Paralysis Like Episodes

Symptoms and Treatments Symptoms - CIDP
1

About three weeks ago I had a very scary incident when I got up to leave after seeing a moving with my husband and realized that my right leg felt paralyzed. It was extremely numb (more than my normal buzzing and tingling) up to my hip and felt very strange. I also had extreme weakness in my opposite arm and my whole face and a great deal of my scalp was numb too. I had a very difficult time getting to my handicapped parking space. I walk very slowly normally and can't walk very far because walking causes me so much fatigue. It took more than an hour for my body to get back to my normal level of numbness and tingling. Since then I have had a a few other instances of this happening while I have been at home.

This Tuesday I had an even more scary incident. Early afternoon I was in a fair amount of pain and so tired so I took a Tramadol ER and got in bed to watch TV. An hour later when I went to use the bathroom my legs felt so heavy so I shuffled there and back without really lifting my feet. About fifteen minutes later I went to reposition myself and I couldn't move. I didn't have the strength to lift any of my limbs or even my head. I could move my fingers and feet, but couldn't move my body. After about 45 minutes I regained enough strength to pull myself upright by grabbing on to the headboard. I called my husband and he took me to the emergency room. The doctor really didn't do anything but document her findings from my neuro exam. It was about three hours until I could walk again this time. I had been waiting to get in to see a new neurologist late August to try to get a diagnosis. After my scare on Tuesday, the neuro office accommodated me and got me in today. The neuro I was scheduled to see in August was out of town so I saw the nurse practioner. I spent almost two hours with her. We may be ordering some new tests and a skin biopsy once she get all my records from my other doctors.

I am pretty new to peripheral neuropathy and even newer to learning about CIDP. All of my other symptoms present like very much like remitting/relapsing CIDP, but I got the impression from her that these incidents I have been having don't fit in with CIDP. She mentioned Myasthenia Gravis to me, except I reminded her that I have quite a lot of nerve pain. Does this type of incident sound unusual to those of you that are more knowledgable? I would love to hear your insights.

Thanks!

Susie

2

Sometimes I have one of my whole arms 100% dead at night. It last for 10 to 20 minutes.

When this began, years ago, I was afraid. Not now.

Do not worry to much Susie.

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Sounds very familiar to me. And I have had CIDP since 2002. The times that I would get that extremely weak, it would stay with me for several months for which I had to be in a nursing home. I too have wondered if my symptoms weren’t more like myasthenia gravis, minus the eye part.

4

i get these episodes, actually im having one similar right now. I call it jelly legs lol. I have issues witht he pressure in my brain, i thought it was that, maybe it is the cidp.

5

I lost the motor skills in my left hand about a year and a half ago, ( I too am left handed) and it sucks when I played guitar previously for at least fifteen years. I still haven't got the use of my pinky and ring fingers back, but won't sell my guitar. My Neurologist thinks this might be due to a pinched nerve in my elbow, but would it last this long, I don't know? Now I'm getting episode of weakness in my right hand in the same position, pinky and ring finger, luckily these episodes only last for an hour or two. Gary

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I have my hands go numb while sleeping sometimes. They feel completly dead upon waking some days. I did not think this was attached to my CIDP. I thought maybe I was sleeping wrong or something. I see above someone else has this symptom so now I know it is probably my CIDP. I have to shake my hands really hard and massage them to get the feeling back. The feeling does come back but my hands ache for most of the morning and don't grasp small items quite right and I drop things. It does not happen during the day, only at night when I sleep.

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Susie…are you on IVIG infusions?, hOwmlongnhave you had CIDP?

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I am all too well familiar with this. It's almost a daily basis for me. My feet and legs become 100% dead, I have no feeling and no movement. I am slowly learning that for me, it happens when I've over done it, but not always. Sometimes I don't have to be doing anything and I try to get up and I can't. It can take anywhere from 15 minutes to a few days for me to regain any kind of strength. I find myself always overly exhausted but I don't sleep anymore. Don't worry. I've found that there is wonderful support to come with this and most of the doctors I have come across have been very supportive and helpful. You take care!

9

so sorry Susie you are having so much trouble with your legs.

I get pain and numbness and also some times I can't move my espeically left leg & foot. Lately I also been expericing TIA's....the hospital I was in almost two weeks ago said they thought I might have MS? But it was what they thought they saw on my CT scans which were enlighten and non enlighten. I get a lot of what you are experiencing. But yet have not been told I have CIDP...so far Serve Sensory Polyneuropathy...which can change as I go thru new doctors...?

I hope you find help for your pain and understanding what is happening to you...please keep me updated please.

very interested....because of the simular things that is happening to me.

I pray for you and others...

God Bless YOU Susie....

10

Hello Susie, It's wonderful to know there is someone close to by....sometimes I guess at least for me, I feel I'm alone with all of this. It is so hard to live thru our illness without encouring people that we find here. Thank you for your reply back to my comments.

Well I know of the group of doctors that you are going in to see. I did simular as you have done but you gotten further then me. I had all my records sent to Phoenix Neurological Associates, and got apt back in June. It took me 3months to get it to see one of their doctors too. I was told they are the best for what is going on with me... But found out that I couldn't see them right now. I have insurance issues and I am working on getting a referal...but since that day I haven't had any type of Neuro doctor. It's hard when I don't have maybe correct pain med's, etc.

It's hard to know their might be someone around the corner so to say and can't see them. Lately I had some other weird things going on with my body and now my head. I saw this neuro doctor at one of the Banner Hopitals and I like him...and he was willing to see me. so tomorrow I get to see him...

I still hopeing for anything right now...with my PCP told me last monday that he just doesn't know what is wrong with me....I hate all those tests coming back saying the word, "normal"! I know they should be looking in the ways that is talk about so much here in this support group...which I haven't had yet...only EMG's.

So talking about my trials and stuff....I do hope you find your answers...I kind of in the way of thinking of not giving up....just being more patient....I have no choice but to do that.

I know if I have some type of diease whatever it may end up being...I just hope for a name...something about a name!

I guess that is all I hope for.

Yes you are welcome....prayer for me has help me thru bad and good times...lately seems like more bad times....so I put myself in a better spot by praying...

I hope you find everything you need when you get testing or whatever they need to help you

Best Wishes and all good things for you

Ruthie

Susie said:

Hi Ruthie, I live near you in Scottsdale. I hope to have a diagnosis soon. So far, I can rule out what isn't causing my neuropathy, but I don't know for sure that it is CIDP. I have been to so many doctors over the last three years and either they straight come out tell me they don't know what it is or they just try treating the symptoms. I am now going to Phoenix Neurological Associates and I believe they will figure it all out when they get all my records and order any additional necessary tests. Not knowing for all this time what is really going on has been the most difficult thing for me. A diagnosis of CIDP is better than all this uncertainty.

Thank you for your prayers. I will say a prayer for you too!

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The Neuro I saw was from the hospital and he told me today I had a small stroke I had the TIA's from that....he told me it was on my right side, which I didn't know that....I still am doing ok....because the Pylax is working...no more so far (lucky stars I hope is watching over me) TIA's since I started on this med...keeping fingers cross again...I feel too young but you read people who were just children having a stroke...they aren't fun...I am still talking funny...and still have some numbness on my left side of my face...walking about the same with my drop foot...a lot of weakness on my complete left side right now...a little on the right...but it was a tiny stroke in size....I am praying for thankfullness it could of been worse... I feel very tired a lot. pain yessssssss lots of cramping so bad on some days I cry out loud. I wish I could go to a pain spiecialist....I have apt in the morning with my PCP...I will again ask....

OK I too try both Lyrica and gabapentin which were started much to high of doze! I did go temp. blind with the gabapentin...really I couldn't see without turning my head weird to look thru the bottom of my eye. Anyway my husband has been bagering for me to try Lyrica again...so I am right now...just the lowest doze they have...and

they are making me feel very tired too......Do you get horrible headaches Susie? I wake up with them, and sometimes during the late afternoon I get them so bad. So this new Neuro doctor I saw just writen me up a Rx I haven't pick it up....one thing I think might be good....he told me it also makes you loose weight....which I could really use....hey I think if they dont' work for my headaches the inches I might loose will make up....what you think? lol

As for all the pain you have so it sounds like everywhere on you....down each arm, down each leg...I don't know what to say....except whatever you are using God Please give them to me too!!! smile.

I live on Hydroconde 7.5mg....and now my husband talking me back into Lyrica I hope it all works...Yes the doctor today said those two med's you said are what they use for neuropathy....so what I am happy you have a sept doctor what a great idea!!!! I go in tomorrow see my PcP and I am again going to plead with him to send me to pain speicialest....I know that the shots I had two years ago in my lower back has help me until recenly when they wore off. I had two epdurals. Anyway, they said I could have 3.....but two did it for me. I wish for more right now.

OK YOU sound so badly in need for help...I wish I knew but as you can see I am almost same boat looking for the answers. I know that the doctors you will see by all the things I have heard, that you will be in one of the best hands here in AZ. They speicalize in neuropathy.....and so they should help you....I am working on getting there soon.

And I can't wait for the "name" of what it is I have....today the Neuro I saw told me also that (sorry I just went blank) ok I remember now....that all the tests and they tested for MS...and my brain didn't show it....so he said I didn't have MS....but there are a lot of dieases that look like each other....so I am hanging in there// Hope you are too susie...keep hanging girl...

What a bummer living so close to a great place such as MayO clinic....what a shame....I don't understand why some insurances they take and others...I guess it's the almighty dollar.....always seems to be. Iam also sorry for that.

I have medicare because of my copd....and it just started the medical part this June...so everything I had went away and now I have what I have with my medicare hook on....that is why I had to start over with those doctors...O me O my I live like a frog so I hop around waiting for one thing or another to drop on me with my forever hung up body....isn't life like that....we always waiting for something around the corner....it's suppose to be "better"....mean while we surfer with pain...and not knowing what it really is. I might as well be the frog and jump on home...I guess.

So now they say I can change to a better polcy etc...when I turn 65.....funny huh..... I stay where I am with the United Health Care Plan....and hope that it will be true next year something better then now...

I do hope all your pain will be something of the pass....and you will know for sure if it is CIDP....or??????

it quaks like a duck, and walks like a duck....it must be a duck!!!!!! that is how I feel right now with all the possiblities!

NO this doctor Neuro doctor nice as he is can only treat me with his bag with what you already and I have already taken....it's on ward

Yup I live out here in Queen Creek......love it here....Scottsdale is nice, busy there, were slower pace....lots of things are a like in both places....like horses...etc. You have more doctors I beleive.....were not that grown up still country here. smile

ruthie
Susie said:

Good luck tomorrow with your neuro visit! I hope this visit get you closer to a diagnosis that makes sense. As far as pain meds go, I see a separate pain doctor and then just let all my other doctors know of any changes with meds. I have a tremendous amount of pain with these neuro problems. My journey has involved a lot of pain shooting down all of my limbs. The pain started with the pain just shooting down my legs and within a short period of time the pain was affecting my arms too. I liked having a separate pain doc because I have moved from doctor to doctor so many times trying to get answers. He has been the one doc I have stuck with through everything. Lyrica and gabapentin didn't work for me so I take opiates and muscle relaxers as needed. I don't have as many shooting pains now as I did last year, but the pain is constant. These days it doesn't take much for the pain to become pretty intense. Day by day I am getting weaker and the pain is increasing too.

Don't even get me started with insurance issues. That has been a great source of frustration for me too. My insurance won't cover Mayo at all and the Mayo Hospital is just a few miles from my house. I had emergency surgery there in 2005 and it was the best hospital experience I have ever had! We do have to be patient for sure. That is a big character flaw that I am working on because patience doesn't come easily to me. Everything takes so long with the medical community. It generally takes a long time to have records transferred, getting tests scheduled, long waits to get appointments and then a long wait in the waiting once you get there.

Please keep me updated about your doctor's appointment. I'll say a prayer for you tonight!

Susie