pros and cons with your child’s neurologist.
Scientific studies show there is no benefit to combining plasma exchange and IVIg, either mixing the two methods in a treatment plan or performing them one after the other.
Corticosteroids are man-made drugs that are similar to a hormone called cortisone. Your body produces cortisone on its own. Although, corticosteroids reduce inflammation, careful reviews of the published studies using this drug do not support its use to treat GBS.[/LEFT]
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