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BUT... This is something that I haven't seen anywhere. Yes, there are the textbook answers on NMSS, but it made me feel better to know that you all are out there and can identify with all of this.
I can talk to my husband, my best girlfriend, etc. but they dont really "get it" when it comes to how things like this make me feel... You know, guilty. Guilty because neither me nor my husband signed up for all of this and there are things that I wish were still the same... sex, energy, not feeling dizzy, being able to walk normal when I get up from sitting or sleeping, being able to remember things for more that a moment or two, not having to have Bob finish my sentences for me (though I have to say he does speak Pam fluently!), etc.
He does so much for me I feel like I should want to do this for him, for me, for US. I dont want itimate moments to feel like a chore. I try not to let Bob know that I feel that it's a chore, but I feel it. And that, my friends, sucks!
Thanks everyone for listening. I needed to get that out.
PamView Thread

Thanks for giving me some much needed perspective on this subject! I do have to say that it did surprise me. If you don't mind me asking, did it take your wife long to understand and accept this? It took my husband quite a while, but he does understand that I often just am not up to it.
Smilin' Bob's meds aren't bad, just the stupid Bob and his dumb a** wife!
PamView Thread

The best knews is that since being on Tysabri there have been NO NEW LESIONS! And some of the previous one had SHRUNK! When I asked why I still have the same symptoms she explained that I had many, many leasions all over my brain. And that we may never get all of the symptoms to go away, but together we would do our darnedest to get rid of them!
Hang in there kiddo! It will get better for you!!!
PamView Thread

PamView Thread

It is nice to meet you and I hope we have an opportunity to talk more!
Best wishes for a great day,
PamView Thread

A couple of things... contact Tysabri and let them know about your financial situation, they can provide discounts and at times will eliminate the bill totally.
Contact ALL of your other medical people, they usually work out a reasonable fee for services at reduced prices. Or they create a payment plan that you can afford. Their thoughts are that they would rather take a million little payments than not ever be paid.
Lastly... I have a book that is written by an MS dr that outlines and explains everything from symptoms, medications, therapy, employment, insurance, and life planning. It is straight forward and is a life saver for me when I have questions. The book is:
Multiple Sclerisis
the questions you have
the answers you need
by Rosalind C. Lakb, Ph.D., Editor
Published by Demos Vermande
Specifically it has LOTS of information about insurances (including COBRA, Medicare, public assistance, and private insurance companies) and employment/employee rights.
I hope that the book helps and that you find the way that is best for you!!
PamView Thread

Trust me, I had a sucky neurologist at first due to being hospitalized and diagnosed with MS. It didn't take me long to find my current Dr. that runs an MS center here in St. Louis. She is the best and I wouldn't be where I am today without her!
In short... YES! DEFINATELY! RIGHT AWAY! SEARCH UNTIL YOU FIND SOMEONE WHO WORKS WITH YOU. Try contacting the local hospitals and ask if they have an MS center.
Best wishs for you!
PamView Thread
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