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Hi From Erika - Remember Me??


erikainorlando

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Hi all,

I have been meaning to write. I have been so busy tho. And Thank God I can be busy!!!

So as most of you know I had so many problems last year. Half dead...went to a "speialist center"....in Nashville which will remain nameless... anywhay was told I had POTS but I already knew this. While on the TTT I started convulsing. The doc said I needed psychiatric help.

My neuro was so mad .... we pushed and went to Mayo who said I had "StiffMan Syndrome". I got plasmapherisis in June/July....all my hr problems went away...digestive track problems gone. Started to feel better than I had in years! I still shake and spasm but not like I was doing. I am on baclofen and valuim - I also did IVIG in Sept.. I probablyt will do plasmapheriss again soon...or I hope. It helped so much!

I can't walk far. But I no longer feel like I am dying!! I am getting my life back! Praise God. I am going to try to work alittle. I don't hurt so much....and I am getting help! So I guess what I am saying is PUSH for that correct diagnosis!! Many many times POTS is the result of another condition. OR related to something underlying.

Those days that I could barely get offf the couch...chest hurt so bad...felt so swful.. are gone. AND they were the worst days of my life. AND most medical professionals didn't even validate me. The best thing that happened to me was that I got so ill unable to walk...crawling...even tho it was so terrible. My poor daughter had to wheel me onto a plane to go to "the BEST place" only to be told I was crazy. I was too sick to be ignored tho...so these docs in FL banned togehter and got me to Mayo...not to the autonomic center...to the regular neurologist. to start fresh and see what was really going on.

Love you all. I am going to a Halloween Party tonite. Last year I went but I could barely get dressed and stayed for aboiut an hour.

Push for yourself. It may not be a great diagnosis...mine really isn't but at least we know what animal we are treating.

Erika

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So good to hear from you, Erika!!!! I'm so happy to hear you're getting better. I think many of us here were so frustrated, afraid, and furious on your behalf when you were unable to find help when you needed it so badly. Enjoy your party :) You deserve it! Drop in every once in a while & let us know how you are.

Big Hugs-

Julie

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Wow, that's great! I've been wondering how your treatments for Stiffman were going. So, that's what it has been all along? And the treatment for Stiffman is the plasmaphoresis and IVIG?

I went to a neuro, but all I had was a little bit of bloodwork, an EEG and a brain MRI. I don't know how to get doctors to dig deeper!

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Hello Erika. I'm so glad that the treatments have made such a difference for you; it must feel incredibly gratifying to be able to do things like go to a part after the year you've had! :)

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I did anesthesia once on someone with Stiffman Syndrome-very rare syndrome indeed. I had a hard time finding any information on the anesthetic implications of your disease. The whole experience was very challenging. Glad to hear your meds are starting to help improve nour life.

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Hi Erika~

I've missed you on the Forum! But I'm so glad to hear that you've finally gotten the correct diagnosis and are feeling better. It's so frustrating because so many of us with POTS never get a diagnosis of the real cause of our illness. Have a great time at your party, and stay in touch.

Cheers!

Jana

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Thanks all for the good thoughts! I just want to add that there is a light at the end of the tunnel and it is not an oncoming train. :)

I am not sure that was my problem all along....something autoimmuneI for sure....not sure they know why..couldn't get my body to work. Definately POTS, but POTS as the result of a central nervous system autoimmune disorder. So little is known about Stiffman. I amnot even sure I have the traditional "Stiffman"...but after 3-5 plasmaphersis treatments...my life changed. Valuim and baclofen also completely changed my life. Baclofen helped me walk and valuim got rid of the horrible feeling I couldn't describe but felt all the time. I have noticed my hr increasing lately...I need more pllasmaphersis in my humble opinion. IVIG didn't really help.

Julie - thank you so much. You all helped so much. Most of you know I was paralyzed and on a vent for months with Guillain Barre...horrific experience but I can't tell you which was worse, that or being so ill and having no help in sight and no one who really took me very seriously. That was a **** like no other!! Most of you know what i am talking about. The support and love I received here was what pulled me thru many times. :D

I even danced at the party!! Then I went in the bedroom, took 10mg of valuim and put it under my tongue to get in my blood stream fast...but I still spasmed for a good 1/2 hour. Bad pain. It is still a challenge but at least we are trying to treat the right thing.

I am not sure how but I want to somehow become an advocate for those with invisable/rare illness. The courage I see on this board is 2nd to none.

I just can't say enough about pushing...it is our bodies and our lives..a gentleman a long time ago said (and I know this is not always the case)...POTS is like saying you have a fever. Why do you have the fever? And I say this knowing full well that there are genetic forms of dysautonomia etc. but when it isn't.............well you know what I mean.

Love to you all.

Erika

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