Update In Orlando!

[sue1234]

This is probably dumb, but I'm sure they checked your electrolytes, specifically potassium??? I know there is a rare condition in hyperthyroid cases where they get hypokalemia paralysis--it just makes me think of your body's reaction. Like I said, just thinking out loud(via computer, that is!) .

[MomtoGiuliana]

Hi Erika

Just reading this now and so sorry you are going through this.

There was someone on DINET who used to experience periods of paralysis. She is better now and don't see her here often.

I hope the drs where you are hospitalized have some answers soon.

[Chaos]

Sure hope they can find some answers for you in the next couple of days. Perhaps an acute rehab center would be beneficial, but only if they know what's going on with you, so the therapists can help you and not just exacerbate your symptoms.

You have been so much in my thoughts and prayers since the night you posted that you went into the hospital! Please keep us up to date. Sending you lots of hugs.

[juliegee]

Erika-

YES! I actually thought of this when I first read your post. Check out a condition called pandysautonomia. I did some research for another member recently. It is described as an acute form of dysautonomia with vestiges of Guillain Barre syndrome. She was considering IVIG therapy as a treatment. Here is a copy of one article I found:

http://www.ncbi.nlm.nih.gov/pmc/articles/P...c00005-0099.pdf

I'm sure your doctors will find more recent & pertinent info- just nudge them in the right direction. BTW, you are most definitely not ready for a nursing home. Those docs have not begun to exhaust diagnostic evaluations. Stay strong. We are all pulling for you.

Big Hugs & Mighty Prayers-

Julie

[erikainorlando]

Julie - You are always so full of good info!!

They are going to do a spinal tap on me...soon i think. But do you know if this would show pandysautonomia?

The doctors didn't want to even do a spinal because they said it doesn't look like Guillain Barre onset. I told them there are so many variants of GBS...I am no doc but this is crazy!

Erika

[juliegee]

Julie - You are always so full of good info!!

They are going to do a spinal tap on me...soon i think. But do you know if this would show pandysautonomia?

The doctors didn't want to even do a spinal because they said it doesn't look like Guillain Barre onset. I told them there are so many variants of GBS...I am no doc but this is crazy!

Erika

Erika-

I'm not sure HOW this is DXed, but you have access to a computer. There are hundreds of articles on pandysautonomia out there. Show them to the doc in charge. If s/he isn't a neurologist, ask for a consult with one ASAP.

The more I read about pandysautonomia, the more I feel certain that you need to explore this. We have a new member called PandyGirl in our community. Maybe PM her for better info.

Your docs need to explore THIS.

Hugs-

Julie

[janelle]

Hi Erika

I have pandysautonomia and am exactly like you are discribing, it's just horrible. i have had two sessions of IVIG and I'm not better yet, guessing it takes time but i only have one more dose of treatment next month and then they stop it if it's not working, I've had pandysautonomia for 20 months now.

Hope they find answers and get you feeling better my thoughts are with you. Hugs.

Janellexo

[janelle]

Forgot to mention that a spinal tap is a great idea for knowing whats going on inside you body as it's all important, mine showed increased protein and 2 cells and some other stuff I'm not sure of.

When i had a spinal tap i was hospitalized for 10 days because i reacted badly, i had the autonomic instability worse than i ever had, a feeling in my head i cant describe the pain was excruciating and i have hyper reflexes, extreme weakness and non reactive pupils to light, they did neurological exams on me every two hours even through the night when i was there.

It was worth all the pain though because it wasn't for nothing and i had an abnormality to show so i could get the IVIG Therapy, maybe they will give it to you because you've gotten to hospital early enough, it may work for you, i feel like they are too late for me and it should have been done sooner.

Janelle

[Noreen]

Erika-

Gentle hugs to you. I just read of your latest trial. thank goodness you have a good doctor and a wonderful daughter to chauffeur you.

Attached is an article from Medscape on Autonomic Neuropathy. The spinal tap will show an increase in CFS protein and CFS enolase if it is pandysautonomia.

Sorry I'm too new to figure out how to attach the article. Here is the link. Any problems, post and we'll figure something else out.

http://emedicine.medscape.com/article/1173756-overview

Prayers and love winging your way to envelop you in a cocoon of healing,

Noreen

[erikainorlando]

You just can't imagine....the only neurologist at this hospital says the lumbar puncture is not medically necessary as I don't present with Guillain Barre type symptoms. Even tho I can't walk...or lift my leg off the bed.

So I will try to transfer to another hospital...but NOW my PCP wants me to have a psychological evaluation!! Just to clear up all ends. I keep crying and crying...I wonder if I am crazy. Why can't I get help?

Pandygirl - do you have times where you can't walk etc. ?

Thanks,

Erika

[juliegee]

Oh Erika-

My heart breaks for you & I'm really angry at the same time . You know this is NOT psychological. Do request a visit from a patient advocate before being transferred. Explain your situation. If nothing else, a lumbar puncture is a good idea to rule out GB, and a necessary step in a differential DX of pandysautonomia. I assume your docs are aware that you have previously had GB???

Erika, is there anyone who could help advocate for you? When you are so weak, scared, and debilitated it is hard to give a fair & adequate representation of yourself. I HATE that you are not getting even basic diagnostic care. Shame on your doctors for making you fight for that.

If they won't do a spinal to rule out GB OR consider pandysautonomia, do request a transfer. Make sure that the patient advocate is aware that you plan to sue the hospital (whether you are or not!) for failure to perform a basic diagnostic work-up.

I hope Pandygirl chimes back in, but she did reveal in another post that she uses a wheelchair.

With anything dysautonomia related, docs always suspect it's psychological in nature. If all else fails, consider meeting with a psychologist & explaining your dilemma. Maybe, s/he will end up being the advocate that you so badly need. Keep us posted.

Hugs & Prayers-

Julie

[erikainorlando]

Thank you all so much! Julie - you are so great!

I read an article on pandysautonomia. This is me kids...says starts with the autonomic nervous system and then leads to the otherr peripoheral nerves....which is why I can even rise from the bed today. I have made an appointment with a fellow in Jacksonville who sepcializes in variants of GBS. But this is not until March 18..and I could be on life support by that point again.

Yes, Julie, they know I had GBS (worst recorded case in Orlando at the time) and POTS diagnosed last year. Now wouldn't you think they would put the two together and start seeing something?

I even read about this autonomic variant of GBS on the GBS website forum. Not very common but it is there.

You guys give me the courage to keep fighting. I am so tired of fighting. It would seem that all would want to help and comfort me here and see how they could help the woman who was walking well just one week ago...yet...I am now having to prove I am not crazy. I am afraid to ask for pain meds because they will think I am a faker!

I promise you I will write a book when this is all over. Without all your support I swear I couldn't go on...my kids are scared..I am scared...I hurt and so weak and disability is fighting me....and now I wonder if I am crazy as well!!

After the psych sees me I think my PCP may try to get me to the bigger hospital in Orlando (ORMC) with all the key docs...just a lumbar test ..?? WWow...and I even have insurance...go figure. But they are very ready to send me to rehab...as if that will work to get my strength back...

When I had GBS, it took them almost 3 weeks to diagnosis...I did 19 rounds of plasmapherisis...never helped because we got started so late in the game. I just can't believe all of this...next time I want a well know illness if I have to get anything!!

I love you all...keep praying..I'll post more tomorrow.

Erika

[dsdmom]

Erika,

I'm keeping you in my thoughts. I'm so sorry you are going through all of this. I hope you can get transferred to another hospital and insist on talking to someone who has knowledge of pandysautonomia.

Hang in there.

[janelle]

Hi Erika,

Hang in there and don't doubt yourself, you know what you feel and they are just being ridiculous about it all, no testing and saying you need a psychological assessments, Ha, laughable. You need medical expertise and fast, you know that you feel somethings not right, don't let them tell you how your feeling, stay strong or have someone speak on your behalf if needed for times of slurred speech or fatigue, zone outs you know when.

My first encounter with a neurologist was awful, he suggested i had conversion disorder which my mum sitting beside me( she's a psychologist by the way) knew what he was getting at and demanded politely that tests be done to eliminate any medical possibility's, she knew i was not psychotic, a little depressed (who wouldn't) but no issues like conversion.

Once he saw the results from my tests he said " Well you are sick aren't you and the tests confirmed an abnormality, I'll refer you to the expert on POTS".

I so wanted to shove it in his face but i controlled myself and thought he is already feeling embarrassed, i got him back anyway, no words needed.

After that, i saw a wonderful neuro that i still have now and i think he is brilliant , he used to work at the Mayo in Cleavland but now he's in Australia, lucky me.

I am young only 27, married and I have 4 kids two special needs.

I know when it seems that things can't get worse i learn another way to cope, i fully believe you can too.

As far as mobility goes it's soooo hard.

Was on crutches at fist because they thought it was my pelvic instability/hips dislocating as i walked, i was weak they gave me crutches and a neck brace, then recommended i see a neuro immediately after i couldn't even hold myself up.

Now I have a wheelchair and a newly bought scooter, for the times when my brain is working or close enough LOL it gives me a little bit more freedom, but i always need supervision, I've been found many times unconscious on the floor with the kids locked in the house, but that doesn't happen anymore because i have someone with me always. I can walk now a little around the house from chair to chair and lay on the floor or in bed lots too.

Take things day by day and you'll all get through it easier.

Message me if you want to, I'm happy to answer any questions it's so great to finally find someone that has what i have, it is rare so i believe..

Hang in there

Pandygirl xxx

[iheartcats]

That is so frustrating they want to call in a Psych evaluation! How irritating! I feel for you. It's really irrelevant to what you are dealing with right now.

Hang in there and stick to your beliefs. You know there is something physically wrong. Get an advocate like Julie says, if you can. I hope you get transferred to the other hospital ASAP!

[juliegee]

How are you, Erika? Any news. We're all pulling for you.

Keep us posted when you can.

Hugs-

Julie

[potsgirl]

Dear Erika,

I am almost to the point where I can't walk. My legs and arms have become extremely weak, and the first hour of the morning I have to be helped down the stairs, have my coffee carried to my recliner, and then I don't move for at least an hour. I usually feel a little better for a couple of hours in the morning, and then it comes back and I feel horrible. Do you have pain/numbness in your legs or one side of your body? My left side is slower and very numb. It feels like I'm going to have to start dragging my left leg soon.

This hit suddenly about 2-3 weeks ago....when did yours start? I'm glad your brain scan didn't show abnormalities. I just sent a DVD of my scan to my neurologist up at Mayo. Now it's just waiting to see what they think it is....

Sending you all of my positive energy and you're in my prayers,

Cheers~

Jana

[arizona girl]

Jana and Erika, you are both in my prayers and I will ask the women in my bible study to pray for you today. I don't know what your belief systems are but prayer of any kind couldn't hurt.

I hope you both find out soon what is wrong.

Erika, I don't think you need a psych evaluation, I believe you can refuse to have one, frankly under the circumstances they are ordering, I would be suspicious of any psych diagnosis they might conveniently come to. You don't need a questionable psych evaluation in your medical record. I too believe this sounds like some kind of rapid onset neuropathy. Have they done a skin biopsy on you yet to see if you have small fiber neuropathy. Considering your history, I think it is medical malpractice not to do another spinal tap on you. I agree with the others don't let them ship you off to a rehab center until you know what is wrong. A patient advocate in the hospital is a really good idea. If you can bring in someone not connected to the hospital you are in, maybe this doctor who thinks things don't need to be done, can be challenged. It's time to make as big a stink as you can muster up. Or get yourself the **** out of that hospital to another one. You are not crazy!!! Big hug!!!!

[erikainorlando]

Everything is so weak. My nerve damamge was really started back in 2001 with the GBS..so I always display some abnormalties in an EMG. But numbness and tingling and proufound weakness is what I have found.

I have been moved to ORMC in orlando with a great neurologist. But he dioesn't really understand POTS symptoms. But I think he is still trying. He did a spinal tap and said immediately it wasn't Guillain Barre...now I have him looking at pandysatuonomia. I could careless what it is just fix it.!

Last nite was the worst....I feel like my body is shutting down. So weak. I woke up at 1:30 am with a horrible sensation...I get these often but that was the worst. Swalloiwing was hard and breathing was labored. Then my body went into spasms. I was shaking unconrollably. I called for the doctor...they kept saying i was anxious. I told them I was anxious but i could stop; the spasms and regain strength I would be more than happy to be less anxioius.

Finally they drugged me up with Ativan so it would knock me out.........

I was frightened that I called my mom (who said she wouldn't drive at nite) andall my ex-husband ((who says he loves me but told me just to go to sleep last niute). So non of that helped. I was thinking "I am going to die alone in the hospital so they can rest).................

I get so weak even my vocal chords don't work after about 4 minutes use...so I sound like a whipser the time.....

All I know i that I am very sick and would love someone to be able to help!!

Thsnk

[sue1234]

I am so sorry you don't have any support. If only one of us lived nearby and could walk/function enough to help you! I know it's not much help, but know we are all thinking of you today and collectively sending all the positive energy we can!

Have they done a CT/MRI of your neck to see if there is any kind of spinal issue there? With everything just not working correctly, sounds possible to be nerve/spinal cord related. But, you have a neurologist, so I'm sure he's thinking of that. Just thinking out loud again.

I also keep thinking of electrolytes. Have they checked your calcium? Look up hypocalcemia and you'll find alot of the symptoms you are having, especially seizures, weakness, tetany(which affects the swallowing and breathing muscles).

[lieze]

You can bet if we were close we would be there with you holding your hand so you were not alone in this. I know how awful it is and how it's so hard to get anyone to listen to what you're feeling.

Is there clergy in the hospital? They might get involved and advocate for you. Let them know how alone you feel and frightened. There should be someone there or at least on call 24 hrs per day.

If I knew the number of the hospital I would call myself and see if we couldn't get something initiated for you. There is no reason for you to be alone right now.

lieze

[lieze]

Erika I just called and spoke with the chaplain at your hospital.

They are willing to stop in and see you if you could let me know your room number I would be happy to call back.

I told them your story and they are just waiting for my call.

lieze

[juliegee]

(((((((((Erika)))))))))

So good to hear it's not a return of GBS! Your renewed weakness could very well be a result of the lumbar puncture. They are hard on everyone, but with your CNS issues...it's bound to be worse.

Your neurologist has not begun to rule out pandysautonomia. I hope he will continue to look for an answer. I know you have an appt. with a specialist on 3/18, who is equipped to DX you with that (or whatever you are dealing with.) Could this neurologist consult with that doctor NOW. That may get you some answers sooner.

Try not to be anxious. You are in the best and safest place for now. I know your vitals are being watched and help is very close by. I wish I could sit with you myself. I'd do my best to distract you & try to make you laugh . And, then I'd give your new neurologist a pep talk to spur him on to keep searching for answers on your behalf.

Visit with clergy if you get a chance. I am always so touched when someone from my church stops by to visit or give me communion when I'm hospitalized. (So unexpected, but so helpful when you feel defenseless and scared.) No matter what denomination you are (or aren't) prayers never hurt and often help- scientific proof of that!

My prayers and hugs still coming-

Julie

[babettess]

Erica,

I am so glad you gave us an update. I have been wondering how you are doing. Just a thought- have they tested you for Myasthenia Gravis? It causes weakness like you are experiencing.

Hang in there! If you get scared again remember we are all cheering you on to get well soon. Come on here and post and I'm sure if any of us are around we will keep you company.

Babette

[dsdmom]

Erika

I'm so glad you have been moved but it sounds like you still need someone advocating for you. It is so hard to do it yourself when you are the patient. Can you request to see a patient advocate and see if they will help? And do you have a pcp or no? I'm guessign no since not many of us have good ones....but if you do, can they get involved?

I wish I were down there so that I could help out.

You are in my thoughts....keep us updated.