Chickened Out!

[Sammantha]

I went to Chapel Hill today... I was going to say ALS or MND out loud but i was too scared I guess.... The doctor was great as usual. I think he gets a kick out of my right leg, he kept showing the other doc what an example of clonus is. He told me that I did not have Myasthenia Gravis and that the weakness the EMG picked up did not match up with what Myasthenia would have put out. He wants to do a MRI or CT scan of my whole spine not just my neck and brain like the others. I will be getting another EMG, this will make it my third at UNC and six all together. This next one he wants to put my hands in ice and what not? The doctor is really trying to find an explanation other than (you know what.) He also wants me to see his physical therapist and to measure my muscle performance again. The only thing i was upset about was that he never received the CD of my thymoma cat scan! So he could not comment on it.. He said we will save that for the next visit! All in all it went well...... Thanks to all those on here that keep up with me, and Rose i thought about you being there!

 

[BethU]

Thanks for letting us know. He's going to put your hands in ice for the next EMG? I think you're going for the record for EMGs. Well ... at least it isn't (you know what). As long as you don't get that diagnosed, it's a good visit.

Hang in there.

 

[planningguy]

Hopefully, you are on track for getting some more answers. I'm glad you felt the Chapel Hill doctor was a good one.

When I went to the University of Utah they iced my hand down after the NCS and prior to the EMG. From what the doctor explained to me, this was mostly because EMG's of the hand (particularly the thenar area they were testing) tend to be a little more uncomfortable than other parts of the body. When I had the EMG at the Mayo they didn't ice my hand down.

Best of luck moving forward,

Robert

 

[crystalkk]

Sam,

I'm happy you like this doctor and you are home safe.... I think it is quite a drive for you if I remember correctly.
When are you going back for the EMG?
Please have a back up person to go with you incase the first person can't go.

Robert- thanks for explaining the ice thing....

 

[lydia]

Sam,

I got a chuckle out of your ("you know what") and feel we should revise that to that-which-can't be-named or something like that (from Harry Potter; too lazy to get up and check the proper wording for Voldemart or whatever the bad guy's name is). Do you have to drive all the way back for the EMG and the other tests? Or are you still there? How does that all work if you live quite a distance away?

Lydia

 

[rose]

Sam sweetie.

I'm proud of you! You continue to hang tough.

Thoughts.... get the cd of your tymoma to him, & importantly, have your scan of spine set up. No telling what may have been missed.

EMG test results, (according to neurologists who perform them) cannot differentiate MG from MND aka ALS aka "you know what" aka Voldemart,.. So this is a good good thing that your tests don't indicate MG.

I'm very puzzled about the Thymoma. Apparently people can have them and not have MG

You're right, I was right there with you yesterday! So, I guess I'm Rose aka The Invisible Woman. :wink:: Seriously, I can't even esitmate how many times I thought about you, and wondered how your appointment was going!

Robert, it was great to see you post. Thanks for clarifying the ice thing.

 

[Sammantha]

Thanks everybody! The drive is three and half hours, they will be calling me back to set up the EMG and physical therapy test.. I want to coordinate it with my next day off, so we could not make it that day. The closer i get to having everything ruled out the less gun ho i am about my appointments. There is a man that works on the first floor where i work who has some sort of disability, his body is all twisted terribley and he walks with a cane but he is there almost every day....... He's an inspiration. Well i am ready for bed, oh good news! I may start getting b12 injections because mine is always low, the doc said it is not low enough to cause my neurological problems but might be why i am so tired all the time.... I have been taking a b12 liquid supplement under the tongue and i notice a change in my energy i highly recommend it to everyone.. Believe me i know when i forget it! If you all have family like mine, then for years they have been sending you the latest and greatest cure all, vitamins and what not........I am jaded from all that stuff. The b12 pills did nothing, BUT the liquid or tablets that go under your tongue really help for fatigue

 

[hopingforcure]

Sam,
I can tell you that even if you did not mention MND, the neuro would of told you MND without you mentioning it. I think it is a good sign, you are a trooper, we are here whenever you need us. Keep your chin up sweetie.

 

[planningguy]

Rose - I've been pretty quiet in terms of posting, but I have been reading up on how everyone is doing. You all are too much fun to stay away. I'm hanging in there and will go back to the neuro after the first of the year. A few things have gotten a little worse, but for the most part I'm just trucking along.

Sammantha - I'm hoping getting your b-12 levels consistent helps out. Once I got the pernicious anemia under control, it made tackling everything else a lot easier. B-12 injections are great and are probably the cheapest prescription you'll ever have filled ($15 or so every 5 months or so). I get a multi-dose bottle and do the injection myself. I use a sublingual (under the tongue) liquid suppliment as well. I don't know how great the absorbtion is that way, but it seemed to help in between shots.

Take care,

Robert