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Don't Know Where Else To Turn Other Than My Dinet Friends

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Hey guys...

Sorry in advance I know this is noit an upbeat post. I hurt all the time like many of you. I can keep my hr down...but I am still limited by "sick" spells....or tremors that have most of the neurological minds in Orlando still spinning.

I went to Vanderbilt and they really were of no help to me. You I am sure have read my previous posts. My spasms are in my head. But they even scare my neighbors. Everyone who knows me is frightened for me. I must be a great actress. Anyway...if it is in my head get it out. I just want my life back.

I went to Shands. Doctor there said he never heard of spasms like I was describing...my mother with me to vaidate me. One local doctor said he had seen these truncal tremors before but not for about 15 years. So that is what is impairing my walking. Signals getting all confused on my already damaged nerves.

I go to Mayo/Jax on May 5...god I hope it ins't more confusion,

It took years to really get over Guillain Barre. But I was determined and there was a course...and doctors that believed me and validated nerve problems. I thought I would never ever have to be sick again.

I waited to divorce my husband until it was completely unbearable out of fear that I might ever get sick again....and 2 years after the divorce I am here again. Don'tforget I told the selfish boyfrined to hit the trail too...so now I am alone. My kids help me...they are scared. Daughter carries me up the stairs. They put cold compresses on me when I am having a spasm. My son is haing bad dreams and my daughter thru a party when I was in the hospital last time.

I feel so alone. My friends are tired of my illness...my doctors would love to help me but are lost. The friends that still talk to me say "you look great...so glad you are feeling better"....they don't realize all the drugs I am on and that I will have to lay flat and may have a spasm the second I leave them.

I tired of this guys. I am really tired of this. I cant think of anyone else who understand....even a therapist...who by the time I get to her...I have diahrea or tremors.

I am sorry this is not upbeat and positive. I am sad and frustrated and tired today. Two years ago I was getting cerrtified in all these programming langauages getting ready for a promotion. Managing my rentals...kids were doing well...had started a great relationship that was a lot of fun...water skiing etc.. and it has all changed and I want it back...and I am whiing and scared today. And I feel inadequate as a mom...but I want to be a good mom so badly.

So I am throwing this out there. Perhaps a story or two of you all having been there...



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Honey, I've got nothing but support for you. Hang in there as best you can. Other than prayers and understanding, I can't think of anything else.

(((((((((((((((((a truncal stabilizing hug))))))))))))))))))))))))

Hey, what about a back brace? Like the ones they use for scoliosis? Maybe the extra support would ease the muscle burden?

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I am scared too on my own level-feel just as vulnerable as you do.

Just doing simple things like going to the grocery or through the recyclers tightens my chest up to where I can hardly breathe.

Here I wanted to work more? I can't even do simple tasks -what is happening?

And the children thing. I just cry and feel so down because the least little thing stresses me. I end up getting up and doing what I can just because I don't know how long I'll be here and I want to do what I can while I can do it.

You know what so much of this is the mental /emotional/ psychological impact.

We just don't know what our future will be and sometimes what we're feeling at the moment just isn't good.

I get the comments from my children too, that I wish you were never my mommy etc etc.

It hurts and it hurts to think I may not be here to watch them grow up, to see them get married, to see grandchildren.

I think we have to just take one day at a time? And hope for the best.

Maybe somehow miraculously you'll get back to a normal and the spasms will stop.

I know it is frustrating to not know what is wrong but for all the things they tested for that were negative that is really positive.

I just wish for all of us that this was just a very bad nightmare that we could wake up from and I know I am one of the luckier ones that seems somewhat functional but it still doesn't feel right.

I hope there is a way that you can get the emotional support that you need.

I know that this forum isn't meant to be a diary or blog of daily thoughts but I don't know if something like that would help.

I get those same waves that I just want to scream, cry, give up all at the same time and just either have it be over or get better!

I had to think today that we really do take our health for granted.

My mom I guess must have experienced some of these feelings being diabetic with me there as a child never knowing if she might have an insulin reaction with no one else around.

It's difficult to understand that level of vulnerability until you experience something like it yourself.

I am thankful for the years I had that I was healthy and that it's not one of my children with the problem. It has to be even that much worse to watch a child suffer with this problem.

I guess we have to learn to hang on tight to what we do have and be thankful for that and not lose hope.

Hang in there and let us support you however we can.


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One local doctor said he had seen these truncal tremors before but not for about 15 years.

That would of course mean that you couldn't have them because when something is so rare, it can only be seen once by any individual doctor in his whole career. :)

Or maybe it doesn't have to do with the fact that he saw it last 15 years ago. It would appear that you just do not not have that "Je ne sais quoi," that (very elusive) quality that makes a doctor want to diagnose and treat you.

You might ask the doctor what was so special about that other patient that made it okay to say he/she had "truncal tremors" without the belittling reference to when the doctor last saw them ... ;) If he gives you an answer, please write in to the forum to tell us what that patient's great secret was. :blink:

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Guest tearose

Erika, dear one,

Of course you should come here, we are all beside you and do understand your pain and frustration. Whine and complain all you need. Heck, we are here 24/7! No need to dress up or take transportation or worry about needing a bathroom stop or nap.

When things get really challenging I just stop in my tracks. I decide NOT to look back or forward but to live in that moment. With all my fears, frustrations and uncertainty I first accept where I am. Then, I either have a good cry or scream into a pillow. Somewhere in there are my prayers and meditations too. Then, when I am ready, I take one small step forward and try to figure out how to keep steadily moving forward.

We have a little understood dysfunction and it is so much easier to dismiss us as "odd" and move to the next patient. We have to be our own advocate and it does wear us down. Do not be hard on yourself. You are doing the best you can and that is all you can do.

My children grew up with me dealing with so many issues but they tell me now that they are in their 20's that they learned so very many important lessons from observing me. They have learned how to speak up for what is right and true and to be true to themselves. They are fine young men.

My quote to live by is "We cannot control what happens to us, we can only control how we respond". Try to break apart your current trials into smaller segments and decide how to deal with them one by one. You already are doing this. I think Mayo MN is wonderful, I hope the Florida location will be equally excellent. Be sure you have all your documents in order and don't leave until you have asked every question!!! I also recommend you ask on your first day for them to have copied all your records for you to hand carry home on your last day. Be proactive and as positive as possible. We will be here for you if you want to brainstorm while you are there.

Call upon a friend or confidant to help you if you need. Come and share here too. This is a difficult time and we are here for and with you.



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There's no rule saying you always have to upbeat on these forums.

I'm FINALLY starting to recover some from a relapse that lasted.....well, a long time. Just the other day I thought, "Hey, I actually feel like I might be able to move around a bit. Great. Now I get to start all over AGAIN." Can't even be happy about feeling good because I know it's just part of the cycle. And now I get to add my spouse dumping me and pushing me out of my home to my list of 'Reasons to quit trying'. I won't quit, but **** it's hard sometimes to keep going.

You're not the only person suffering, but it sure does seem that way when most of the people around you are healthy and oblivious. Forums like this are a life saver because it reminds us that we're not alone, and that we're not crazy.

Hang in there sweetie.

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Dear Erika,

I am so sorry you are having to deal with all this at the moment, I don't have much constructive help except to say keep posting, folk here have an idea of what you are going through and actually care what you have to say.

On a medical line have you ever seen the:

WE MOVE? Web Site, the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web. (Well that is what they say)!!

I have found it helpful at times, I have a form of multi focal myoclonus and have found some good info on this site, lots of folk with lots of odd goings on, you might find something on there that sounds familiar to you!

Sending you lots of possitive energy,


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I think we can all relate in some ways. Its hard for me as a guy when im sick for years on end and have to take time off work and stuff and after a while its like everyone just expects me to be well and no longer wants to acknowledge that im sick. But thats fine.

its hard primarily because it effects your brain - the organ you use for every function prettymuch - so when its struggling so does your life basically.

If you improved from GB then chances are you will from this eventually. As a guy on tv said recently, sometimes in life youve just got to hold on and pray.

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Oh Sweetie, I don't know what to do other than to say, vent as much as you like here. Heck, I've done my share... and some point soon, I'll likely post a rather lengthy cry-fest here b/c so much is going on my physical and emotional life that my head is spinning (ha, it does that anyway, so that's just plain crazy).

Big, giant warm hugs to you from me. Everyone here "gets" it, even if their individual experiences aren't exactly like yours... many of the same issues apply as far as finding a good doctor, finding a treatment regime that works well (if at all), the effects of being persistently ill on personal relationships, on your outlook on life, yada yada...

Hugs. Nina

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Just wanted you to know we are here for you. Finding the most knowledgable doctor for treating your pots is half the battle, and for me the first year of the pots was the worst. Keep fighting for yourself because often times that is the only one we can really depend on, and of course the dinet web site provides lots of valuable information. Don't give up even when you feel like it, of course in all reality I have "given up " and just had to stay in the bed most of a day or two or three, but evenually I say I am going to try to do something today, even if it seems something small. I keep a journal now which helps me through the bad days, because I can look back and see there were some good ones. Here's sending you some positive vibes! Hope you will soon feel better and have some good days ahead. Don't take the positive vibes the wrong way,meaning it's okay with me for you to vent, I just hope for you. That is something the last physician I saw gave me was hope, when I had not had much before. Maybe with pots we don't "get well" , but better.

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Thanks guys...the last few days have been a little better.

I did make it to see a therapist/friend (remember I am the one with the graduate degree in counseling but I don't seem to be albe to help myself sometimes!!) I sat there and cried and cried. I said I just couldn't gain hold of the last few months. They have just been so bad. Unbelieveable.

My mom is supposed to go to Mayo with me on the 5th of May. She is already saying things like "well..you need to respect what I need emotionally..blba bla bla..." she is amazing. She is so about her. But at the present I don't really have too many other options other than my poor daughter. Who I would love to go with me but I don't want her to be the only one. It is too hard on her.

So I will shut my mouth and pray. :) I am ready to even be "crazy" if that is the fix. i just want the fix.

THanks guys...and love.


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