What is happening to me?
AnonymousJune 7, 2007 at 11:48 am
I’m not sure if any of you remember me. I have posted a few times, but I lurk in here daily…but still question my GBS diagnosis. I’ll try to keep this short as possible.
In February (27th) I was hospitalized for vomiting/dehydration. I was unable to keep anything down for 10 days. Once I was discharged from the hospital, I was diagnosed with Campylobacter – food poisoning. That night, I noticed my legs were soo tingly & cold. I was unable to walk since being in the hospital. I thought it was from being so ill. By the time Monday (3/12) rolled around I knew something was wrong. So I was refered to a neurologist. I had an MRI – lower back (3/13) which came back normal. EMG/NCS (3/13) wasn’t normal.
Spinal Tap (3/14) came back normal. The neurologist was pretty sure I had a form of GBS. The axonal form and it only got me from hip down. I never loss sensations. So I started the IVIG Treatment Series (3/15 – 3/20). By the 5th day, I could walk! A month later I was driving. Feeling 100%!!!! I was even discharged from Physical therapy. All of April was great!
Then, on May 11th, I sat down at a funeral feeling okay. Stood up to leave and my legs were floppy again. I decided to wait it out….finally, i called my neurologist when I got to the point I couldn’t move my legs at all. (5/17) KNowing it is very rare to relapse..but he started me on another round of IVIG
The second day (5/19) I had some sort of attack. My whole body tingled and I could not control any muscles from head to toe…I felt forced to breath and light headed. We went directly to the ER. Slowly I could breath normal. By day two I could hold my head up. (The ER dr and regular dr’s there assumed it was a panic attack). I did have an SEP and an MRI- normal. When I left after 5 days (5/23)I could hardly walk and couldn’t raise my arms and I spoke with a lisp. Extremely exhausted too. The neurologist at the hospital said I had “mental” issues. This is not GBS or anything else neurological..nice huh! These force to breath heavy breathing “attacks” happened 3 more times with physical activity…not as severe…. Oh, I finished the series of IVIG in the hospital. By 5/29 I felt great again…walking, driving…just normal! My regular neurologist was thrilled when he saw me two days later, but still insisted on another EMG. UGH!
SO the week goes by, then suddenly this last monday (5/4) it came on again. Tingling in my legs, arms, mouth, slurred speech….only my symptoms seemed worse and more of them. Not only were my legs floppy, but jello-y. I just can’t hold my small frame up to walk! They also just hurt to touch! I really need to shave..ack! This time, my neurologist started me on a series of Plasma exchange. I’m on day two today and HOPE this is the trick…..I haven’t seen any change yet.
I don’t know where I’m getting at…just rambling….it’s just bizarre…any ideas?? Any one else lose their appetite completely??? IS this constant fatigue a part of it too? Sounds ridiculous, but could I have relapsed 2 times??? OR it just never left my body??? COuld it be something else?? CDIP??? myasthenia gravis?? There are so many weird neurological syndromes/diseases out there…..oh wait, that’s right…this is all psychological!!!!!
I know, I’m no dr…and Friday’s EMG will probably answer some ?’s. My neurologist says if he can’t find the answer he has a buddy at the University (Washington) who’s interested in my “case”…yeah, I feel like a case alright!
Keep me and my husband…and our 3 little gals in your thoughts…we just want a definate diagnosis!
June 7, 2007 at 12:16 pm
Becca, I feel your anguish, we too had a psych. dx the first time, cmt the second, cidp the third and now I am thinking gbs. Anyway, if you have the gbs handbook, check out p 39. If not look up Miller Fisher, here are some of the symptoms, weakness of eye movements, blurred or double vision, generalized weakness, tingling, abnormal sensationas and SLURRED SPEECH. Ask your doctor. Something about damage to a particular molecule, a ganglioside, GQ1b. Maybe there is a blood test to r/o this varient. Maybe recurring GBS which happens every four weeks? Sorry could not be better help! I will pray for you and your family. Good luck! Dawn Kevies mom
AnonymousJune 7, 2007 at 1:33 pm
You have been and still are going through some rough stuff. The only thing I know for sure is that with GBS fatigue is very, very prevalent. I don’t think you could get too much rest right now. And worry on top of all this does not help – I know that it is hard not too, but do try to take it easy on yourself (mentally). An antidepressant might help – lots of us are on them – you are not alone!
You and your family are in my prayers.
AnonymousJune 7, 2007 at 4:05 pm
There is a more rare condition that is a bridge between GBS and CIDP called SIDP, or Subacute Inflammatory Demyelinating Polyneuropathy. I only learned about it on this board, and it sounds very much like what you are describing. It’s not as persistent or slowly-building as CIDP; it has a sudden/acute onset like GBS (which you had after the camph infection), but its symptoms continue to build for a longer period of time than the short window of GBS, and SIDP patients need repeated IVIg treatments to stabilize. Essentially, if you have SIDP, the IVIg might only work for the 4-6 weeks that it stays in your system, but when it wears off your symptoms return because your body has not yet stabilized.
Here is an excerpt from an article on the subject, which I think sounds very similar to your case:
[quote]Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). [/quote]
The whole article is here:
Also, here is another thread from this forum on the topic:
If this is the case and you do actually have SIDP, then you may just not be getting sufficient IVIg because you’re being treated as a GBS patient. You may need monthly IVIg until your condition stabilizes, though how that may be determined, I’m not entirely sure. Perhaps others here could shed some light on that subject.
Regardless, I hope you get some answers soon! How scary this must be for you, and believe me, I know the frustration of being dismissed as a mental patient when your neuro symptoms are very real. Please keep us posted, and good luck to you.
AnonymousJune 7, 2007 at 10:13 pm
Thanks guys….it’s always good to hear from someone who’s going through or has been through something similar. No one at home really understands why I have NO ENERGY…especially after my plasma exchange. They are so use to me being a mom on the move all of the time. Now, just the slightest activities in my wheelchair fatigues me easily…I guess my body just needs a break.
Actually, I am on Celexa and have been on it (for depression) for a couple years now. It’s a great drug. It’s actually prescribed for panic attacks….so that makes us wonder if I was really having panic attacks..hmmmm…overall, I don’t feel depressed or stressed any more than is to be expected. Everyone is shocked at how my spirit has held up 🙂
SIDP…I’ve never heard of that one until now. It’s been almost 13 weeks since my first symptoms began. But is a good thing to bring up for tomorrow’s neurological visit.
Thanks again & you guys are always in my thoughts too!
AnonymousJune 8, 2007 at 12:32 am
I totally hear you, in 2002 after being in the hospital for 5 weeks and having my doctors tell me they highly suspected GBS along with my Lupus flaring up I was discharged with “Conversion disorder”, possible GBS, possible Lupus flare up. I never knew that till I started having insurance problems for my IVIG and went back to retrieve all my old files. My doctor at the time told me due to my EMG, and results from IVIG, along with my deterioration (tingling/numbness/to all muscles breaking down/outer limbs first/moving upwards) and then progression on recovery she was sure it was GBS. The hospital doctor labled me “Conversion disorder” when I was incoherant and non-ambulatory. Basically it means it was all in my head like a hysterical woman syndrome, look it up. I’m mad that they say one thing now but wrote another then because my insurance is trying to tell me I never had GBS or at least there is no documented proof. It was just all in my head!! I hope you get the correct diagnosis for “you” and also for any future treatments you may need. IVIG is very expensive and if you do need it long term make sure to get the correct diagnosis so it’s covered. My old doctor and my neurologist are doing alot of back paddling now wishing they wrote down a clearer diagnosis. Meanwhile, I am aching without my IVIG every month.
Good luck to you,
AnonymousJune 8, 2007 at 4:36 pm
Hello Becca I had a spinal tap and it was normal but and emg will tell if you are getting worse because they can compare the old emg test to the new one. So having an EMG while you are getting worse should give him so answers if your nerves are getting worse. Even ask them to stick the needle in your muscle to see if they are getting worse. I am not getting worse or better and never got treatment but I still have CIDP.
AnonymousJune 8, 2007 at 10:12 pm
Well, my EMG/NC was today and the dr. is just as frustrated as I am. Everything came back “normal”. He’ s going to review my results then ship me down the the University next week.
I have not seen any noticable improvement in my legs, mouth, arms since begining my PE on Tuesday.
Any ideas or advice???? Any other boards or forums you all visit you can recommend?? I did look at the Conversion Disorder. Wow! I suppose it could be possible, but it sounds more rare than GBS even! My neurologist doubts it.
AnonymousJune 9, 2007 at 11:49 am
One of my daughter’s docs brought up CD–the neuro never thought that, the rehab doc doesn’t either though. Initially ws dx as mild case of GBS and that it was resolving on its own, and she would be better in 2-3 weeks. She has not walked unaided for 4 months now. She IS gettting better, thought, slowly and incrementally, after a period of plateau. She had dreadful fatigue initially and still gets wiped out by days when we do too much. (that said, she has resumed daily life activities, such and school and chores, adapted but as normal as possible). She really wants to be ‘normal’ again, ride her bike, all that. She gets upset (naturally) but overall is positive and cheerful and tries to just have a normal life as she works to recover. I did some research on CD and frankly I think though it MAY sometimes happen, it is truly unusual. I’m no doctor, but I don’t think it fits in her case or your case.
from the Mayo clinic site:
…Episodes of conversion disorder are nearly always triggered by severe stress, an emotional conflict or an associated mental health disorder such as depression.
…Conversion disorder is rarely chronic, and most people recover within a month of experiencing first symptoms.
There’s an interesting bit I found at (conversiondisorder.co.uk/)
I think there are still many things unknown in medicine! Good luck to you, stay strong.
AnonymousJune 10, 2007 at 1:58 pm
My heart goes out to you. The thought of not knowing what is happening really gets to us. I hope you get some answers soon.
My 4 girls were young when I came down with GBS in 1993, I was not able to do things for them at all. I know how helpless that feels. But they understood and I had my Mother here to help out. I hope you have someone to help you so you can rest.
Praying for you,
AnonymousJune 11, 2007 at 10:51 pm
I was diagnosed with GBS in 9/2005 after 1 month of symtoms then 2 months later with CIDP. After almost two years I am inclined to go with SIDP. I have kept a record of my strength / numbness / symtoms / treatments for almost two years. I am good at Excel graphs. The graphs show the ups and downs with treatments, recovery, then relaps and slow steady recovery since early 2006. Note: I am more inclined to believe that the syndrome was still attacking my nerves with significants until around December of 2005. I have a web site with all the details and my ramblings.
Though my Nero disagrees; I currently feel that taking Prilosec and Antacids for heart burn for many years prior; thus reducing my digestive acids; helped a virus / bacteria attack my digestive system; thus causing my immune system to react and subsequently with nothing else to do attack my nerves. No real evidence; however, I now watch my diet, only have an early light dinner, cut back on alkeline foods (milk, yogurt, blue cheese dressing, etc) and have stopped taking anything that will reduce the acid in the digestive system. I even take an asprin to thin the blood; seems to help with the swelling of the ankles.
Feeling much better. Stronger every month. Still numb in lower legs and some in hands. I can now go numb by pressing on almost any part of the body; not just when I cross my legs.
AnonymousJune 12, 2007 at 2:00 pm
I just looked at your link. Wow!
What caught me is how close we are! I’m in Snohomish – east of Everett!
What doctor(s), if any, can you recommend???!!
I don’t have the “typical” symptoms of GBS, SIDP or CIDP. I don’t have much pain or numbness. Tingling in legs, feet (freezing), arms, hands, face, mouth, throat, ears….fatigue, unable to tell my body what to do from waist down.
My neurologist stopped treating me. Even canceled my PE’s series. All of my tests have came back normal…emg/ncv, spinal tap, etc….So, we’re waiting for an appt. at the UW with Dr. Weiss.
I was given Prilosec at the hospital just days before my symptoms started – due to the vomiting (food poisoning). I don’t think that would have triggered my problems. I haven’t taken it since.
Some of my symptoms are similar to yours…unable to stand from a squat or lift my legs /feet to put on my pants. My balance is off when I do stand. I thought your line about using a shopping cart as a walker was soo right on! I noticed this the first time around with my battle!!
I’ve never had sleep problems. My husband has sleep apnea. I would think this would’ve happened to HIM, not me!!!
Anyway…it was nice to “meet ya”!
(No change in tingling, muscle control, etc since Monday the 4th )
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