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TOPIC: Mystified

Mystified 31 May 2012 20:06 #1734125

  • nick518
  • MG Forum Newbie
  • Posts: 2
  • Karma: 0
Hi again. As I have said before my Father has been diagnosed with MG, but I am a little unsure of the diagnosis. I am the spitting image of my Dad in looks , and health. All through our lives we have suffered with weak limbs, especially trunk, and leg muscles.
We have trouble in the thoracic region of the back, and get numb arms and bad sciatica if we overdo things. My dad now is virtually parylysed, in mind and body.
As I have always had his ailments I wanted to be sure I didnt have MG. But an antibody test, and muscle tests proved negative some 15 years ago. My current Dr refuses to retest me, as I am sure he thinks me a hypochondriac.
Maybe The MG family can help advise me on my symptoms. I am 52, but when I was 11 I ahd a seriouse head and back injury, this has caused very slight Hemiparesis, and my right side is always tense.
But before my crash I was always weak in the legs, couldnt ride a bike far, and couldnt run or jog. After the crash this got worse. I find that if I work on my hands and knees, that this irratates the spine, and sometimes causes double vision. Also I tire very easily, cannot run or walk fast at all. My head and neck are very weak, and this causes muscle tension that causes headaches. Closing the eyes helps this, and relieves the tension.
I am nearly always tired and fall asleep all the time, and my arms tire very quickly if doing things high or outstretched. No matter how I try to build my strength up, and walk for miles, my muscles never seem to improve, and it still feels like walking in quicksand.
I also have Fibromyalgia symptoms and IBS. A physiotherapist said my posture was wrong, but I havent got the muscle strength to hold myself up properly.
Not only do my muscles feel really weak, and oxygen starved, but they hurt badly as well. Sometimes I feel I can walk faster, but my lungs are unable to work hard enough to bring in enough oxygen, and I have to stop to gasp for breath. My heart is healthy though.
My DR is a bit of a joke, and just treats me like a time waster, but I have no good quaility of life now.
PS any kind of stress even very small exhausts me, and my muscles on the right side go as hard as steel. Any Ideas folks, do you think its MG, or something else. I would be very grateful for any replies. Thanks, Nick.

Re: Mystified 31 May 2012 21:22 #1734126

  • ragdoll
  • MG Forum Gold
  • Posts: 1356
  • Karma: 11
Hi Nick,

We do get asked this question quite regularly here, and as I am sure you can appeciate, it is impossible for us to answer as we are neither appropriately medically qualified nor in a position to see you, assess you, obtain all relevant medical information and carry out the necessary tests that would assist in providing a reliable diagnosis.

The only way to find out if you have MG is to get a referral to a neurologist who can carry this process out and is in a position to confirm the diagnosis. To this end if your current doctor will not help you I think you will need to consider transferring to another surgery. This is the only way diagnosis and treatment is provided in this country.

There are so many diseases out there that it would be impossible to guess what may be relevant or applicable especially without appropriate knowledge.

You may find it helpful to document whatever you consider are symptoms and or record them too as evidence that the doctor could view objectively.

Whilst I pesonally know of at least 3 cases of MG (worldwide) within the same family that itself indicates how incredibly rare and unlikey it is, and whilst not making it impossible, the presumption would be for another auto-immune condition I understand, but as I said I am not medically trained, so I may have that wrong.

Is your father (as a myasthenic) in any position to provide you with any guidance?

Good luck and I hope you find an answer

Re: Mystified 01 Jun 2012 09:17 #1734137

  • dusty
  • MG Forum Gold
  • Posts: 1437
  • Karma: 10
Hi Nick

I too think you should consider finding yourself a new GP - one who will consent to referring you on to neurology. From your history and the symptoms that appear to have been inherited I am thinking that you could have one of the Congenital Myasthenic Syndromes, but, as Palo says, you need some pukka advice and testing. This webpage talks about CMS and may be of interest to you ro-mda.blogspot.co.uk/2010/02/congenital...c-syndromes-cms.html

I empathise with you with regard to your muscle pain. I also have fibromyalgia and much of my pain is situated in the thoracic spine area. Like you, I get headaches from keeping my head up, the muscles in my neck tire easily and they also get painful; I support my head with cushions whenever I sit and resort to wearing a neck brace to relieve the pain when it lasts longer than a day. (I am 'only' supposed to have ocular myasthenia.)

I hope you get the help you deserve soon.

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