SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Still in limbo after seeing MS Dr today
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Still in limbo after seeing MS Dr today

Well I'm still in limbo.
He said the large lesion looks like MS but no dx yet. Wait and see approach.  
5 Comments
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Avatar_f_tn
That is blazing fast to get in to see an MS specialist. The one I went to has a two month wait, even for current patients.

At least you have done everything you can for now. One day at a time... :)

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2112931_tn?1335102002
That's why I'm concerned about this doctor. If it was that easy to get in to see him, maybe he's just not that great. He was awful quick and didn't listen. My mom heard he was really nice and helpful. He seemed to brush me off. Idk. Feeling down a bit.

But, I'm going to just keep notes of any possible symptoms and wait for my next MRI.

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956292_tn?1334058469
Hi, I am sorry your appt. was not what you had hoped for. My first nuero kinda blew everything off and said let's wait and see, blah blah blah..

When I went to my second nuero, my current doc, he was amazed that I had not even been given more testing...

My doc says that my MS seems to be stable and at that point he explained the unpedictabilty of this disease. Together we discussed tx.options and came to a conclusion that even though everything is stable right now..we wanted to keep it that way and we started DMD.

I recommend or suggest speaking with your 1st doc and explain about appt. and ask her if she will still do MRI Octobr vs. waiting to see.

My symptoms somewhat come and go and I can somehow mange to deal with them...

I rather know I am doing something to stop it from progressing vs. waiting to see AND then do something about it...

Remember it is your body and you know when something is not right...I regret waiting to go to another doc sooner but am glad I am with the one I am with. notes are good..Maybe you can call your other nuero to talk about this with them and get their opinion on how they feel your appt. went.



Love Jibs
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3101094_tn?1341776616
Hi sorry to hear about your continuing limbo. I know how frustrating it can be to wait....wait....and see. My neuro said the same thing. I did keep a fairly accurate timeline of my symptoms... but the dr shrugged most of them off.

He basically had me thinking it was all in my head and I began to think the same thing.

Last night I fell over in the hall way.....

I did consider myself lucky that I didn't get my DX but now I'm not sure LOL.
I hope you get some answers at you next MRI.

Scott
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2112931_tn?1335102002
Yea, this 2nd opinion MS doc made me feel like my past symptoms were unimportant and not valid.  All he wanted to hear is what was wrong that caused my regular doctor to order the MRI.  After he heard that my migraines was the reason for the MRI, he almost acted like I was wasting his time talking about symptoms that I have had.  

I seriously think he thinks I was making it all up because they saw the lesions.  That is not at all how this is.  But, by them bringing MS to my attention, I was able to make some sense out of the symptoms I have had the past 5 years.  Before this, I had thought I was just clumsy, with migraines, sensitive to pain, Overly tired, heat intolerant, bad circulation in legs to cause them to collapse and go numb, and bad memory. LOL
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