undiagnosed but in search of answers
July 21, 2006 at 9:48 pm
A little over two weeks ago I noticed my toes kept “falling asleep”. It was more annyoing than anything. It then involved my feet. Now below my knees feel funky…heavy, tingly, feels like muscle cramps in my soles and ankles and a detached feeling too. My hands are very mildly tingling and a tiny bit tired.
I did some research…thinking this whole time I had a pinched nerve from all those years of bad posture and whatever….and it has all led me to think of GBS. It hasnt progressed past my knees so I am not too freaked out, but after reading about GBS I have to admit I am a bit scared. Should I be more concerned than I am? Should I not even be thinking GBS? any and all feedback is gretly appreciated.
July 21, 2006 at 9:59 pm
The fact that you are here says something.
You need to find a nuerologist SOON…that is familiar with GBS. The sooner the progression of nerve damage gets stopped the faster will be your recovery. Don’t wait.
July 21, 2006 at 10:26 pm
I live in southern CA…San Diego. Does not having medical insurance risk being turned away for help? And is two+ weeks too long for a positive outcome?? Was a bit worried, now i am starting to freak out.
AnonymousJuly 21, 2006 at 11:19 pm
It is never too late. To make sure you get the care you need I would go to the ER at a University Hospital. They will not turn you away and can help you apply for medicare and medicade after they figure out what is going on with you. If it is GBS, the sooner you get treatment the better. My thoughts and prayers are with you.
AnonymousJuly 22, 2006 at 10:21 am
the best gbs doc in san diego [i forget his name cuz i did not have insurance my 1st 4 years, think it starts with a j] only takes folks w insurance. try ucsd medical college & thorton hosp in la ljolla. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 23, 2006 at 1:05 pm
I hope you have been to the ER or was able to see a neurologist by the time you post again. It is true that it is never too late, but if it is something that is causing nerve damage, the longer you wait, the more damage will be done. It can also be CIDP and not GBS. Most times GBS becomes CIDP, but not all the time. I have CIDP and I think I started out with CIDP from day one. My very early symptoms were numbness, tingling, prickling in toes, then feet which spread up above knees. Hands and arms came next.
Once you know what is wrong, later on, we can help with advice on medications and how to get them free.
AnonymousJuly 23, 2006 at 8:31 pm
gbs never transforms itself from gbs to cidp. what happens is that at the beginning it is hard for a doc to Dx cidp so they Dx it as gbs. later, as others symptoms show themselves, the Dx is changed to cidp which it was from the very beginning. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 24, 2006 at 2:45 pm
Frank’s GBS came on fast and furious and after 6 months he was given a second DX of CIDP. I do believe GBS can become CIDP when the damage continues and never stops as it did with him.
I know that CIDP comes on slow and GBS fast, curious if any others had a rapid onset of GBS then the Drs gave you a secondary Diagnosis of CIDP when you continued to decline.
All GBS cases do not become CIDP.
July 24, 2006 at 6:49 pm
spent two nights in the hospital…went in because I started having a panic attack over the whole thing and the affect on my breathing scared the tar out of me. Then i calmed down and wasnt going to go…knowing I had to go at some point anyhow.
Well I was admitted . My CTscan was perfect. The ordered an MRI which was also perfect….the neurologist was very concerned about MS…the spinal tap was negative for protein, so no GBS he said. All my bloodwork from what I know was all fine as well. my heart scan, carotid artery scan…everything normal and healthy. I am still weak and still tingling…not quite as buzzy, and the wierd pains are at a minimum (had burning poker sensations in my feet, heels and ankles. Piercing ice pick sensations in my heels, tearing sensations from my achilles tendons along the sides of my feet, hot coal sensations on my toes, and what felt like muscle cramps but werent in my feet and legs and arms. When I would try to sleep my whole body jerked and spasmed, like when you fall into a deep sleep and ya jump or jerk, but this was my arms, legs, feet even my back and stomach.) Oh and did I mention it often felt like something was stabbing my ankle bones?? The physical therapist wanted to eval me and made me walk. GAWD I felt like a doofus. I knew my legs were moving but I had to watch my feet to make sure they were going where I wanted them to. She told me not to do that. If was a little difficult to walk a straight line thats for sure, I would have failed a sobriety test for sure. Climb steps?!?! Are you nuts?! I did it, slowly. Stand on my tip toes? nope. my muscles felt weak and it didnt feel like they would cooperate anyhow even tho I wanted them to. In bed I was even afraid at times to even attempt to move my feet or legs because I didnt think they would respond. How wierd is that?! The did move, I jsut didnt think they would even though Iwanted them too. Hard to explain I guess.
I can feel. touch me. poke me (they did). I can feel it. It felt a little delayed but I felt it anyhow. It is more of an inside feeling. Sometimes the “numbness” feels tight as if my lower legs and feet are really swollen. Even my knees felt like they were on backwards. My hands are weak, not sure I could squeeze a stress ball if my life depended on it. I keep having small muscle spasms in my legs and when I walk my balance is a bit off. Guess that is due to the weakness….feels as if I have totally over exerted myself like working out way beyond my ability.
The good news is…I am feeling a bit better. More weak than anything. Very tired. exhausted really. The tingling stopped right about my knees and below my elbows and was mainly in my pinkie fingers and palm near my wrists. My head still feels empty, like i am getting over a bad flu bug or a long sleep deprivation (or too much sleep). So, the dr told me to find a good dr and some anxiety help. o.0 So now what? Oh and in the hospital I kept sweating…buckets and buckets, like when a fever breaks. WHICH IS WHEN I STARTED FEELING LESS PAIN AND LESS BUZZING!!!! I dont know. now what? is it all in my head? Am I truly nuts? Let me tell you that really hit me hard, I am now feeling the beginnings of a depression that wont be any fun.
My sister called me while i was still in there and mentioned that awhile back she too experienced the same damn thing! Our symptoms were not completely identical but similar and the same in a lot of ways. All her tests were also negative. she still experiences periods of tingling and numbness and pain, but blows it off since the tests were all negative. She calls us the psycho twins. Nice huh? I dont like that. I did mention her episode to the dr but he was not in the least concerned or impressed. Apparently thinking we were just a family of fruitcakes.
*sigh* I am off to have an emotional moment. thank you for your support. And your encouragement to see someone.
AnonymousJuly 24, 2006 at 7:43 pm
I really dont want to throw a spanner in the works ….., but a spinal tap can give a [B]false negative[/B], which means that you can possibly still have gbs and another one could confirm it. I just dont want you to think you definitely dont have it, and that the doctors believe that the there is no possibility that you have it. Aaaaaaaagh!!!! I feel like the bearer of bad tidings, I’m sorry.
July 24, 2006 at 9:35 pm
I am so depressed right now I dont even want to consider another tap. Even with the morphine they gave me it was hell. I dont know where else to turn. Things seem to be getting better….after 3 weeks I should hope so. What if it was a wierd virus that didnt show up on anything?? Guess I am grasping at straws. I am still thinking we all know what was going on, but with no where else to turn I dont know what to do.
AnonymousJuly 24, 2006 at 10:37 pm
I know where you’re coming from. I remember when I thought I was having a relapse and they considered doing another spinal …… One of the things they kept saying was that it might come back false negative initially if it was a relapse. I really didnt want to have that done again – and my last one was 19 years before and not NEARLY as fresh in my mind as yours! So I know how you are feeling. I just wish there was someway someone could comfort you. I’ve said this in another post somewhere, its the not knowing whats going on that makes it so awful. I think by knowing, and therefore having the doctors able to do something to start treating whatever it is, is half the battle won. If you want, you can send me a private message with your tel number (or I could send you mine) and I can give you a call – sometimes it just helps a little talking out loud.
AnonymousJuly 25, 2006 at 5:18 pm
Lori, for what it’s worth, I had GBS, and a lot of your symptoms sound like mine. I also had no elevation in my spinal fluid protein level, had “normal” MRI, CT’s etc. But finally was diagnosed with GBS.
I’m so glad you are at least trying to get an answer. If it is GBS, it’s important that you get treatment right away because damage is being done to your nerves. The treatement is designed to slow or stop the damage.
I didn’t get a diagnosis for 3 mos., and no treatment. I believe that is why I have residuals now.
Good luck, and keep coming back here when you need someone to listen or to ask advice.
July 25, 2006 at 7:45 pm
Thank you for all the support. I am in pain today….feels like something is hitting a chisel against my bare ankle bone, my right knee is having shooting pains, some of my toes feel like something is stabbing deep into the joints…anyone else experience joint pain?? and I feel weak, to the point where I have to watch my feet to make sure they are really going where I think they are. I just want to cry and never stop. Honestly feel there is no where to turn and no one that wants to hear about it anymore. I havent heard from the hospital about any other test results for myself…still not sure about any of the blood work they did. On a better note, physically I am feeling a bit better than before if that is possible considering the wierd pains, but at least I can feel something different.
AnonymousJuly 25, 2006 at 8:55 pm
I also had joint pain when I first started with GBS. Everyone is different so what one person has another may not. Just don’t give up. You are not crazy, you know your body and you know whether there is something wrong or not. Even if it isn’t GBS there is something going on. You sometimes have to get very insistent with the doctors in order to keep them looking for the answer. Keep in touch here and we will all try to help keep your chin up.
AnonymousJuly 26, 2006 at 11:14 am
So sorry you are feeling down. Don’t give up.
As far as your test results (and from now on, anything else to do with your medical care), I’m going to give you some advice that may be hard to follow, but will make all the difference in the care that you receive. [
!. B]Follow up[/B], don’t wait for them to call you – call them. Keep calling until you get answers. Don’t take no for an answer!
2. When you have a doctor who doesn’t listen or won’t give you the care you need – change doctors. It’s worth the hassle and could mean the difference between poor outcome and good outcome for your health.
Yes, these things take precious time, and yes, they are a drain on your already limited patience and energy, but you MUST be persistent.
You must take responsibility for your own health. The old days when the doctors or hospitals would do this for you are gone. The sooner you recongnize this and deal with it accordingly, the better off you will be.
If you can get family or friends to be advocates for you, ask them.
Keep coming back here when you need reinforcement or information, or just need to vent. This forum is here to help.
AnonymousJuly 26, 2006 at 11:19 am
I forgot to say that the situation where you can’t tell where your feet (or hands etc.) are without looking at them is called propriation. This is often one of the symptoms of GBS (and probably other neuro. problems too). There are exercises that your physical therapist can give you to help you regain this ability, but first things first.
YOu need a diagnosis. Keep looking for a neurologist who will help you with this. I went through 6 before finally ending up (at my own insistence) at Johns Hopkins Hospital neurology dept.
AnonymousJuly 26, 2006 at 11:42 am
i just posted my own story (a few seconds ago). my beginnings sound so similar to yours. it might help you to read my story. i am completely healed!
you do need to get help & get it now! that is so critical. with each passing day, hour, even minute, more nerve cells are being destroyed. and if you read the literature, some never recover if they are damaged or destroyed enough… you want to halt the progression ASAP & start the healing. it won’t be overnight & you will be annoyed with the symptoms every day until the day you realize you hadn’t thought about them at all…
the thing to remember once you’ve had treatment is to start cataloguing all the things that have improved. i think the positive attitude this causes will help the healing process. prior to treatment, it’s all you can do to keep up with all the new things wrong or old ones getting worse…
good luck with your diagnosis & treatment. stay strong & positive. complete healing is possible – i’m proof 🙂
(i am editing this post with this remark now to let you know that i only read page 1 of the replys before replying myself – that is why it may sound a little out of touch with your current situation. i am so new, i didn’t realize there were more pages to read… my message is still the same – don’t give up b/c there should always be hope) 🙂
AnonymousJuly 28, 2006 at 11:33 pm
It’s curious the number of people who stop by looking for diagnostic information like yourself. There is nothing more valuable than a good diagnostic workup by a qualified medical specialist, and a second opinion, if needed. This board can serve as a great general resource but it should be remembered that we are mostly all former patients, and not medically trained. Hope you are seen by a neurologist soon. Best wishes.:)
July 29, 2006 at 3:29 pm
Im here…I have to post some questions and concerns.
Okay all of the test came back normal…no MS, no GBS, no nothing. The neurologist has blown me off, saying i need to seek help for anxiety. I am not nuts. I AM however dealing with what seems like anxiety attacks, I am scared, feel helpless, and now i feel as if maybe I am nuts. I dont want to feel this way anymore. I want to be me again. I have made numerous phone calls to a university neuro clinic (called the other neuro back to have a referral from him…since he has blown me off he doesnt seem to be too concerned with moving too quickly), a mental health help line (got a number for a doctor…cant call till next week), urgent care, etc. I dont know what to do. My fiancee says to try and get thru the weekend and go from there. I dont feel I can. I want to (still) cry until I have nothing left to cry. I feel so helpless.
Today this is what I am feeling…I am still tingly in my legs and arms. It’s progressed over the span of about 3 weeks (almost 4 now that I can recall actually “feeling” something wasnt right), I feel weak (like it takes too much effort to bother scratching my nose. I can move, it just feels as if my body wont cooperate if I try. Does that make sense??), I can feel when someone or something touches me but I dont think I WILL feel it (make sense??). I have tiny twitches in my fingers and toes (occassionally), but no pain now. I was in pain last week but that has stopped. I feel as if I am on the verge of a breakdown over all of this. I am VERY VERY scared, want it to be better NOW, and am close to the end of my rope.
NOW I would like to know if anyone has experienced this seeming worse on one side than the other…but still having both sides affected…and then seems to switch to the other side. Some moments worse than others? Anyone experience the progression of tingling and weakness but nothing else? How long is the progression…I have read it peaks at about 3-4 weeks and the wekaness you feel and your other experiences will not get worse and recovery is slow. How insistent do I have to be before I am taken seriously?? How do I get someone to listen to me?
I have three kids to worry about, I am mostly thinking about them. They are worried…I dont lie to them or keep them in the dark, I feel they need to know what is going on to an extent that they can handle. My fiance feels helpless.
AnonymousJuly 29, 2006 at 4:24 pm
I’ve been reading about your problems and troubles. And I’ve read all the replies and the one thing that no one has mentioned or suggested is the power of prayer. I know it’s a wonderful way to bring peace to your mind and you are so troubled and worried and depressed, that you can use some peace right now, huh. God cares about what you’re going through and He’s there for you if you’ll just ask Him. I’m not a minister, but I know from experience how much help you can get from just asking God to be with you and give you peace. Don’t give up, and by the way, ask Him to give you wisdom as to who to ask for help, which doctors to go to, how to proceed.
God bless you, Piano Woman
July 29, 2006 at 5:06 pm
oh trust me, I have been praying a lot. I rarely ever ask for anything on my behalf. My prayers are almost always for other people…I say almost always because I do occassionally ask for help for my family or myself. I have asked Him for strength, to make it go away, for answers…everything short of a miracle. Not sure how He feels about begging, but it has come to that. I wish I could scream from a mountain and have someone reach out and say “I can help make it better, here is the miracle you are seeking”. That is so silly, feels selfish when there are others worse off than I am. It also feels awkward because I am not someone any more special than the next person so what makes me think I deserve that miracle more than you or someone else. I want to share it, make everyone here and elsewhere better. How do I do that? How can I beg and plead for my own help and not want to help others? I feel so lost.
AnonymousJuly 29, 2006 at 10:49 pm
First let me say there is a difference between ‘crazy’ and ‘panic or anxiety attacks’. I would ask you doctor for a mild sedative to see if it is anxiety, something like xanax at a low dose. I say this because I have anxiety attacks (out of the blue, no triggers) and experience extreme pain in different areas. Usually it feels like a hot poker being forced thru my sternum, it hurts to breathe, it hurts not to breathe. Sometimes the pain is focused in an area that is over stressed, sometimes my back, sometimes my feet if I have been up on them to much.
I would also consider seeing a ortho doctor (bone doc). You could possibly have something going on inside the bones of your ankles or the joints. This could cause the cascading of other symptoms due to worrying.
ALWAYS REMEMBER, you are you best advocate! If you feel like something is wrong then usually something is wrong. Don’t stop asking questions, FROM ANYONE, until you are satisfied with the answers or the problem is resolved.
Write down all of your symptoms, when they occur, what you were doing, what you had just done. You might find a pattern or a clue to help solve your issue.
AnonymousJuly 29, 2006 at 10:50 pm
:rolleyes: A clarification is needed regarding a post in this thread regarding GBS usually becomming CIDP. I think the poster may have intended to express that CIDP usually starts with CIDP (?) and not the other way around. Most cases of GBS do not proceed to CIDP, according to studies I’ve read.
July 31, 2006 at 12:37 am
questions…to add to my others posted above…
did everyone here experience paralysis?
How far did yours progress before you felt it hit a peak? I have read that this usually reaches some sort of peak after approximately 4 weeks. Have others experienced this?
I know each case is different but I’d like to know if there are others who have had GBS and only got “so bad” meaning they didnt experience paralysis, vents, etc.
What is considered “mild” “moderate” “severe”? And when did you start feeling even remotely better?
AnonymousJuly 31, 2006 at 7:27 am
[QUOTE=fairly_odd_mother]questions…to add to my others posted above…
did everyone here experience paralysis? [COLOR=”Red”]I was paralysed from the neck down for 2 1/2 months. Paralysed from the waist down for about 3 months.[/COLOR]
How far did yours progress before you felt it hit a peak? I have read that this usually reaches some sort of peak after approximately 4 weeks. Have others experienced this? [COLOR=”red”]I started to stabalize at about 3 to 4 weeks. I think it took about 2 weeks to hit rock bottom and about another 2 weeks before they brought me out of coma.[/COLOR]
I know each case is different but I’d like to know if there are others who have had GBS and only got “so bad” meaning they didnt experience paralysis, vents, etc. [COLOR=”red”]My second attack of GBS was caught quickly. I walked into the hospital very weak and 8 days later walked back out.[/COLOR]
What is considered “mild” “moderate” “severe”? And when did you start feeling even remotely better?[COLOR=”red”]The terminology is hard to define. My first episode would be considered severe because of how far I deteriated but I had what most would say ‘a full recovery’, being able to come off of all pain medication, doing everything I wanted to within reason, and some fatigue issues. (This starting in Nov 2002 to July 2004) My second attack (the end of July 2004) would be considered mild because I did not deteriate hardly at all BUT I have yet to recover from the pain that I am still plagued with to this day. I have not been able to come off of any pain medications and have steadily had to add or increase medication to keep the pain under control. I can still do anything within reason but the effects of the medications are causing their own set of problems and the fatigue sets in quicker.[/COLOR][/QUOTE]
July 31, 2006 at 8:58 pm
thanks angela…anyone else?
AnonymousJuly 31, 2006 at 9:19 pm
I didnt know if I should reply as I thought maybe you were looking for answers from people who were not totally paralysed, but I thought maybe I should post….
I probably hit bottom after about 2 – 3 weeks. I was totally paralysed and was on a vent with a trach. for about 6 weeks. I remember them putting eye drops in my eyes all the time and also taping them closed at night (not sure if that actually was necessary). I cant remember at what point they started my Plasmapharesis, but I had a few rounds of that, and then apparently had a seizure because I had a reaction to the plasma that was being returned to my body. Even though I had a reaction to the plasma, I think that those few days that I had the pp were extremely beneficial. Got pneumonia, but apparently that is common for people who are ventilated. After the trach. was removed, I was sent to the neurology ward, and stayed there for about (trying to remember) another 3 weeks (could possibly be a little more), where I went through intensive physical and occupational therapy. Towards the end they allowed me to go home one weekend, but I had to show them that I could stand on my own with my eyes closed for a few seconds. Once home, my mother would take me to physical therapy almost every day for a number of months. There they taught me how to walk correctly, they also made me learn to crawl, which the hospital had not done, and I thought it would be simple to do since I could walk….. well, it wasnt. In anycase, thats my story in a rather large nutshell.
July 31, 2006 at 11:09 pm
the reason I am asking so many questions is for a couple of reasons really…
One, of course, to learn all I can about this because I am not accepting what the doctor told me and need all the info I can get to approach other doctors and demand someone listen to me.
and two, I am seriously considering writing a very long article containing facts, case histories (minus names unless someone was okay with a first name being used), and other information and posting it on the net and trying to get it published in a medical journal of some sort. To educate doctors that they need to realize not all cases of such things (GBS and otherwise) present themselves the way thier textbooks taught them. I also want other people to be armed with knowledge in order to approach doctors, to know what is involved (worst case scenarios, best case, etc), and know there is hope in spite of the fear.
I am starting week 4…I have been doing a lot of thinking lately and realized that this all started before my hubby left for a business trip on the 12th of july. I remember feeling the tingling in my toes before that and the week before my son and I went to a mall and I recall my right foot and leg feeling really odd along with tingling and numbness (thought I had sat wierd in the car for the short trip). And it went from there. I have had no paralysis (knock on wood) except for feeling as if my body wouldnt respond if I tried to move and arms and legs feeling way too heavy. I have also noticed if i get over stimulated I feel much worse and have a spacey-out-in-left-field feeling, get very “buzzy” in my legs (mainly my lower legs and feet), my lower arms, and my face and neck (the tight turtleneck feeling…maybe not quite turtleneck, but a high crew neck). If I take a B complex, a benedryl, and grab an ice pack and a wet towel and lay down I start feeling better. Less buzzing and it is just tingly. The “crewneck” thing freaks me out, but I can swallow and talk and all that. Ate my first soild food tonight! I havent eaten in about 2 weeks, lost 10 pounds, and am sick of Nutrition shakes but it is all I have been able to “eat” because I have had absolutely NO appetite.
I am praying hard this has reached its peak. I will be making more phone calls tomorrow and have my hubby ready to head back to the hospital at a moments notice. He and I have decided to head over to a walk in clinic that i talked to Friday (only person so far who has listened to me and seemed concerned) and see if I can get an immediate referral to a neuro. I know if they do a nerve test they will see that there is something wrong even without another spinal. The other neuro said if that test showed a problem they would start the PP. I sure as hell hope there is no reaction if I have to go thru that. I want and need to start recovery from whatever is going on. I can not accept “anxiety” as a diagnosis since it has progressed the way it has. I want to help educate people with what I learn and hopefully educate doctors as well. I greatly appreciate everyones input and help. Thank you!
Still praying for myself and everyone here
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