Thanks for adding me to your group! Much appreciated!

[gmarcy]

gmarcy. Thanks so much for adding me. In hospital right now as they try to sort things out for me. Lots of lower back pain and difficulty in breathing. I was diagnosed in Feb 2017. It has been a difficult journey.

[CDreamer]

Hi gmarcy - how long did it take to get diagnosed?

If you live in the Uk Have you joined Myaware - lots of info, help and support. If you join - free - you have access to benefit support advisor and counsellor if you need them.

You will find their FB page far more responsive and there are several other very supportive groups on FB where we share information and support each other in the UK. Anywhere else in the world will have their own support orgs.

myaware.org/i-have-myasthenia

facebook.com/groups/Myaware/

facebook.com/groups/9324649...

I was diagnosed in 2013 and manage on immune suppressants and Pyridostigamine, thankfully avoided steroids.

Best wishes CD

[gmarcy in reply to CDreamer]

I was first diagnosed in Feb 2017 while wintering in Mesa, AZ. I started with so many problems with slurring my speech. I also experienced breathing problems and difficulty holding my head up if I had my head bent down for awhile, i.e. chopping veggies, etc. as I was having lots of company over for Chinese Food. My symptoms got worse as the day progressed and it was actually my sister-in-law who figured it out, thank God.

I am on meniston, prednisone and ultram. When I was in hospital recently I was diagnosed with lung blood clots that had been going on for some time but they blamed everything on my MG. I guess that happens, unfortunately.

I live in Esterhazy, Saskatchewan Canada. I don't know anyone else who has this disease so support groups are my lifeline!

Thanks. Gail

[gmarcy in reply to gmarcy]

Actually I was diagnosed very fast because of the research my sister-in-law did. I had only one visit to the doctor and when she was looking at me with such a puzzled look on her face I decided to take the plunge and tell her what my sister-in-law figured out. She looked at me and said, "I believe she may be right". She then sent me for blood work and the rest is history.

[CDreamer in reply to gmarcy]

I started with sudden onset, double Ptosis - whilst driving - very scary in June 2013. It took until September before I saw a neurologist and had to go privately because it is so difficult to get an appointment on the NHS. I am AChR positive so diagnosis was easy, thankfully, as so many people seronegative have difficulty getting a diagnosis.

I take Mycophenolate & Pyridostigamine and was spared the steroids - I really like my neurologist!

As far as I know the blood clots have nothing to do with Mg???

I have Atrial Fibrillation so I take anti-coagulants anyway.

How is the knowledge and treatment in Canada for Mg?

[gmarcy]

No, the blood clots are anither issue but my doctor kept saying the symptoms were MG related causing me months of unnecessary pain and shortness of breath never mind the risk of worse.

I am honestly not sure how knowledgeable the neurologists in Saskatchewan are as my exposure has been so limited. The treatment seems similar to what others in support groups are getting.

I feel fortunate that I was diagnosed so quickly.

[Louby-]

Hope they get you sorted asap, and home to your own comforts

Big warm hugs xx