undiagnosed but in search of answers

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.
Good Luck.
AL

hi fom & welcome,

yes, you should be very concerned. you need to get an emg/ncv asap from a neuro that knows gbs. where do you live? take care. be well.

gene gbs 8-99
in numbers there is strength

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.

Jerimy

I concur with everyone here……………………get to the ER immediately !!!!!!
We are not kidding!!!!!!!!!!! We will be praying for you. Please return here (after you go to the hospital), and let us know how you are. Take care.

Perry

fom,

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

FOM,

Ditto everyone!! If you havent done something, please dont wait any longer. The quicker you find out what is going on, the quicker they can start doing something about it.

Hello,
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.

Liz,
I was not aware that most GBS becomes CIPD. Is this correct? If so, now I’m really scared!

Suzanne,
I should have made it clear that GBS does not always become CIDP. GBS hits hard and fast, CIDP moves slower and that’s how you know the difference.

suzanne,

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

Liz and Gene,

Thanks for putting my mind at ease about this!:)

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.

Lori,

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.

Lori,

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.

Hi Lori
I’m new to all of this, but I wonder if your doctors considered that you may have an inherited neuropathy like Charcot Marie Tooth? Or Lyme Disease?
Helen

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.

Hi Lori,
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.

Take care

Sherry

Hi there – you also prob should have had an EMG, this will tell a neuro what is going on with the nerves in your arms/legs. If I were you, I would find another hospital and get a second opinion. Your health is priceless, better to be safe than sorry.

Cara

Lori,

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.

Lori,

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.

Good luck.

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) 🙂

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.:)

Where is the “Fairly Odd Mother” now????

I hope she is ok?????

Perry

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

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.

Angela

: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.

It’s good that you’ve been praying, and believe me, it’s not selfish. God is big enough to hear everyone’s prayers, even those that have “little” problems, which yours aren’t. God bless you, PW

as we presently know it, no cases start as gbs & become cidp. some cidp cases do start out with a Dx of gbs even though it is cidp cuz the doc can not tell that early in the game that it is cidp. take care. be well.

gene gbs 8-99
in numbers there is strength

[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]

Angela 2002/2004

Lori,

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.