HI All, and BGB!

I went in for a 2nd opinion today. and things look promising! I was misdiagnosed with MG back in '07 and i have been on medicine that i didn't need for a year now. I am working to get off of the medicine and it is possible that the sx (esp. the weird ones) are resulting from the medicine and the withdrawal from it!

I would be so happy if that were the case. I mean I'd be a little embarassed but hey I'd take embarassment over MS any day/!!! The new neuro is going to order an MRI of my brain to rule out any possible MS but she feels fairly confident that it will come back normal. I sure hope so! that would be awesome!

I have learned my lesson about pushing for a dx too quickly. and about letting what i know about different diseases get the best of me (make me so attentive to my own body that the little "normal" things become huge things and then the wrong dx is made!

I seem to have a pretty good neuro right now and she is willing to work with me to help me get somethings ruled out! I hope we rule out everything!!!! It also helps that she is close to home and they accept patients w/o insurance! soooooo I'm feeling a little bit better and so glad for the good news! I still have balance issues and doubble vision (intermitantly) but the balance could/might only be caused by the doubble vision and that usually only occurs under stress or when very fatigued.

as for the muscular problems they are likely to be caused by the meds that i was on for the disease i didn't have. so hopefully when the meds go away, the muscular problems will too!

thanks for all the love and support that ya'll have shown me!
Rachael!

Just wanted to send ~~~waves~~~ to everyone and let you know I ate the last donut

Brain, let me know how that new drug works for you....side effects and all that jazz...very interested!

HI gals and guys~!

Thanks BRAIN for using a larger font, that really helps. I too hope these new meds and shots work for YOU, you deserve it !! Hey..send us a pic of that gorgeous GD with YOU in the pic ok?

Finished my 2nd sleep study with the CPAP. I didn't notice any relief or changes, but the mask was way too tight on my face and I kept pulling at it to loosen it up. I will tell the doc next week.

TODAY I woke up with pain in my lower jaw/teeth that moved up to my left eye and then my whole left side hurt and was tingling. I went back to bed with OTC Migraine med and after a few hours it went away, so I went to work late.

Ever hear of such a thing? Is it a migraine, on ONE side???

Jan
P.S. MOnday was Frank's ( my deceased DH) birthday and I did ok!!

Jan - classic migrane is described as being on one side. In fact for years, they didn't accept that you could have them on both sides. They do now - I could have told them because I get both-side migraines.

It's not the place of the pain, one sided or not. It's not even the intensity. It's more the type of pain. Migraines are stabbing, throbbing. Headache means just that, an ache.

I think you had a migraine. Sounds like the mask could have brought it on.

I'm glad the test is over at any rate, and although you stil don't have answers, you know it's not a sleep problem and won't have to shuck out the big bucks for the CPAP equipment.

GJ - More donuts?



I'm still leary of new meds. I've had a few scares. But nothing in this one sent up red flags. So somebody has to try this stuff so the rest of you know, right? May as well be me.

Cuz I'm cool and that's how I roll, lol. (I've been saying that ever since that thread.)



Rachael - I'm glad to hear you found a good neuro!

Yaknow, when I first started in limbo, I wanted answers yesterday too. I get it. We're used to that though. We always went to the doc, and he told us what was wrong and generally fixed it.

This is a whole new game, and it takes time to figure it out. That is why we do this check in thing, and why this board is SO cool. Without these people, I don't know how I would have gotten through that time. I would have lost my mond, lol.

This is hard, but you will find you're stronger than you thought and you will be okay. When you feel like you're losing your grip, you just yell out, and we're right here, okay?


Debbie - You may want to ask if an MRA would help rule out ischemia. It's like an MRI of the blood vessels. I had one along with my 1st MRI, and it showed I had no vascular changes. They did it because at the time my chief complaint was migraines - they thought I'd had a stroke or tumor, the migraines were so bad.

Just an idea.

And I hope you have an awesome time in Hawaii. I think we should all go, as PT or something.



McG - I owed you some beer? Here ya go. Good luck at the neuro. And hey - I played my guitar today! The grandbaby sang along to some Bob Dylan. Aw, she is TOO much like me.

ROFL!!! I lick homeless men b/c I'm cool and that how I roll!!!

Sorry Jan, I forgot about making the print bigger!

Hi all! I saw a physical therapist last week for the difficulty I have with walking, namely, the muscles (or whatever) in my upper leg/hip get extremely strained after a couple blocks of continuous walking. Walking on level ground feels like walking uphill.

This problem has been going on for many years and no one has really taken it seriously until my new family practice doctor referred me to PT.

Surprisingly, the PT could not say why this is happening--apparently it's not some particular syndrome, no obvious cause--although I don't think she did a really thorough evaluation. (She did not look at my scoliosis at all, nor discuss my posture or test my strength thoroughly.)

She found I had weakness with prone leg extension--lifting my legs while lying on my stomach was nearly impossible!--I could barely get them off the table. However, this was a last-minute finding, when I asked her one last time--so there isn't some specific muscle you can identify that is causing this problem?

She really seemed pretty disengaged, and wasn't interested in looking at the orthopedist's report or spine MRI reports. No speculation at all on why this is happening.

She gave me some exercises and suggested using walking sticks. I'll see if that helps.

I really, really would like to get back to walking FAST and easily like I did years ago (and this is not a case of deconditioning, I'm sure, because the problem began when I was still walking regularly). Walking continuously is now an uncomfortable chore with heavy, strained legs. My regular neighborhood walk used to be a breeze, a pleasant experience. No more.

Nancy T.

Hi y'all, I'm exhausted and way behind... not ignoring anyone.
Dr.s most of the day, switching to an immunosuppressant (sp?) called IMURAN, and will start Prednisone taper in 2 weeks .

Explanations and questions and hellos to each of you soon, but i am heading to bed finally.

Sometimes PTs can fgure these things out for you, sometimes neuros have some ideas, and sometimes not. Since you haven't gotten answers from these docs yet, you may want to ask for a referral to a pain clinic.

I know, you did not mentionm pain. But they are really good with all matters of the spine - where any sx related may come from. Even if there is only a minor ache and loss of strength, go in and let them know about that. They are specialists in that area.

They will know what to do for you from there - my clinic even has its own PT, designed around the pain docs assesment of where the sx is coming from, to insure there is no further damage.

And since you aloread know you have scoliosis, this could be the problem. I'm sure a good one will know what the deal is.

One other thing... just because your other docs aren't handling or can't handle this thing, doesn't mean they're not good docs, it just means this may be outside their realm.