Re: just a thought flash
 

Did your Upper GI do an endoscopy? I just had one with biopsy and had my throat stretched. I had problems for years with this and it only got worse. This proceedure worked for me. I have barretts esophagus which accounted for my trouble in swallowing. Just a thought.....ginnie

My problem appears to be in the throat (pharyngeal). Could barretts be that high up?

Re: Yes flashster
 

Barretts can indeed feel like it is just in the back of your thoat. Things stop going down, you choke even taking a pill. It didn't feel like much lower to me at all. My stomach also had erosion, that I knew about and was being treated for acid reflus. If things seem to sit at the back of your throat, I sure would have that endoscopy done. Also the test and even the dialiation to allow me to swallow better was not uncomfortable at all. I ate my first apple in years yesterday, and just had it done on Wed. It would be worth it to at least bring this idea up to your doctor. I wish you all the best, and will be here for you if you have any more questions. ginnie

Hi Ginnie - were you sedated for either of your endoscopies?

I've had one when I was sedated and it wasn't too bad. This ENT seems to worry about the risks of sedation and he hasn't inspired me with confidence.

With sedation they've said they might want me to eat afterwards to check I'm ok ! (I can only swallow thin liquids so no chance)
Without sedation I'm a little nervous about someone ramming it down my throat when I often have trouble swallowing my own saliva!

Flash

Re: sedation question flashster
 

Hi, and I sure hope all goes well for you. I was sedated both times No mention of possible problems with sedation. I think they look at your whole medical situation. D you have other medical problems that could possibly put you into danger for sedation? I would not personnally do the proceedure with out it. I had enough trouble when they put a tube up my nose into my throat.
I had no ill effects eithor from the proceedure, or the sleep medication.
I had biopsy and throat dialiation at the same time, and no pain after. I would question your doctor alot since he has a concern, or expressed a negative comment about sedation. If he is not confident, seek another professional who you are quite sure is confident. Just a thought. ginnie

A quick update, and in case anyone recognises my test results!

All my bloods are now back from the tests the neurologist carried outin January.

The MG antibodies were negative, as was just about everything else.
>Apart from the voltage gated potassium antibodies which were at 122 (normal range 0-100)<

They are doing another EMG & Nerve Conduction Study today.

Based on those blood results, he mentioned something called Isaacs Syndrome, and also that whilst the antibodies to MG weren't detected, it doesn't mean its out of the frame yet.

If anyone has any comments I'd love to hear them. I presume they'll be looking for MG as well as Isaacs at the EMG later today.

I'm not taking any drugs or anything that can affect the EMG (I'm struggling to feed myself on liquids anyway so little I can take that will have any affect).

Wish I had something simple, and glad at the moment they are saying "ALS is out of the frame" (when I keep asking them).

Isaac's, aka Neuromyotonia
 

Do you have the fasciculations associated with Isaac's, a.k.a. Neuromyotonia? From what I've read I think it's not uncommon to have MG associated with VGKC and Isaac's.

Here's a link to the Isaac's forum if you wanted to read or ask questions:

http://isaacsyndrome.proboards.com/

Hi Geode

Yes I twitch alright. Tongue aswell now, hence my worries about ALS which the neuro says isn't in the frame.

I put it down to shear weakness. I gather swallowing issues can be a part of Isaacs also.

I have posted already on that forum - thanks.

Sorry to be jumping in late but thought I could add a little something that MAY help. My husband has MG and I used to be a speech-language pathologist. Many speech therapists specialize in swallowing therapy. If you haven't seen one I would suggest that you try to get a referral.
Depending on what the barium swallow study indicates, they may be able to suggest some compensatory maneuvers to help you with your swallowing difficulties. In some cases a chin tuck, head turn or making a point to hold your breath prior to swallowing may help. These are just a few of the techniques they may try, again depending on what they see on the swallow study. I am in NO way suggesting any of this may help, only a speech therapist who is evaluating you can make that determination.
Good Luck!!!!

Flashter - this is going to sound really crazy (but that's never stopped me before....):

Are you by any chance taking "calcium channel blockers" for high blood pressure?

The reason that I ask is that a few years before my MG diagnosis, my doctor tried switching my BP medicine for one that might work more efficiently. She mentioned in passing that some people start coughing a lot/gagging/etc. when they go on them.

I didn't think anything of it at the time, but a couple of weeks later, I started coughing a lot and noticed that I was gagging whenever I would take my meds in the morning. It got so bad that I couldn't take my meds easily because I had real problems swallowing.

I called my doctor, and she switched my Rx very quickly; as soon as I was off of them, those symptoms stopped. (My mom had the same reaction to CCB's, and had to be taken off of them as well)

Just thought I'd mention it, on the off chance that you are taking a CCB.

(As an aside, CCBs and MG DO NOT MIX; I don't know if a reaction to CCBs would warrant looking into the possibility of being monitored for MG or not - I am unaware of it being a "canary in the coal mine", but it's an interesting avenue of thought)