Hi,

I thought I would make you all chuckle and also update you at the same time.

So 12 months ago I was told there was nothing organically wrong with me other than low B12. My muscle weakness, ptosis, double vision, nystagmus, vomiting, nausea, loss of appetite, low blood pressure and joint pain were all symptoms produced by my vivid imagination!LOL Conversion disorder and somatization disorder were hinted at in my notes.

For years it seemed I travelled in the diagnostic wilderness with only you guys on the forum and a couple of other forums for comfort and support for which I am eternally grateful.

Fast forward 12 months and I have changed GP's and hospital consultants. So far this year I have been diagnosed with Postural Orthostatic Tachycardia Syndrome, Low Blood pressure, Hidradenitis Suppurativa ( a chronic skin condition), gastroparesis ( paralysed stomach that works in fits and starts), IBS and Ehler Danlos Syndrome Type 3 (joint hypermobilty).

I saw a rheumy last week who diagnosed the EDS 3 and on the letter I received back from her she writes under the list of diagnosis - possible myasthenia.

I never mentioned MG at all during the consult despite my eye being completely closed and the right side of my face looking like I had a stroke. She had all the info there regarding all my negative tests and yet still she suggests its MG - because I respond to mestinon , my old neuro disputed this.

On top of that she has gone absolutely mental at the fact my neuro discharged me a year ago and has demanded that he sees me again in his clinic. She knows I saw a world leading expert in Oxford last year who also dismissed MG as a diagnosis.

So I am currently waiting to go back and see my old neuro (we live in a small area with only one hospital for 50 miles) and I am guessing he will be really thrilled to see me back in his waiting room. LOL

Every Dr I ever see says its MG....... as long as they aren't neurologists. This one has finally committed herself to paper. When I got the letter from her on Saturday along with the £250 bill as we paid to go private I nearly fell off my chair laughing as during the consult neither of us mentioned MG.

Funny how things turn out. I don't expect I will get an MG diagnosis anytime soon, but for all of you in the diagnostic wilderness there is hope. Keep fighting and dont lose the faith.

Rach