17 months in limbo update

[aspen2]

No question, just updating anyone who might be interested (in particular others who are treading water in the limbo-pool.)  And yes, I'm still in limbo lol.

http://www.medhelp.org/user_journals/show/1112081/10-month-follow-up-appointment-with-ms-neuro-good-appt--still-in-limbo

Be strong, all of you :).

[Maracamama]

Limbo is not a fun place to be is it!  I've been here for four years now (although my low thyroid at the beginning slowed the progress).

The good thing is that they are still trying to figure you out.  Unfortunately, I've never heard of the test you mentioned so I have no tips for you.

I recently had an appointment with a new neurologist since my last one seemed to run out of steam.  I left this appointment confused and disappointed.  The doctor informed me that he knew what was wrong with me.  He told me that I had fibromyalgia but that he couldn't diagnose me with that because I don't fit the criteria (no pain or other main symptoms for this disease).  So then he decides that I have chronic fatigue syndrome but can't diagnose me with that either since I also don't fit that criteria (missing lots of these symptoms).  Then he decides that my condition falls in between these two with some non existent disease and gives me a medication for myasthenia gravis even though I also don't have that.  The medication has had no effect on my symptoms and may be making things worse.

Doctors can be so frustrating.

I hope you have better luck than I have and get someone to diagnose you soon.

Laura

[HVAC]

He sounds like a typical Neurologist. I have to ask mine to explain what he is thinking. I have seen a dozen of them they like to follow people over years. They do not commit to MS until they are sure. Most Neurologists do not say much. They are cerebral, no pun intended doctors. Mine all said I would be diagnosed with MS in the future from my first MRI (none of of other 6 have shown changes and I have MS). I have not heard of that test.

Alex

[Lulu54]

you've sure been soaking in that pool for some time, now.  I hope you can get out of it soon.  Your question about the EMg sent me looking  - here's a pretty good although scientific explanation of a bunch of the EMG variations -

http://neuromuscular.wustl.edu/mtime/mgdx.html

I hope someone in the scheduling department figures this out before next year- you've waited much too long for this next test.

Laura

[aspen2]

Thanks for the website link, Laura.  That is excellent (and not too scientific, really).  The last test still has me stymied .. the  voltage-gated potassium channel antibody test,

Was just looking at neuro's last report; realized he actually wrote he didn't agree with radiologist's assessment of meeting McDonald criteria because although I met dessimation in space, he did not feel I met dessimation in time.  Hmmmmm. (although he also said lesions too small).

And I still haven't heard anything about any of the tests ... I am not surprised lol.

[aspen2]

Four years.  I'm so sorry.

I wish my neuro was more communicative, however it would be very frustrating to have a neuro being wishy washy like that as well.  Guess I'll just try to be patient.

Laura, you deserve answers even sooner than I do .. hope something changes for you soon!!!

[aspen2]

I find it interesting that your mris have not shown changes yet you still have a dx, Alex.  I hear so often on boards that folks don't get a dx because the mri stays stable.

And ... they are cerebral.  Snicker :) :) :).

Thanks for the laugh!  Mine certainly is.

Be well, Alex!