A complex picture
 

Hello everyone.
I thought I would come and introduce myself here having been participating on the MG forum for the last two weeks.
I first became ill with severe muscle fatigue in 2007 which made walking very difficult. I was consequently diagnosed with M.E. following a positive Epstein Barr. Over a period of 18 months I gradually improved until I was well enough to go out walking again, although I never recovered my full abilities and often became fatigued very easily.
At the end of 2009 I got a virus, I believe it may have been swine flu, with a high temperature. At this time I coughed awkwardly and tore a disc at the L5/S1 junction and my left leg went numb. Consequently on walking for a little over 10 minutes I developed slurred speech and collapsed and was unable to get up as arms and legs were giving way. From this point over the space of eight months I had a series of attacks/collapsing episodes in which all my limbs gave up on me. My speech was constantly slurred and I could not sit up for four months.
I was hospitalized for a month and had MRI brain/VEP/LP and full blood work up all fine. I have had mobile BP/ECG and echocardiogram to rule out cardiac arrhythmia. The ECG showed an exceptionally wide heart rate, with readings 36-186pbm. Consequently my GP now suspects carotid sinus hypersensitivity but feels this certainly does not explain the whole picture and suggests I may also have myasthenia gravis.
I am currently under review with neuro and cardio specialists but my health is rapidly deteriorating and I am now having problems with swallowing, chewing and breathing. I cannot sustain any eye movements (particularly up and to the right side) and muscle weakness prevents me from living any kind of a normal life.
I'm happy to talk with anybody with similar symptoms and would be really happy for any advice with getting a diagnosis and management in the meantime. I've found the support on this site invaluable and regret not having participated sooner.
Sorry for such a long-winded story and thanks so much for reading :)
wild_cat

Wildcat,

Welcome to Neurotalk. One thing I have learned in my disease process of having rsd, is never give up on looking for a complete diagnosis. It may take you several doctors to get it right, some of which may be in the same profession. Only you know how you feel and what happens to you through out your disease process.

In the meantime, continue looking around the forums and join in to the conversations. I know you will find support and friends here.

Hello Wild cat
 

Glad to have you here. You will find support. I hope you continue to find the correct DX. Not everyone who gets Epstein Barr, gets MG. MG from what I understand is difficult to diagnos. Have you gone to a teaching facility, perhaps considered a dianostic center such as Mayo clinic? I know your quality of life is an issue, so please don't give up looking for some help.
If you post near where you life, perhaps a member can give you the name of a doctor who can help. I do wish you all the best, and easier days ahead. ginnie:hug:

Greetings!!
 

wild_cat,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:


:hug:

Thank you so much for making me feel so welcome and for your support. It has made such a difference to know that I can come and talk to people here and it is already helping me understand my condition much better.