[bobcatsrule]

HI all,

Well i did it! I am going tommrow (actually given that this is almost 3 am it is this morning) for a second opinion!

I am so tired of this limbo thing and I am going to an MS specialist to see if this is real or if i just need psychotherapy really bad!

i have attached a document that has my "QUESTIONS" for my new neuro.

I hope posting these questions will do two things

1) generate discussion between people and their doctors (there is no such thing as a "stupid" question) and

2) generate discussion on this form that might help others who are in my shoes and do not have a firm dx come out and have a safe place to talk about their experiences!

And yes bgb, tante, and bird and others the questions are NOT one long paragraph! they are broken down into mini-paragraphs!

I am so tired of limbo land and I am determined to break free or be dx as crazy trying!

PS if the new neuro feels it is needed, the MSAA has agreed to pay for my first diagnostic MRI! Yeah!!!!

I had a clean MRI 6 years ago but a LOT has changed since then and i am looking forward (in a weird way) to getting an MRI b/c it will provide answers! (one way or the other ) and if that doesn't provide a conclusive answer then maybe further testing will!

to all Bird, tante, greenjeans, snoopy, sally C, and cricket 52 and many others who have made my time here in Limbo Land bearable!

i am hoping to break free soon from Limbo Land and either into the land of a dx or the psych ward!

I don't know sometimes i think the psych ward would be a change up from Limbo Land!

this appointment will be very expensive w/o insurance (as I resigned due to health reasons from my job that had insurance due to this disease (weather it be mental or physical)!

wish me luck b/c this is a leap of faith off the niagra falls!

thanks again to all for the support!

My original post with all the sx and goodies that I am going through right now is linked here: http://neurotalk.psychcentral.com/thread40688.html

[Twinkletoes]

Keeping my fingers crossed for you, Rachael. Good luck!

[Koala77]

Originally Posted by Twinkletoes

Keeping my fingers crossed for you, Rachael. Good luck!

I too wish you luck. I have an idea of how hard it is to get off that island, and I agree that the only silly question you might have is the one you don't ask.

BTW.... I've read your list, and I think you deserve major hugs for putting up with all that this long!

Good luck. I hope you finally get a diagnosis of some kind.

[Nevada Leftie]

Good Luck! I hope you get some answers.

[HSPCraig]

I can't wait for Episode 2 of this adventure................

[bobcatsrule]

I have been to see the new neuro and I'm really glad that i did! preliminary exam suggests that I do not have blethrospasms - at least not in the traditional sense! (the forced closure of the eye lids). and they are HOPING to rule OUT MS!!!!!! i sure hope that is the case!!!!!

i do have some balance issues and some muscle weakness (the perception of muscle weakness probably comes - i'm guessing here- but it probably comes from the balance issues which may come from the doubble vision).

we still at this very moment are no closer to figuring out why i have the doubble vision, /(why my eyes fatigue so easily) but it is with about 80% certainty not the traditional blethrospasms.

the new neuro is going to order an MRI just to be sure it is not some sort of leasions in the brain that could account for the doubble vision. but she is fairly confident that the MRI will come back normal. i would be sooooooooo happy if it did!

I am still in limbo land but at least i don't have to go on valium or clonopon.

interestingly there is no spasticity in my muscles when i am off of the mestinon so that may very well be part of my problem (the mestinon that is).

i wish i had an definite answer but I am willing to wait if that is what it takes to get the CORRECT answer!

Thanks and s to all who have shown me so much caring and support!

[tkrik]

Well, I'm coming in to this late but I hope all goes well for you today and that you get some answers to your questions.

Additionally, have you applied for health care assistance with your state? This may be helpful as you will not have the added stress of paying for everything. It helped me tremendously and I am forever thankful that I applied for it.

Let us know the outcome of your visit. Wishing you luck!

~~~Never mind that last statement. I see you posted while I was typing. LOL. I think your attitude about waiting and getting the RIGHT answers is awesome. So many of us want to rush in to a diagnosis that may not be the correct diagnosis. I too am like you, I would rather them be 100% correct before I start injecting myself everyday or use the interferons.

[bobcatsrule]

Originally Posted by tkrik

~~~Never mind that last statement. I see you posted while I was typing. LOL. I think your attitude about waiting and getting the RIGHT answers is awesome. So many of us want to rush in to a diagnosis that may not be the correct diagnosis. I too am like you, I would rather them be 100% correct before I start injecting myself everyday or use the interferons.

Thanks for the for the encouragement. I have a small confession to make though. I have had to learn the hard way about rushing into a dx. that is what happened with the myasthenia. I freaked out when they mentioned the word MG and the dx ended up being the wrong dx and i am paying for that dearly now (fortunately though the effects of the symptomatic drug that i was on will not permantently harm me!) But withdrawl is a (look up in the speech bubble to see my thoughts

I wanted answers so bad, for why i felt so weird, that i found out about the disease and then was so in tune to my body that the little things seemed like bigger things than they actually were and then it went from there and was dx (incorrectly) with MG.

I was determined not to have that attitude again when i was going through all this. and that is part of the reason that i got a 2nd opinion. I wanted a chance to start over with a new neuro that wouldn't have preconcieved ideas about me so that we could get to the bottom of the doubble vision issue so that i could go on with life!

I am hoping so much that the origional neruo was right about the fact that i'm going through a lot of withdrawl symptoms from the drug that i was on (at such high doses) for the disease i didn't have and that once this is all over with (I get off of the drug) then things will start to return to normal. NORMAL!!! WHAT IS THAT?????

[tkrik]

Is there something that they can give you to counter the effects of the withdrawals? It would be interesting to see what would happen.

You story is great for many who rush for a diagnosis. You were wrongly diagnosed and put on medications that was actually doing no good and maybe more harm. Thank you for sharing that with all of us.

[bobcatsrule]

Originally Posted by tkrik

Is there something that they can give you to counter the effects of the withdrawals? It would be interesting to see what would happen.

You story is great for many who rush for a diagnosis. You were wrongly diagnosed and put on medications that was actually doing no good and maybe more harm. Thank you for sharing that with all of us.

You are very welcome! There is an antidote for the medicine that i was given but it would not be applicable for my situation.

the current theory about my body is that b/c of the mode of action of the med that i was on, it down regulated (reduced the number of receptors) that i had for a certain key neuro transmitter. well that, when you suddenly increase the need for said receptor that is no longer there, then you have created muscle weakness! it just will take time for my body to re-regulate and create more of those receptors now that the demand is up for them!

BAM!!! the symptoms that I'm having now (from a med i didn't need for a disease i did not have) could easily be explained by the withdrawl from a medicine that i didn't need but that dramaticly affected my body.

I am just so grateful that I was able to remain solely on the medicine that was just for symptoms and didn't get into the DMDs for Myasthenia!!! That would have been really bad!!!!

I have learned a valuable lesson from all of this. Don't jump to conclusions about your health, it will come back to bite you!

Let the doctors do their job and don't try to do it for them!

I am hoping that i don't have MS and that it was just the medicine i was on for MG and that once i get off of that medicine then i will be ok and can continue on with the rest of my life a wiser and more medically cautious person!

thanks for all those who have been following me.