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A Little Better In Orlando!!


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Well...didn't want to jinx anything so I have stayed away until we have more of this narrowed down but I made it to Mayo....in Jax. Thank God because I think otherwise they may have just focused on the autonomic dysfunction.

They were so wonderful. Their team seemed convinced that I have Stiff Person Syndrome. Vary rare autoimmune related illness...but almost always goes hand in hand with autoimmune. We did 11 treatments of plasmapherisis....and they put me on valuim for the muscle spasms along with baclofen. My hr is almost normal. I feel soo much better. I have to watch it....I am not sure if POTS was the beginning of SPS or a s ymptom and then of course someone mentioned that there is a verrsion of SPS that involves the autonomic nervous system. I thinkn it is called SPS-Cer.

I am doing so much better. I could cry....how much joy to be able to stand up!! I am back sliding a little since the plasma exchange....doctor says we will give it another month and then perhaps do another round. Maybe IVIG but I did that with Guillain Barre and it did nothing for me.

I get very tired and I spasm with too much activity...but we are getting a handle on this bit by bit. I will take spasms overr having to lay flat anyday of the week....I don't have all the answers yet. But the Mayo doc said "you are tis autoimmune person just hanging out there....let's get you help!!" Praise God. My neurologist says he has only seen about 5 cases in his whole career and 3 were when he was at Mayo. He is so funny...he says "your immune system is not your friend".

I am not fixed...but I am better....way better....and when I was doing the plasma exchange I was starting to garden again!! Life is so precious. I am so superstitous about this....that is why I have just kept my progress to myself. Last year was the worst eyar of my life. Ever...even paast the Guillain Barre on life support. Because being sick, looking well, and having no real medical support just sucked...sorry no other way to say it.

I love you guys. I hope this finds you well.

Erika

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Oh my gosh Erika! I JUST watched an episode of "Mystery Diagnosis" that had a woman with Stiff Person Syndrome! She was treated with muscle relaxers.

So glad that you are getting some answers and hopefully some much needed relief. :P

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Welcome back and so glad you are doing better! I was just saying on a post last week that we haven't seen you or a few other members around here in a while. I was wondering how your problem was going.

So, do you think these treatments are taking care of your POTS, also?? Or just your shaking problem from the SPS.

How did you end up at Mayo-Jax?

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Wow... glad you made it to Mayo, and even more glad that you had treatment that got you feeling a bit better. Now, let's hope they get stable for the long term. Sorry your immune system is being such a beast :) I just posted a quote on my facebook page this morning that I think is appropriate to share with you today.

‎"I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me." ~Thomas Merton

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ERICKA!!!!!!

SO glad to hear that you are FINALLY getting the help you've needed for so long! What a long and arduous journey you've been on this past year. All the hassles of persevering when even the docs at the "best" autonomic places weren't recognizing your situation. Yeesh!

Have been thinking of you a lot and wondering why we weren't hearing from you. What a relief to know that it's because you seem to be getting better. I sure hope it continues!

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Ericka! I am so so so glad to hear that you are doing better. I know you are not healed but am thankful that you finally found docs to take care of you. I hope you continue to experience improved health!!!!!

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Erika~

It's so great to hear from you again. I'm so glad that you got to the Jax Clinic and found some good doctors. I hope you only get better and better! Keep in touch and let us know how you're progressing. Woooooo-Whoooo!

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Mystery Diagnosis had Stiff Person/Stiff Man Syndrome on their show this week.

Nina

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Wow. I would have loved to have seen that Mystery Diagnosis. You know it just makes me wonder...when I tested positive for POTS no one went any further. It is just weird...POTS is a secondary illness many times. Remember when I went to the "wonderful autonomic specialists" whom I waited 7 months to see and see thought I was crazy?! She said oh, yeah you have POTS...but the fact that you can't walk or stand ...well that is not autonomic and therefore it is psychogenic.

I think we have gotten so specialized in medicine sometimes that it really hurts us.

My heart rate still can get a little high (during the treatments my hr was in the 70's daily but now I think I am backsliding a little) but many many of the autonomic problems have improved with the plasmaphersis. Which then again makes me wonder why they don't suggest that for more autoimmune pots patients. It gave me my life back. I will probably need more..or IVIG..but I feel supported now. The wonderful team at Mayo said ....we know you have probably heard this is in your head...but it isn't...and we know it isn't...a week later they called back personally and told me they thought it was SPS and what trreatments they were recommending. Praise God.

I still can't walk far....and need to rest...I hurt...but believe me it is so much better.

They just really don't know what happened with me...was POTS a symptom or the start of bigger problems. But I will keep in touch....I feel so lucky that my symptoms got sooo bad that someone had to step in and say....hey let's do something. :P

Erika

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They mentioned during the segment that those who have type I diabetes are, for some reason, much more likely to develop the syndrome. Interesting. Perhaps you can watch it online either via the website

http://health.discovery.com/tv/mystery-diagnosis/

or Hulu.

Nina

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Hallelujah!!!

It's so good to hear from you, Erika! You've remained in my thoughts and prayers. How wonderful that you're finally getting help. Your plight (and the subsequent way you you treated) broke all of our hearts.

Continued prayers for your continued recovery-

Julie

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PRAISE THE LORD!!!!!!

KEEP THE FAITH.....

<3 U ERIKA.

I KNEW U WOULD REAPPEAR STRONGER AND BETTER.

Bellamia

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Oh erika, we knew you weren't crazy and we were appalled with what those doctors did to you. I'm so glad you found one that knew how to look at you as a zebra not a horse. I've see enough to know that at lot of doctors don't look outside their box of training and because they can't figure it out think you have anxiety or something, that is such a disservice to their patients.

I agree with you that in many cases pots is secondary, I don't know why more doctors are not looking closer at autoimmune causes. I don't think pots is one of those conditions that is truly idopathic, I think if we look deeper we will find that something is off with one our body systems. Dinet has done such a good job of listing what those mechanisms and causes could be. We just have to keep pushing till we are satisfied that we've found our missing piece of the puzzle.

I just finished 3 months of pheresis @ 2 xs a week. If yours is autoimmune it's pulling those autoantibodies out of your blood, your body is still making them so once you stop they will build up again. So, if your symptoms come back that means it was working and you may need to continue. There was a lady with me who has CIPD Chronic Inflammatory Demyelinating Polyneuropathy, she has been doing pheresis for 18 years. I thought that might be something your symptoms pointed to as well. You need to watch you hemoglobin and iron levels with pheresis. The pheresis did help me! Now I go on to IVIG, due to low quantitative immunglobulins.

You know IVIG is the primary treatment for Guillain Barre, you did recover from that, maybe the IVIG did work for you. Maybe you needed maintenance doses to keep these newer symptoms from happening. It can take a few months to know if it's working. I think once you've had Guillain Barre you are succeptible to developing other immune problems. That is why I'm shocked that that doctor didn't dig deeper instead of deciding you were a head case. I'd file a complaint with your medical board about her, now that she has been proven wrong. If she did this to you she will do it to another patient.

It sounds like you are finally in good hands, I'm so happy for you!

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WOW!!!! I'm SO happy for you! What a relief to finally have an ANSWER, and a TREATMENT, and doctors who SUPPORT you. Please keep us informed. I certainly agree with you that many docs just accept POTS as the sole cause for our wacky symptoms, and do so mistakenly. I like your comment about how doc's specializing can actually hurt patients. It seems they put blinders on when it comes to any symptom that falls outside of their specialty sometimes.

I'm so glad you are gaining some function. What a blessing. Thank you for persevering!

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You are all so wonderful. Kept me alive when I had no hope. I am visiting family in Naples, FL....where we always vacationed when I was a kid. The water is so calm I can walk in and float....and watch the dolphins. The heat doesn't bother me like last summer. The plasma exchange worked so well. The tech administering it remembered me from 2001 when I had GBS!! :lol: Sort of scary...was I a difficult patient??

It is amazing what they can figure out when they really try....I may be doing IVIG next as well. Why, for those of us who clearly are have an autoimmune reaction do they not do these therapies as a matter of course? Is it that they themselves are dangerous? I don't know if Stiff Person Syndrome was the cause of the POTS or just an add on....and of course the meds for SPS really help me feel better....just like how thrilled I was after they realized my hr was close to 200 and put me on toprol...

but the body needs user friendly anti-bodies...just wondering...why it isn't standard?

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