Guillain Barre Symptoms, but no diagnosis

[mlg007]

Looking for some help with my wife's health problems.  She is in her mid 30s and is extremely fit.  About 2 weeks ago she began experiencing tingling and numbness in her legs, that has now moved to her arms and lower torso.  Within the last day she has the same tingling and numbness in her face.  She has a general lack of strength and stamina that is extremely abnormal for her.  

Her contract MRI, spinal tap, and EMG were all normal (no abnormalities).  They are doing a Lupus test, but the neurologist does not expect this to be Lupus.  We live in the lower Midwest and do not see much Lyme disease, nor have we seen any tick bites, etc.

Does anybody have any other suggestions.  The neurologist at our local, decent-sized hospital appears ready to give up.  

[vinsinn]

Guillain-Barre with a normal spinal tap?."

[catnip009]

I just discovered your question in doing a search and my reply is that there was a pain and weakness curve and it gradually got better over several weeks.  I think it was worse when I moved around too much, but lying in bed was painful, too.  Guillain Barre attacks the peripheral nervous system and there are six varieties.  Bell's Palsy is an immune reaction, too, involving the nerves.  I use "tapping" described below to help myself.   I try my best to avoid latex and rubber.  Try to avoid mold and have an air filter running in my home and a air furnace filter rated no. 13 that helps a lot, and a dehumidifer and air conditioning help in the summer.  There is a technique I discovered called EFT that you might want to look into.  It's a tapping and positive self-talk that seems to affect the body and immune system.  Check out, copy and paste links into address bar.   www.eftuniverse.com  Here is a sample:  http://www.eftuniverse.com/index.php?option=com_content&view=article&id=2997:facial-paralysis-clears-in-one-eft-session&catid=70:serious-illnesses&Itemid=2603   GREAT DEMO of tapping technique to self-healing!  http://www.youtube.com/watch?v=0sLaPUppAxo   Do a search on youtube.com for "eft" and "tapping".  Do a search for color therapy.  Here is a good site:  http://www.dinshahhealth.org/  Another:  http://www.youtube.com/watch?v=3mkUKevtmp0  Good source for color filters:  http://www.productsondemand.biz/colorfilters/index.cfm   I am a great believer in self healing.  A phrase I repeat to myself every day:  "Every moment is a miracle and a gift from God."  Wishing you peace and good health.

[lula78]

HI!  I am curious if your pain and aches came and went or if they stayed constant with GBS?  Same thing with the tingling?  My doctors are saying they just think it is in my head, but have only done blood work on me.  I feel like something is wrong and the doctors are just feeding me pain killers with no explanation for my strange onset of symptoms of pains that moves throughout my body and doesn't stay contact and same thing with thingling sensations.  

[catnip009]

It does sound like Guillain-Barre, a powerful immune response that affects the nerves.  Here is a doctor's video on YouTube:  http://www.youtube.com/watch?v=h641luMEu8Y&feature=related
I'm curious if there was a vaccination or dental work with injections? Or an injury several weeks before? Or reaction to something like metal?   The stopper and other components usually are made of latex/rubber and some leaches into the liquid and is transported by the needle passing through it.  I have suffered from mild Guillain-Barre a few times related to latex/rubber and a rash leaving painful pigmented scars.  It's so frightening and recovery takes weeks to months.  My face and eye were paralyzed one time after dental work, but the paralysis stayed confined to the face.  When I had a tooth extracted, there were several large injections and the oral surgeon "accidentally" wore latex gloves and that side of my face and mouth were paralyzed for a week and took months to be able to smile again and speak easily.  Scars that burn all the time were left in my lips from the swelling and rash where his glove made contact.   Another time it was my tongue and a painful ulcer was left because latex was accidentally put in my  mouth.  Symptoms were flu like and a weakness and myalgia throughout my body and pain and weakness going up from my feet to my pelvis and hips.  Arms and shoulders became weak and ached, as well my spine and neck with headaches.  I would check on alternative remedies, because many  people with an immune system on the war path have bad reactions to drugs.  I would suggest B-12 that melts under the tongue so it is absorbed rather than being destroyed by the stomach acid and eating eggs because there is something in egg yolks (B vitamins and other nutrients) cooked so they're still liquid (not hard boiled) that is very healing to the nervous system.  Advil is also something that has helped me by reducing inflammation and making my immune system temporarily take a time out, but don't take around the clock. Anti-inflammatory herbs like ginger and cumin and turmeric by itself or by eating mustard help.  Fish oil is anti-inflammatory.  It's a positive self-talk and tapping technique that has helped people reduce stress and speed healing.  And always there is prayer, because God hears us when when we talk to him.

[ahoskrn]

Hi. I am doing better. I am back to work and returning to life, but still have symptoms. I am now on Lyrica 50mg three times a day and Cymbalta 60mg once a day. The Lyrica did make me goofy in the beginning but after about 3-4 weeks I didn't even feel sleepy. The Cymbalta has helped tremendously. The two together, I think, is a winning combination. I still have some slight tingling, a tremor in my hands that comes and goes, a tremor in my jaw-tounge that comes and goes and still feel weird when I walk barefoot (sensory messege is off some how, they feel heavy, tight and weird.) But when I have shoes or socks on, I walk normally now. All my MRI's were negative, my spinal tap negative, my Nerve conduction study, negative and EMG negative. You can "see" the hand tremor occasionally, and my husband has felt the twitching in my thigh. Other than that, everything I feel cannnot be seen or documented which is very hard to deal with. I do have a good neuro who is extremely supportive and committed to helping me feel better. He has no idea what I have, he thinks "viral". He does not belive MS since everything presented with and Acute onset (within days) and bilateral and all over body and since all other test negative. If I look back to where I was in March, I am at least 100 percent better than I was, but still not back to the baseline. I have not gotten worse, but I do think what is left will take a long time to improve, if ever. But it is bareable now. Try the Lyrica. If it helps a little, try asking your doc to up the dose to at least 50mg three times a day or 75 mg two times a day. I did better with the three times a day. Check out the Lyrica web site and look under the section for professionals ( I am an RN) and you can see the chart that shows the dosage and percent of improvement of complaints and you'll see you might really need to be on a higher dosage to feel the full benifit. But do give it time, I was REALLY sleepy and "high" and like I had ADD in the beginning. There is some evidence of Guillian Barre (sp?) linked to flu vaccine, so you might have experienced a viral onset from the vaccine!!!!
I still read this board several times a week so if you want to talk more, just ask!
Sincerely,
Angela

[cckup]

I also have these symptoms and they drive me nuts!  Along with the total body tingling and buzzing is hypersensitivity to touch, temperature, wind, clothing when I first put it on/of, but at times I can't feel anything.  The tingling in the tip of my nose has progressed to around my lips and nose as well as like I am wearing a mask across my eye.  My vision gets blurry to a point where I can hardly see then a few minutes/hours/days later it is fine.  My eyes also feel heavy and like there is fluid around them, but you can't see anything.  I have intermitten bouts of swallowing difficutly, muscle weakness and extreme fatigue.  My arms and legs often feel like heavy dead things.  I have difficulty writting, buttoning.... Decreased concentration at times.  I am 45, was relatively healthy and active, am a physical therapist.  My symptoms were also of SUDDEN onset and occured 3-4 days after I had my annual flu shot Oct. 2006.  Been thru the ringer as far as tests go with everything coming out normal--blood work, EMGs, MRI.....  They started me on 10mg anatrypiline (sp?) and it helped alot!!!  But made me soooooo sleepy.  Then changed me to 50 mg lyrcia 2x/day--but made me very euphoric and only took it for a week.  They changed me to cymbalta 30mg and that did the trick for awhile--knocking the annoying symptoms down from an 8 or 9 to a 4.  But about a month ago I had another "attack" and my symptoms worsened.  So they upped my cymbalta to 60mg.  And yesterday on a recheck they added the lyrcia back at 25mg 2x/day.  I have not started the lyrcia yet--waiting for the weekend incase it makes me goofy like last time.  I am just very frustrated because no one knows what this is, what caused it or how to "fix" it.  Both neurologists that I have seen act like I am crazy.  I am sorry you are also suffering from this, but was a bit of a releif to find that there are "others" out there with the same or simular thing.  Has not been a posting in a few months---any changes with any of you?????  What should my next step be--I am truly going insane with this abnormal senation and fatigue!?!?

[ahoskrn]

Yes, I couldn't believe I got my question posted. Posted real early in the morning (like 7am) and it worked. I have since changed neurologists and got a second opinion. The second neurologist is doing a lot of what the internet doctor suggested. MMA and Homosistine levels to check for B-12 def. also I go back next week for a nerve conduction study. He (the new neurologist)isnt keen on believing it is a "viral" myelitis although he can't completely say that it is not. He thinks I would have had high protien in my LP or something show up on the MRI's. He thinks it is "metabolic" because of rapid onset. He changed my Lyrica to 50mg 3x a day because I had a severe anxiety reaction to taking the middle dose away ( I was originally taking 75mg 3x a day) and I did some investigating...Lyrica is perscribed in the UK for generalized anxiety disorder as well, so be careful when weaning. 50mg 3x a day does not make me as sleepy. I am still having the sensations but there are some periods of the day when I don't notice them or they are really slight. Other times my feet buzz or I have a "hot splash" on the thigh or down the arm or my fingers tingle. I am also taking 2000mcg B-12 a day, that is seeming to help my mood...maybe placebo. I fired the other doctor because he seemed ok with sitting on no evidence yet making a diagnosis. I am an RN at a busy hospital and given my medical background, I know when to keep going to find a cause. Back to your question: If you can "push" your finger into your skin and it leaves a "hole" that is pitting edema. It may or may not have anything to do with your other symptoms. Lyrica can cause you to retain fluid, so if you are having problems with edema, make sure it is okay to take. It does help, but it doesn't make mine go away completely. Did you try the lyrica yet or are you waiting until after your appt? Let me know!

[laaz]

hi. i see you posted your question to one of the doctors .dated 3/1/07. you were lucky to your question posted but you really didn't get much of an answer did you.  Are your symptoms coming back worse even being on lyrcia? Are they still toned down as you told me before at a level of a 2-3?  Have you had any new recent tests or medications since you last wrote me?  I'm going to Mayo march 26 in rochester minnesota. I still have all my same symptoms, they are driving me insane. remember when i mentioned to you it also feels as if i have fluid under skin tissues, well, besides all these strange water, buzzing, running sensations, I wonder if it could be nonpitting edema also?  Has any of your symptoms changed at all, for the better or for the worse or are they still the same?  Has your doctor come up with anything else he thinks it might be or thinking of any new medication for you?  I hope your symptoms are still down to a level of a 2-3. from a 1-10 mine are at 100!!!!! 4yrs. one month of pure hell.  Please write and tell me how you are doing.        Laaz

[ahoskrn]

Take a breath. I know you are stressed out, I can sense it in your coments. If you have had this for 4 years, and you are not any worse (you are walking, talking, functioning) then that is a good thing. The sensory issues can be helped by the medication. Try the lyrica, you can wean yourself off it before your Mayo visit. It was a HUGE relief to me to get a break from the sensations. My lumbar puncture came back "clean" with no WBC and no Oglioclonal banding, no elevated protein, this coupled with a clean MRI of brain and spine says no MS...my neuro says "viral myelitis".  He said symptoms could take months to heal, so if you have been having these symptoms for years you may have sustained some nerve damage...but medications can help that. I don't have edema. Your edema could be caused by something else metabolically and could have nothing to do with your neuro symptoms. I am sure the people at Mayo will do a full evaluation from head to toe and give you a better picture of what is going on. You have been very brave and patient to sustain 4 years of symptoms. Try the Lyrica, see if you get some relief!!!!! It will do your mind and your spirit good. Please let me know how your are doing! When is your appointment with Mayo?

[laaz]

sorry comment is so long. My eyes are always tearing and the drainage is thick. One doctor thought i had a parasympathetic overdrive of my secreting glands. one ent doctor said that you could get swelling on face, neck and upper chest from autonomic-parasympathetic nervous system? I just was wondering if you remember how long your doctor said that you would have to be on lyrcia? I told one of the home neurologists about you and the lyrcia and she gave it to  me to try today.  But I am going to mayo at the end of march and i have to be off medictions for 48 hours, so I don't know if it is a good time to start the lyrcia. I was even on robinul, a drug they use to dry up secretions, they were going to start me on it at mayo a few months ago, but my doctor at home gave it to me and it did not help the running. I know my face looks different, the people that know me even say so.  I am so desperate, depressed and I feel like i don't even want to go on anymore with this body of mine. The not knowing what is wrong, feeling hopeless, thinking is it an edema of sort, nerve endings, neuropathy, but a neuropathy wouldn't cause swelling that goes up and down in facial tissues. I even tried lasix to eliminate the excess body fluid, that did't help either. please write back with any info. that i asked you please.  Again, sorry so long. But over 4 yrs. of this is and not knowing is driving me crazy, and I know I'm not.  Just desperate. Thanks for listening. Family just don't understand and they tell me to stop thinking about it. Can't stop thinking about something that is non-stop 24/7. I wish they could have this for about 6 months or so, and see if they could stop thinking about it, try over 4 yrs. of this . I was so healthy until this.

[laaz]

HI. I had a few questions i wanted to ask you about your problem. Well, first of all i did have 2 spinal taps in the past 4 years. The first one came back after being sick one and a half years, WBC were at 9 , the doctor said they don't treat anything unless it was 10 or higher. But i often wonder why after almost 2 yrs. at that time of being sick that my wbc were still elevated. doctor said they like it to be 5 or less. Second spinal tap 3 yrs. after being sick wbc at 5. My 6 brain lesions,  all the neurologist, ms specialist said it is not ms. With your problem did it bother you when clothes touched yours skin? Did you have any skin tissue changes, I mean visually? Where i feel the water, secretions running on my face, it appears swollen, espesially under eyes,cheek and neck area.  I can't stand clothes touching my skin, it almost feels like there is a slight edema of my skin tissues, espesially arms, legs, face, feet.  My skin on the soles of my feet have turned  shiny and the skin is dry and peeling off. Never had shiny skin.  My palms of my hands are kind of like that too, but not as bad as my feet. I also have 24/7 post nasal drainage, and i mean 24/7, When I first got sick after the explosive diarrhea, i had this jab like feeling way up high behind my nose on the right side and that is when this started.

[ahoskrn]

I noticed a difference within 3 days( the Lyrica brochure says most people notice within 1 week). You are VERY sleepy the first few days and I didn't know how I would function but your body adjusts and I just get mildly( like I need a nap) sleepy in the afternoon. I have been on it for almost 2 weeks and the increased dosage made a world of difference. (3 times a day, I take it at 7,2,10.) Go to www.lyrica.com for info and click on "Information for healthcare providers" to get study results etc. Annoying side effects...edema. I had about a 4-5 pound weight gain (face a little puffy, tummy, thighs) the first week but so far thats it. Small price to pay for sanity. I still feel mild on again/off again tingling and "weird" sesory feelings but only a few a day and not constant.Did you have a lumbar puncture to rule out MS? I am awaiting my results but my MRI's were neg. If you had some lesions, that doesn't mean you have ms, but you had some kind of demylinating event (viral,or something else?). I would have a LP if you can, just to rule it out. It wasn't fun,hurt more than I thought, but I just want to be sure. Hope this info helps!

[laaz]

hi - my gastrointestional virus was violent too- explosive and I mean explosive- no symptoms prior to it though. Just the hell afterwards. I'm not an RN but I am an LPN and was healthy until then too. Did your doctor say how long you would have to stay on Lyrcia? Years, the rest of your life?  My feelings are usually cold except on my middle back by my spinal area.  How long did you take lyrcia until you noticed a difference at all?  just wondering because i am just looking for some answers or tips of any kind. Thanks for getting back to me so soon. Please let me know of anything that might be of help or any info. that your doctor might have said about this.  Thanks again so much. hope to hear from you soon.

[ahoskrn]

The LYRICA helps tremendously. I started out taking 75mg two times a day the first week, it was helping "turn down" the vibrations (yes I have buzzing, legs and arms and torso)on a 1-10 scale down to a 2 or 3 then the doctor increased it to 75mg 3 times a day and that did the trick. There are MANY hours of the day that I don't feel anything (a god send after 6 weeks of complete hell) and I take .5mg xanax at night with my nighttime dose of LYRICA and I am out for the night. I had a few fasiculations, mostly in my legs. I notice my eyes are"jittery" occasionally. All I can say is the gastrointestinal virus was unlike anything I had ever had before. It was violent, and I was drenched in sweat within seconds and had night sweats for 3 weeks. Ask your doctor about Neurontin or Lyrica, they are both perscribed for neruopathy. The doctor said nerves heal in months and sometimes years. I can't imagine having these symptoms for 4 years. You need to be on something to help you cope. I also heard Elavil (anti-deprs) also works on peripheral neruopathy. I think the weirdest feeling I had was "hot boiling water" pouring down my right thigh at any given moment for no reason. Trying to descirbe to people (and doctors) how crazy these symptoms are make you feel crazy.  I am an RN and have never been "sick" before, I now know how frustrating it is to be the patient with no answers. I hope you find your answers at Mayo. I have heard a lot of good things about the doctors there!

[chrisbobby]

so it never progressed to muscle weakness? i had these zaps and also wicked gastro issues last week but that is also said to be a sign of gbs

[laaz]

I too had a gastrointestional virus, was in a third world country when it happened. I started with tingling, pricking sensations all over my body, then when that stopped I had sensations of water or fluid -whatever- running down face, scalp etc. as time went on it spread over my entire body. I get feelings of cold running down my legs, arms, face, hands, fasciculations, some I can actually see . My right foot has a vibrating, buzzing feeling to it also. Do you have any fasciculations, buzzing or vibrating feelings? Had spinal taps, mri-6 to be exact- they found 6 leasions but ms specialist says it is not ms. This has been 4 yrs. for me as of feb. 14. It is driving me insane.  Sometimes I get a warm sensation in the middle of my spine area.  One neurologist called it viral syndrome, one doctor thought I was nuts, another neuro. thought it had something to do with my autonomic nervous system, like a parasympathetic nervous system overdrive of secreting glands.  I still don't have an answer but I do know it has spread first face, scalp now over all my body. I am going to Mayo Clinic in March again - I hope they can help as I see some people on this forum have some of the same symptoms.  One day I hope we can find out what happened to us.  I was completely healthy until I had that gastrointestional virus.  Does the Lyric help with your sensations?  If it does, is it alot or a little.?Did your doctor say how long it takes for the nerves from a virus to get better?  Is there anything else that you take besides Lyrica?  I have to take a pill to sleep at night because whatever this is never stops-- 24/7

[ahoskrn]

I have had similar symptoms with an acute onset 6 weeks ago. Mine started in my fingers and hands and progressed to legs and toes. Also tingling in lips, tounge, face and weird sensory feelings of hot/cold. Brain MRI, Spine MRI negative awaiting CSF lumbar puncture results which my neurologist suspects will be negative. He keeps saying "viral" that there are alot of viruses that can manafest in your spinal tract and cause neurological symptoms. Because it was such an acute onset (healthy no problems before) I am inclined to believe him. I did have a gastrointestinal "virus" 2 days after the tingling started. Did your wife have a cold, flu, or stomach virus recently? My neurologist perscribed LYRICA 75mg 3 times a day, and although it is making me really sleeping, most of the annoying symptoms are very slight. He said damaged nerves take a long time to heal. I hope this helped you somewhat.

[Jenny Wren]

The only thing I can say is I feel for your wife.  I have had the tingling, no numbness for 6 years, I have also been tested for Lupus, Lyme, tons more bloodwork, brain MRI, lumbar MRI, cervical MRI, the only thing found was a bulging disk at C-3, C-4, and a sinus infection.  My neuro wants to test my spinal fluid, but feels that it will probably be normal also.  I plan on heading to a LLMD (Lyme Literate Medical Doctor), because of the reading that I have done on the standard ELISA test is not to promising.  A LLMD will test through IGENEX, which is better than the standard ELISA.  6 years is to long, I hope your wife gets some answers.  Jen