My visit with MDA docs today
 

Hi everyone! I've missed you all but have had a little trouble strength wise since my eye visit, and working and having company. WHEW!

I had my appointment with the neuro at the MDA this morning, and imagine this - SHE DIDN'T MENTION MS!!!! I will be scheduled for a SFEMG and spinal tap. She says she's not 100% convinced either way on the MG yet, is doing the spinal tap to check on ALL the Herpes family of viruses since my HSV-1 was so high and the Acyclovir has had such a positive effect on me.

The SFEMG is kinda two fold. Either confirm the MG and/or detect other issues. She mentioned a new one for me - periodic paralysis.

And guess what, when checking my muscle strength which was generally pretty good this morning, she said that it's like a car problem. You go to the doctor and it doesn't show up. It was so nice to have a doc acknowlege that as a problem for us! I told her so, too. So often we go, they test, we're strong that day, and they end up doubting everything we say!

I told her I am so sick of not having answers and having to deal with all this, and she agreed it's been a long time to suffer, but cautioned it might take them awhile to nail my problem(s) down. Just knowing she intends to do that helps the attitude so much! Even though the anti-virals have helped so much, without formal dx's we always have that nagging feeling don't we. For one thing, if they give me a dx maybe I won't have to go through all this testing anymore - sheer HEAVEN!! that would be.

No more docs giving me conflicting dx's - no more "it may be MS" - no more taking back dx's I already have! So I guess I can endure a little longer with the hope of a FINAL resolution.

Hope you all have a wonderful and strong day tomorrow. I'm going camping (finally) this weekend, so probably can't get back to check on you all for a while. Wish me luck on catching a BIG fish (and have the strength and endurance to actually get it into the boat!)

Love to all!:grouphug:

Becky,
Glad you are finally making some progress toward a dx. Sounds positive. We will just keep believing that good things will come to those who wait.....but not too long! Have a great weekend and catch the biggest fish and brag about it to everyone. Strength to you all weekend long and enjoy....you deserve it!!!
Hugs,
Simon

Becky
Process of elimination is such a long road ! I went through that also, I hate hearing that so many have to go through it ! Here I am going through it again for an overlap ! Unbelievable. I know from going through it before, that there is a diagnosis, as soon as they get enough info to go on.
Mary

Hi Becky

I hope all goes well for you.

With the spinal tap its important that you lie flat for as long as possible after you have it done. My drs told me to drink lots of caffine to try and avoid the post spinal tap headache. Unfortunately it didn't work.

Headaches can appear up to 48 hrs afterwards and the only thing that will relieve them is lying flat, whilst your body replaces the spinal fluid it has lost.

If the headache is absolutely unbearable even when moving your head whilst lying down contact your dr. You may need a blood patch. All that means is they take some blood from your arm and inject it into the spinal tap site. That should stop the headache.

I dont mean to scare you and Im sorry if I have. No one told me anything about the side effects and I wish I had known so I didn't find them so frightening.

Its not the most enjoyable procedure but done well its practically painless. And only 1 in 10 Im told develop the headache.Im just lucky I guess!

Wishing you lots of luck
take care
rach

Becky, I just wanted to say that I think it's fantastic you found a doctor like that. Isn't it shocking when that happens? ;)

Sorry I didn't respond sooner. My MG is acting up. I sent it to its room! :eek:

Annie

Hey honey!