You may remember me from the old gang
 

Well for those of you who remember me (I joined neurotalk in 2008) I was diagnosed as having seronegative MG in 2007 and then that diagnosis was removed in 2009/10.

In 2011 I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTs) and Ehlers Danlos Syndrome (EDS). Ptosis only seemed to bother me occasionally and my doctors put it down to low blood pressure or EDS.

In April this year I felt the best I had in years. I started to increase my activity levels after years of not doing very much. Within 4 days I was having to have a nap in the afternoons. I noticed when I was trying to walk I couldn't move my legs. It was like my foot was stuck to the floor. I had to shuffle rather than walk. I noticed I was having more problems chewing and swallowing. Then Ptosis came back. Initially for just a day at a time. Now however its back, I have had it for 9 days straight.

Last week I saw my hospital consultant (the one I see for PoTS and EDS) it was the first time hes ever seen me with ptosis and pupil drift. I took a freezer block with me to the appointment and performed an ice pack test in front of him. He said "you do know that's a positive indicator for MG". I laughed and said "seen it, done it and got the t- shirt." He told me "unofficially I think you have MG but I am not a neurologist so I can't diagnose you"

So after a 8 / 9 year break of trying to get the drs to listen to me about my muscle weakness and Ptosis, I am back on the hamster wheel of attempting to get diagnosed. You can see photos of my ptosis on my blog - the post is called Ptosis again http://http://wp.me/p4zBAs-mU

So as I thought I am back where I started I'd pop in and say hello!

Rach

Welcome back. Sorry your symptoms returned.
Mike

Hi Mike,
 

It is nice to see some of the old gang are still here!

Yes the symptoms came back with a bang the minute I increased my physical activity. My PoTs consultant has asked my gp (primary care) to write me a prescription for mestinon today. I actually threw all my mestinon out a few months ago as it was two years out of date.

In the meantime I have been taking Huperzine A which is like a natural mestinon. Up until a few days ago this was working and resolving the ptosis but its stopped working now. 9 days of ptosis and I am going nuts yet I lived with it for 9 months solid back in 2007.

Thanks for the welcome back Mike! Its "sort" of nice to be back here.

Rach x

Mine finally hit me with a bang. Had skin cancer removal. This one was deeper than the others. Ended up oin hosp for 8 days. Still trying to recover. Having to use a walker. Dr's told me to have future removals via radiation. My dermetologist never mentioned that.
Mike

Mike,

I am so sorry to hear that.

I can't believe the dermatologist didn't inform you properly about future removals. That's just awful.

I really hope you start to pick up soon. I hope the walker helps, I have to use a wheelchair outside the house, crutches and a cane inside the house just depends how rough I am on any given day. It took me a long time to get my head around it. However I know what happens if I push myself and its not worth it.

I am just so sorry Mike

Rach x

To top it off on my last visit I asked him and his nurse if there was another method for removal. They both danced around the question. He is supposed to be the best in the state.
Mike

Mike,

with the treatment I have had from Doctors over the years, nothing surprises me anymore I am sad to say.

I now try to avoid the local hospital that dealt with me when I was first diagnosed with MG, then not. Fortunately I have been able to transfer my care to a hospital an hour away. I still hate hospitals but I am no longer panic stricken entering the place like I was with the local one.

I hope that you are able to move your care to another Dr as clearly he isn't the expert he purports to be. It doesn't give you much confidence in them when they pull a stunt like that.

Rach x

Hey, Rach! I'm so glad to see you here again! Well, not glad that you're having a return of ptosis and weakness.

As I said in my other response, please ask them about a CMS. Since there are clusters of people who have a CMS in the UK and other parts of Northern Europe (sorry if that's an insult—that's a genetic comment, not a political one!).

I wonder if Huperzine A is short-acting, as Mestinon is. I wish there were more studies on that "drug." Do you have any effect on heart rate when you take it?

I also wonder, as you have, if you might have a mitochondrial issue. Has anyone ever talked about a muscle biopsy?

What some patients have gone through is tantamount to bullying. Doctors should not be allowed to treat patients that way. Bullying runs counter to their alleged oath of "First, do no harm!"

Mike, that's just plain dumb. So many doctors don't understand the impact of drugs (or a hospital) on MG. I'm sorry you have skin cancer.

At least now you are prepared for the neuros, Rach. How much more evidence do they need of an acetylcholine problem?

:grouphug:
Annie

Hi Annie,

Yep I am back! lol like a bad penny.

My PoTs consultant has raised the issue of CMS with the neurologist he has referred me to ( I received a copy of the letter today) as I have had double vision since I was a kid especially in the evening. I was a voracious reader as a kid getting through a book or more a day. I loved Enid Blyton, I think I have read everything pretty much that she ever wrote.

The Huperzine A stopped working, either because due to it being a "memory" supplement there wasn't enough magic juice in there or because it was a supplement not all tablets were created equal. I have mestinon now and I am taking 30 mg twice a day. Yesterday was a bad day and the tablet was only lasting 90- 120 minutes.

I have been trawling through the forum as I feel like a complete newbie there is so much I don't remember about MG, which I used to know inside out and backwards. Yesterday after reading a post, I decided to try holding my arms out in front of me. I lasted 15 seconds before it became too painful due to muscle fatigue to hold them up any longer. Then I couldn't use my arms for an hour due to the shaking. Not my brightest idea but the weakness has crept up on me and I didn't appreciate how bad it is.

My PoTs symptoms feel a lot better when I am on mestinon but that is no surprise as it is an off label treatment here in the UK for PoTs as it increases standing blood pressure. The only problem is I have the usual stomach problems, lots of gas, needing to poo (sorry if thats TMI) much more LOL! I have noticed my bladder situation has improved a lot since taking it so I wonder if my continence issues are to do with MG (some of them).

My PoTs consultant is sure that it is MG or some other neuromuscular junction issue. I don't think he will let it rest until we know what is wrong. Hes a good man. He helped me so much last year through my spontaneous CSF leak.

Thanks Annie, its nice to be back amongst people who know and understand,

Rach x

Hi Rach! Remember me ? I have had a return of symptoms too and was thinking of the old gang today and logged on and look what I found ! Sorry to hear you have had it all return too.