Hi,

I believe I had been diagnosed by my neurologist at the time with somatization disorder - not referred to a psychiatrist and didn't bother to tell me thats what he thought. I only believe this because every medical professionals treatment of me changed dramatically in 2009 or 2010 (cant remember which sorry) when my neuro discharged me.

I eventually saw my now consultant (geriatrics / general medicine) in November 2010 in a clinic for M.E. The appt was supposed to last 2 hrs and we were kicked out in 45mins as I do not have ME. I brought up the fact that I had low blood pressure and tachycardia amongst a host of other things and he agreed to do one last test- a tilt table test, if that came back negative the diagnosis would be somatization disorder! And I would have no further testing on the NHS!

Ten minutes into the Tilt Table Test in January 2011 I threw up. The consultant told me there and then I had postural orthostatic tachycardia syndrome and in May the same year I was diagnosed with Ehler danlos syndrome. The Dr that made that diagnosis said she believed I also had MG and asked my old neuro to see me again. He refused and he refused to allow any neuros on his team see me. I live in a rural area and Im too sick to travel.

No one knows why my muscles fatigue so quickly, why I have ptosis to some degree daily. The latest guess is that its due to my low blood pressure - which I know can cause stroke like symptoms.

The strange thing is my ptosis responds to an ice pack, mestinon and a drug called midodrine. No one knows why....

I also develop ptosis as soon as a migraine starts and I get lovely hemiplegic ones. My consultant believes its due to central nervous system involvement.

I am still to a certain extent convinced there is something else going on, on top of all my other medical issues, possibly MG.

Really pleased I made your day with a nicked version of the serenity prayer!

Rach

SSRIs and SNRIs both make my symptoms worse and have landed me in the hospital, so I wouldn't doubt this.

Hey Rach, just to let you know, I also have orthostatic hypotension and bouts of tachycardia. My cardiologist believes the MG is causing it.

I used to have severe tachycardia. I was diagnosed with paroxysmal supraventricular AV nodal tachycardia. I had an ablation and I am much better. That was long ago. I was among the first patients to have that treatment.

As far as blood pressure, I have noticed that my blood pressure and my heart rate are inversely proportional. If my blood pressure goes up, my heart rate goes down. If my blood pressure goes down, my heart rate goes down. I think this is pretty typical; it keeps the cardiac output steady. My point is, that if you have hypotension, it seems logical that it could contribute to the tachycardia.

Hi

Backward Pawn thats very interesting. Its well known (obviously not actually lol) that autoimmune diseases like diabetes, MG, Lupus can cause Postural orthostatic tachycardia syndrome and other autonomic nervous system issues. I expect if you did a poll on here of all the members a significant proportion of them would have symptoms of autonomic nervous system dysfunction and hadn't realised it. It seems to be a subject that a lot of Dr's don't mention to their patients.

South Blues, I pretty much have tachycardia whether my bp is normal (doesn't happen very often these days) but yes its even worse when my BP drops. Ive spent most of the morning in bed unable to get up as my bp was a staggering 77/40. So I am feeling pretty out of it at the moment even though my bp is a normal 94/60. (I never actually feel well until I hit around 115/80). Unfortunately they don't do ablations for POTS as it tends to improve it for a short period of time and then it comes back worse.

Thank you both of you for involving me in this discussion. Its nice to be more active again instead of just lurking on this forum xx

Rach

Your blog is very interesting and impressive. Great job

Thanks Steph xx

Rach, I am sort of under the impression that the "icepack" test is the most highly accurate test out there. I have had 2 ophthalmologists, a neurologist, and a general practitioner that are totally happy to put their reputations on the line by insisting that I have MG in spite of everything else being negative. The only other indication is that I do respond to mestinon.

Celeste,

You are quite right. Extensive research has shown that the only condition that responds to the ice pack test is MG induced ptosis. In studies they tested patients with diabetic ptosis, horners syndrome and a whole other host of ptosis patients, the only people that the ptosis improved on was those with MG.

Unfortunately I have encountered a world leading expert in the UK who doesn't believe this to be the case. Due to him saying its not MG no one else in the UK is willing to say it is. Despite several of the Dr's I have seen saying off the record it is. (even some Dr's who work for this world leading expert have told me I have MG).

So I continue to be left in limbo....

My ptosis 99% of the time is resolved by mestinon but apparently my response to mestinon and an ice pack is psychosomatic. Go figure!

Today I have been having psychosomatic issues (lots of sarcasm!) with my breathing making my oxygen saturation drop to 94% on room air, yet on oxygen (I have a concentrator due to the fact they cant explain why I have breathing issues other than one consultant suggesting I'm holding my breath!) its gone back up to 99-100%.

In many developing countries like Iran, Iraq, India where access to the achr antibody test maybe limited or impossible the ice pack test is used. I came across an Iranian Dr studying in the UK who could not get her head around the fact that I didn't have the diagnosis of MG despite a positive ice pack test.

Its incredibly frustrating!

Rach x

I am thinking that the reason that the ice pack works is that it inhibits local acetylcholinesterase, thereby allowing the acetylcholine that is there to hang around a while. Is this correct?