Now to wait 6+ weeks

[Evidence]

Hi, limbo and new people.

I am most definitely in limbo. I don't know how some of you do it.

I originally went in due to -extreme- fatigue, that would come and go drastically. I could not figure out a reason why I would suddenly get so weak and tired for chunks of time (20 minutes? 2 hours?), and then feel much better. And, I would have sharp, quick pains in random places that flash for a second, and pins and needles that would hurt so much I would want to cry. I kept trying to shrug it off, until finally, the exhaustion felt like I had the flu for an entire day, but I had no other fever/cough, so I broke down and went in.

It's been a couple of months of testing and appointments now.

All the while, other things that I kept shrugging off got worse. My husband would ask me if I even felt how bad my twitching was... I didn't. Now, sometimes my hands twitch and shake so bad I can't write or type, or my feet jerk so bad, I can't sleep. Sometimes food gets caught in my throat. I'm not "choking", because I can breathe, but something is caught, and I can't eat/drink until I cough it out of the way.

My doctor ran many basic tests, hoping to it would be something simple. Tests that were fine: thyroid, sid-rate, CRP, anemia... so she started doing more.

I think it all got more serious to me when she did my reflex testing. Most of my reflexes, especially on my left side, are diminished or almost completely gone. And the Babinski's was positive (is that how you say it), on my left.

She told me to go down to radiology and get and MRI done as soon as I left her office. I tried to do what she said, but when I got to radiology, they were angry. Apparently my doctor is newer to the hospital, and did not know the "protocol". I was told to call in Monday (it was Tuesday), and make an appointment then. When I called Monday, they informed me that the appointments were booked through the NEXT month (nor even the current month), and if I called in a few weeks, I may be able to get an MRI the month after that. At this point, I will apparently be considered lucky if I get my MRI 6 weeks from the date of my last appointment. My doctor is LIVID, but hasn't been able to find a solution yet (military insurance). At least she is trying.

I guess that will give plenty of time for the Lyme and Acetylcholine Ab tests to get processed.

I just... have no idea how to take the next 6 weeks.

[aspen]

Evidence .. it's so hard. The diagnostic process for me has definitely been a case of hurry up and wait, and it is frustrating. My first major flare of something was just over a year ago.

With respect to the MRI, it is usually possible to contact the clinic and tell them you would like to get on a cancellation list (or your doctor could). I had an mri done in four days once because of this -- called a few hours before the suddenly available appointment.

Just a heads up -- sometimes there is sufficient evidence on the mri alone. Sometimes, not so much. It can be a long process. In my case, it might not be ms -- lesions in right areas but they are too small to be causing the episodes I get, according to neuro. Because of this, I've been referred to numerous other specialists to see if there could be other causes for things that are/have been going on. So far, all clear.

Things that help us "do it". Patiently waiting chat Wednesdays at 8 p.m. EST -- lots of support there. Lots of support other times as well, but it was good for me to meet others who were surviving limbo. I started seeing a counselor in the fall (and in retrospect wish I'd started MUCH sooner -- she has been wonderful).

There are medications you can take to help with the twitches and jerking, in particular if it is affecting your sleep. Speak to your primary about this.

Have you had vitamin D and B12 checked? How long have you been having these symptoms?

I'm glad you found MSWorld. Keep us posted .

[Hawaiian Ginger]

Tricare

Call Tricare. If cannot get an appt within a reasonable about of time, you are allowed to receive treatment/authorization (MRI) at a civilian location.

[Evidence]

I had called the day after aspen posted, but there is no cancellation list.

I'll call tricare today for sure, maybe that will work.

My other tests (lyme, myasthenia gravis), were negative, so my doctor is transferring me to neuro in hopes that things will go better there.