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Posted 7/10/2007 1:56 PM (GMT 0)
Hi All, I know it's been a while since I posted but I just came home from the hospital yest. after 10 days.  I was seriously ill and the doctor says I still am.  They think my nerves in my intestine are not functioning and so the muscles don't contract as needed. I am on home TPN and nothing by mouth except the occasional hard candy.  I am quite frustrated with all this. I never would have thought I would ever be this ill. They are trying to get a trial of a gastric pacer approved, the gi doc thinks it will help.  Please pray I can get over this with no more hospital stays, I cannot handle another one mentally or physically.   I am going to attempt to make it to my new neuro appt. today, if I don't it will be Oct. before they can get me in.  I need him to nkow I have been off the Avonex for a month and can't take it until all this other is resolved.  I am more weak and my legs are like mush.  Also, my sense of smell is off....everything smells terrible and it's one particular smell. Any one else had that?   I'll try to let you know how it goes. Thanks for all your thoughts and prayers.
Posted 7/10/2007 3:20 PM (GMT 0)
Michelle!!!

O GOSH i'm so glad to see u here!!! I know u'r soo sic and just not able to be here much, but i'm so happy that u were able to update us and let us know how u'r doing. Sounds like u'r having so much to deal with...and nothing appears to be getting resolved. I do hope and pray the pacer gets approved and will help. U know i'm praying for u always and hoping all this will be resolved for u very soon and with NO more hosp stays!! Please do let us know when u can how the appt goes. Let me know if u need me...i will always be here to help. Hold on...just a little more...and u'll get thru this friend
Posted 7/10/2007 5:21 PM (GMT 0)

Michelle,

 

Wow, you have been through such a lot. I am so, so sorry that you are still having such a rough time, and hope that this will get resolved quickly. We haven’t had much of a chance to interact on the board, but know that I think of you often and wish you the best!

 

Sunny

Posted 7/10/2007 9:18 PM (GMT 0)
I went to my new neuro appt.  He was very thorough and nice.  He feels I have a multitude of autoimmune diseases and wouldn't be surprised if another popped in!  He seems to be thinking the intestinal problem I'm having right now is another autoimmune disease that they can't put a finger on.    He told me no MS drugs until this is settled and he may leave me off for a while after that.  He does think I have lesions in my cervical spine that aren't being seen because of the titanium plate I have in there.   He told me to come back in 3 mos. but if i have any new or worstening problems to call him.   I feel better having him know what is going on.   Thanks again for all your support.
Posted 7/10/2007 11:05 PM (GMT 0)
Hi Michelle,

 

   I wish you felt better, but it's good to see you at home now.  I'm glad you got into see that new neuro, might be a good thing to get some fresh perspectives with all this.  My thoughts and prayers are always with you, and please keep letting us know how you are.  I can't comment on the smell thing but I was just reading an article about altered sense of taste and smell in MS because hubby's sense of taste has gone a bit bonkers.  Anyway you might find it interesting.  Please try to keep your spirits up and hang in there, lots of love.

 

http://findarticles.com/p/articles/mi_qa3939/is_199908/ai_n8858258

Posted 7/11/2007 12:23 AM (GMT 0)
WOW MICHELLE!!

That's just what i've been wondering about! Surely other things must be going on for u to be having so much trouble. I'm so glad u got to see this new doc today and that he's aware of everything! Did he have any idea what the other autoimmune prob with u'r intestines could be? That's really interesting. What about the pacer...does he feel t's a good move to make? Take such good and gentle care my friend and know my prayers and thoughts are with u always.
Posted 7/11/2007 1:48 AM (GMT 0)
I'm so sorry you're struggling so, with this! I hope the new neuro finds out what's going on with you.
Posted 7/11/2007 2:34 AM (GMT 0)
Michelle, thanks for updating us... I wish it was good news, but I'm glad you're home and made it to see the new neuro.  Hopefully he'll help straighten out this nightmare and get you headed in the right direction.

Take care,

Shar

Posted 7/12/2007 4:12 PM (GMT 0)
My prayers are with you Michelle.
Posted 7/12/2007 7:18 PM (GMT 0)
Thanks all. My neuro called yest. and wanted me to have some labs for some antibody. His nurse said he had been re-reading my chart (imagine that, they actually read them!) and felt I needed to have this done. She said it was in regards to my intestinal stuff but when I got to the lab this morning I wrote it down. Anti nicotonic acetylcholine receptor antibodies, thye have to do with myasthenia gravis. I certainly hope I don't have it, too. I couldn't find anything related to GI stuff. My sense of smell is getting better, certain smells still come across as awful but for the most part it is better. So far no severe abd. pain. but I haven't eaten or drank anything. I accidentally swallowed some water while taking my klonopin and boy, it was glorious!!! Please continue to pray that there are no more hospital stays and they figure all this out. Thanks! Uppity, it is good to see you. Were you on vacation?
Posted 7/12/2007 9:27 PM (GMT 0)
Hey Michelle!!

Wow...u'r doc is already doing a great job! Seems he is on the ball to finding some answers for u and pinpointing the underlying probs going on. I hope and pray it's not this Myasthenia Gravis. I did some research on it and i can see how it'd be easy to miss with the other stuff going on already tho.

I'm glad u'r sense of smell is improving. Could it have been somehow due to the meds or amt of meds u've been on?? I'm not sure how much that could play into u'r senses, but seems like it's a possibility. I hope that continues to get better. Geez...i know the drink of water was sooo good to u!! No idea of how long u'll have to stay on the tpn yet? I hope it's not too much longer, but maybe for now at least, the trade off of the pain level is worth this. U know my prayers stay with u always and in all things. Hang in there and keep u'r chin up...u'r going to get thru all this.

By the way...i LOVE u'r quote at the bottom!! It's perfect!!
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