I hope this posts correctly in the introductions area? I was struck down by some odd mysterious illness almost exactly one year ago on Aug 26th, 2014. I was out walking with my little ones when my feet began to tingle and feel strange. Within an hour I had foot drop and could hardly walk as my feet just "weren't listening" to me. That night the burning, tingling went up my calf and my legs kept buckling as I tried to walk. I was admitted to hospital and they decided it must be lyme disease as I had been diagnosed with that a few weeks earlier (it made no sense as I caught it with the bull's eye rash right at the beginning.) That night, it crept up to my thighs and started in my arms. My legs burned, felt like lead weights (literally) and I could't walk. They did a spinal (looking for lyme on day 2.5) MRI's, bloodwork etc. and were stumped. Meanwhile the infectious disease specialist was saying that this was NOT lyme but noone seemed to listen. I was told I needed a nerve conduction study but the rotten overseeing doc I had sent me home!! Over the next two weeks I got worse, so much so that I couldn't even wiggle my toes, I could stand, walk, crawl, dress myself etc.
The follow up appointment with a neurologist was cancelled (he cancelled ALL appointments and noone know why) and I had to wait for 2 1/2 more months to see another. She kept throwing lyme around also, eve though I told her that 3 Infectious disease specialists had said definitively that it was NOT lyme. I finally had an EMG done at month 3 and oddly it was normal.
In that time, my reflexes went from diminished to non existent, but but the time of the EMG they were back to diminished again. She sent me home saying it must be Lyme (ugh!) Still unable to walk 5 months later, I found yet another neurologist who said she was quite certain it was GBS. But as they did the spinal too soon and the EMG too late she couldn't confirm it. She offered IVIG but said it would be "experimental" as the diagnosis wasn't firm and therefore wouldn't be covered. She offered another spinal, but the first was brutal and left me with a spinal headache for 4 days so I declined.
Anyway, other the next few months I finally began to make progress, often with setbacks (2 steps forward, one or 2 steps back) but by May things picked up and by End of July I was about 80% again. Walking quite a bit but always with my wheelchair close by. I pushed and pushed and pushed because I could and them about 3 weeks ago (after a LOT of stress) BOOM, my legs went radically backwards again -- not to 0% as they were, but more like 15%. I'm back to my wheelchair 99% of the time and they HURT so intensely that it almost takes my breath away. I don't know if it's nerve pain per se, but it feels either like my ligaments in both calves are severely knotted and cramping or my entire lower legs feel as if they are saturated with pain. (I should add, it's affecting both legs from the knees down) My reflexes still appear to be intact for now and when I'm sitting down, I can move my legs and feet around ok (I never could have done that a year ago.) So please, please your thoughts....does this sound like GBS? Is this another setback because I pushed too hard/had a ton of stress or a full on relapse? Could it be CIDP? Would that only affect your lower legs?
I'm sorry that this is so long...I just don't know where to turn. I'm seeing my neuro again Sept 14th but I honestly don't hold out much hope. Any feedback would be much appreciated!! I know I've suffered far less than many of you and I don't want to complain. Your strength and support os awe inspiring! Be well!
Hi Blessedmum! I am so sorry that you have had such a hard time. I am not sure if this is a relapse or CIDP. I initially had the most trouble with my legs and face but it did not hit my legs as hard as yours. Just curious if you were sick before this "relapse." I had a sinus infection that seemed to kick off my relapse but I have recovered pretty well after about 6 months of trouble. I wonder if any of those with CIDP followed this type of course before they were diagnosed. I hope your neurologist will be able to diagnose what is going on and help you get back on the road to recovery. Best wishes to you!
I don’t know where you live, but it sounds like you need new Dr.s. I’m no doc, but it sounds like you have some form of GBS (there are several) the test for GBS is a lumbar puncture to see if you have elevated proteins in the spinal fluid. Several courses of treatment if it turns out you have GBS. Test is not without its risks apparently, but worth doing. It is how they diagnosed my GBS early on.
You should have gotten the second Spinal, that is the most effective determination of heightened protein levels and surest sign of GBS or CIDP. Two years ago, a few days after recovering from the flu, I had the same symptoms. Idiot Neuro in denial also sent me home with "Oh. it'll go away". Got second opinion. After spinal confirmation, IVIG stopped my progression of nerve damage at the hips. Had a relapse after about 8 weeks, now on IVIG every 10 weeks and weaning off gradually with lower dosage and extended intervals. Still have nerve damage resulting in strange sensations of numbness and cramping in feet and hips, and peripheral neuropathy but fully functioning. I have read of folks fully recovering with no treatment but yours sounds like CIDP. Get a Spinal from someone who knows what they're doing. A few days headache would be worth the knowing.
Yes I agree you need new doctors these doctors don’t seem to know what they’re doing. It sounds like you might have CIDP which comes and goes. GBS usually comes on very quickly in a matter of 24 hours this is what I had. I pray that you find the right doctors and get your right diagnosis!
Blessedmum,
I wept at your story because it’s common. Yes, you have gbs and a mild case but you MUST have IVIG. And another lumbar puncture is a fraction of the pain you could suffer.
GBS is rare but the body’s immune system systematically destroys the protective myelin sheath of the peripheral nervous system leaving the nerves exposed, ineffective and highly vulnerable to damage. The PNS is complex and runs with the automin nervous system. The ANS controls those functions of the body we don’t control: heartbeat, respiratory, blinking etc. however, some of the ANS is controlled by the PNS. As a result the lungs can shut down, the heart. I spent nearly a year in hospital on life support, paralyzed from the nose down and ten years later I am confined to bed in chrinic pain and chronic fatigue.
The second neurologist hit it dead on. You need to be in a top notch hospital, then rehab. Until the myelin sheath grows back your axons and muscles are very vulnerable to permanent damage. Physical therpy must be gentle and pressure, pain free.
B On september 14 ask for immediate treatment for GBS. As for Lyme, there’s very little known about it. It’s possible that Lyme started the catalyst but you have GBS. Take care of that first. You can have a Western Blot test for Lyme later. Right now you need a spinal protein count asap.
B Do not act gingerly with this. Too much is at stake; too much time has passed already. The function of muscles and limbs wax and wanes based on fatugue, not relapse. I’m in and out of wheelchairs always. You have a mild case because you’ve not suffered respiratory or heart failure and have not fallen into a coma, but IVIG can bring a lot back. They call it experimental because no one’s done much research on GBS. Read Dr. Gareth Perry’s book on GBS for clinical information. There are many books written by patients but they tend to become dissertations of blame and anger. Read Sue Baier’s book because that’s the one taught in nursing school (bed number ten) and leave it at that.
By 5pm on September 14th you must be in the hospital for IVIG treatments. Before if possible.
I just aknowledged my ten year anniversary with GBS. If I can help more, please ask. My treatment was done at Massachusetts General Hospital and Boston Spaulding Hospital.
Dave
If I was in your position, I’d go straight to a doctor and not leave until I got another lumbar puncture and a better diagnosis. It does sound like GBS, and if it is, you should get proper treatment.
it sounds very similar to my expeience. started out very tired after shopping a few years ago. that night my arms felt weird when I put on my jacket. next day when I got out of bed my balance wasn't there. stayed that way till my wife took me to hospital Christmas day. got sent home but went back next day as symptoms were getting worse. finally admitted to hospital and then next day was diagnosed gbs. I had an emg done with also spinal tap for confirmation. during this time my back felt like it was literally on fire. I had to use a walker as I couldn't walk on my own. just walking was very taxing. did five days of ivig and started to recover. out of work for a month but I pushed that also. my feet went numb for 2-3 weeks when I left work but I was able to function. I was extremely tired all the time. trying to go work out at the gym was brutal at times but now I am better. not 100% but better. I hope this helps and good luck
You're experiencing exactly the same symptoms/patterns I did. Other's have said what I'll repeat: get to a facility that's knowledgeable and able to do the spinal. BTW my spinal was so painless, i never knew they'd done it. I went to Stanford Hospital, a teaching institution, and they recognized and treated it immediately. Take comfort in knowing you're not alone, many have gone through this, it can be treated. I was beyond fortunate in my own experience to have had relatively immediate treatment and i'm back on my feet, around and about in every manner imaginable. It'll be the same for you once you get the right help you need. Stay determined and good luck!
My goodness - I cannot even imagine all you have gone through. It is too bad they did not diagnose it a bit early - I am not sure that would have made any difference. I sure hope things will get better for you - even though it is very slow. It appears you have accepted what has come your way. Blessings to you !! Nebretta
Hi I think . I'm not a Dr , but a gbs who had it very sevre, it sounds like a relapse. Make sure you tell your neurologist how you feel and make sure they listen to you. Hope you get on OK keep me informed.
I feel for you BlessedMum....7yrs ago now...i went thru similar thing only mine was from the Swine flu injection...meant to prevent it but gave me GBS instead! In simple terms...it is identified by 'ascending paralysis'...starts by numbing and tingling of the toes then works its way up the body. Takes just 3 days from the onset for all this to happen! Another sign...happens very quickly! And yes, burning of the extremities and tendons and nerves is soooooooo painful...excrutiating and for which there is no pain relief. Legs feel like lead...unable to be moved cognitively...know it all too well. I also have Ross River and that was a cruel virus but GBS is 100 times worse. There are different levels as to how bad it gets you and like you...Neurologist knew jack s**t...my ankles turned purple from the tests and he cld see that i cld not lift my legs but tried to tell me ...no nerve damage so not GBS! How wrong he was. Many years later i find i have paralysed/collapsed muscles in my throat and my legs now...that will never recover! The secret to recovery is quick diagnosis and care. But if it has taken years for Doctors to diagnose it correctly...permanent disability is usually the result as it is in my case. For the record...Steroids is the only thing that took away the pain and inflammation and gave me back my ability to walk and care for myself...after over 3yrs in a wheelchair. Life changing they were...but here i am almost 8yrs later still trying to get off them because of the longterm effects it can have on the body. I go off them...lose the weight, suffer the pain which never ends and so go back on them agn! Sadly, there is no quick fix...some recover pretty well, some don't...especially if they find out 'too late'. Think back to what you were doing just before your toes went numb...this will give you a good indication if you had a vaccine??? or was around someone who was sick with a virus???? Doesn't just happen...you have to come in contact with it. Good luck in your search for better health...do hope all our replies have given you some direction and better insight to what is a very debilitating virus for which there is no cure and for some of us...no full recovery. Still...you can get a better quality of life if you are in the right hands so find yourself a good doctor who actually cares and knows what he is talking about. :)
I am so sorry. I was told I had GbS on October 23, 2014. I was told I had CIPD in May 2015, and told I have Otipathic Transverse Myeletis July 2015. it is a shame the doctors do not do a through diagnosis. it seems like it is all about money and health does not matter. I have had 6 MRI’s, 4 scat scans, 1 biopsy, many, many, blood test, 2 Emg, 2 X ray’s,etc. I am slowly healing at home. I am still not able to walk and have the bowel and bladder incontinent, tingling, numbness, and burning sometimes in the lower extremity. I have put my trust in God and not the doctors. These are so rare until they really can’t tell you what the body is going to do. I am praying each day that I get up and walk real soon. I have had 5 months of therapy but until you get the right diagnosis there is no use of taking treatments for something that they don’t know for sure. I had 2 Ivig treatments also. The body can heal itself overtime I do believe. Please stay strong, never lose your “Faith”, and please be encourage. I know it is very hard but I pray constantly all the time. I know God is a doctor and a healer. I will say a special prayer for you.
Lyme can trigger GBS (along with other things that I can't mention here).
Please keep researching and go for that spinal tap.
In my case, lyme or a virus triggered or a combination of both. (I won't say where I got the virus from......that is for you to research)
The lyme blood tests are inaccurate (along with many of their other tests). I have had lyme / and the nasties..called (co-infections that come with lyme) for over 20 + years. .......and had several lyme tests during that time.......so don't put your faith in tests like I did.
If they do the spinal tap and wait around a few days (sticking the sample in the fridge...it will likely kill the lyme / co-infections / other possible parasites......before they get around to looking at it........so please keep that in mind.
My goodness! I can't believe the outpourings of responses and support! A heartfelt thank you to each and every one of you for taking the time to write back. And before anything else, healing prayers for all of you to finally be able to put this trying journey behind you. The physical journey is of course a nightmare, but honestly, the hardest part for me has been the emotional roller coaster that goes with it. I can only hope, pray and believe that I will keep moving onwards and upwards!
Anyway, all of your wonderful responses actually left me with a few questions I was hoping you might be able to answer. So here goes...
I'm certainly going to ask my Neuro about Ivig, but I was given to understand that it is only affective if administered within the first few weeks after onset of GBS? Is this correct? Although, I do understand that it's very helpful for CIDP and probably relapses as well?
Speaking of relapses or CIDP, does that mean that the nerves basically begin to demylinate again and the whole thing happens all over?
And finally, (bear with me, one more question!) Can GBS turn into CIDP? Or has it always been CIDP that was misdiagnosed as GBS in the first place?
My onset was literally within hours, so I've no doubt it was GBS, but I'm not sure what that means from here?
Well, as always, THANK YOU for reading and responding. It is truly wonderful to finally find a support group where people are actively involved. God Bless all of you and Happy Healing!
Thanks so much for responding! The whole lyme thing is such a huge mess, isn't it? I was checked for lyme (including in the spinal fluid) and had multiple blood tests. I was aware that it could trigger GBS but all three of the neuros I had seen didn't know that! (I found a few references on line), so I'm guessing that was it? I looked into co infections, too but I don't think I have any of their symptoms? Boy those ticks are nasty buggers! Be well and take care. :)
cwendyhawk said:
Lyme can trigger GBS (along with other things that I can't mention here).
Please keep researching and go for that spinal tap.
In my case, lyme or a virus triggered or a combination of both. (I won't say where I got the virus from......that is for you to research)
The lyme blood tests are inaccurate (along with many of their other tests). I have had lyme / and the nasties..called (co-infections that come with lyme) for over 20 + years. .......and had several lyme tests during that time.......so don't put your faith in tests like I did.
If they do the spinal tap and wait around a few days (sticking the sample in the fridge...it will likely kill the lyme / co-infections / other possible parasites......before they get around to looking at it........so please keep that in mind.
Hang in there, Shirley! It took me close to 8 months in before I was able to start walking a bit again, so don't get discouraged! I'm with you. I think God and our bodies can do amazing things! God Bless and be well!
Shirley Harvey said:
I am so sorry. I was told I had GbS on October 23, 2014. I was told I had CIPD in May 2015, and told I have Otipathic Transverse Myeletis July 2015. it is a shame the doctors do not do a through diagnosis. it seems like it is all about money and health does not matter. I have had 6 MRI's, 4 scat scans, 1 biopsy, many, many, blood test, 2 Emg, 2 X ray's,etc. I am slowly healing at home. I am still not able to walk and have the bowel and bladder incontinent, tingling, numbness, and burning sometimes in the lower extremity. I have put my trust in God and not the doctors. These are so rare until they really can't tell you what the body is going to do. I am praying each day that I get up and walk real soon. I have had 5 months of therapy but until you get the right diagnosis there is no use of taking treatments for something that they don't know for sure. I had 2 Ivig treatments also. The body can heal itself overtime I do believe. Please stay strong, never lose your "Faith", and please be encourage. I know it is very hard but I pray constantly all the time. I know God is a doctor and a healer. I will say a special prayer for you.
Sounds alot like my story. Even how you were sent home by the hospital. I was sent home by two before i went to mass general. Their neurology dept. Is great. I never had a spinal because it was too late. I am on lyrica during the day and nortriptylin at night for ths pain. I do yoga once a week, low impact. It has helped my balance. I also do accupuncture once a week with the electrodes, helped my circulation. I eat a gluten free diet which has helped the swelling due to poor circulation and i take lots of vitamins. All with my dr. Approval. I am 80% better. no more cane. I still have pain and i cant run but a year and half later, i have made progress. Good luck and dont give up.