Discussions By Condition: I cannot get a diagnosis.

hereditary vascular disorder misdiagnosed?

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: flippingWilson
  • December 9, 2008
  • 03:21 AM

hello all, I really need some help. I was born with a circulatory disorder
my family never seemed to think much of it, (the other's that inherited it in my immediate family) but now in my early forties I have finally discussed it with the others at it would appear only my cousin and I seem to have it far worse than others. The symptoms are:

total muscle seizure when muscle is asked to preform. If I were to do something with a lot of force, it is as though my brain is able to tell the muscle to work but when it comes time to release they just don't, it ends up taking twenty to thirty minutes to finally relax and function again.

I can honestly say this effects every single muscle in my body, if I were to eat an ice cream cone my entire mouth and jaw seizes up and will stay in a position until (again) it relaxes again.

No point in giving more examples, this is my problem in a nut shell, it may not sound to severe but if you were to take a trip in my body I'm sure you would be quite afraid of these physical problems and what potential danger they can cause. Not to mention the obvious mental effects this disease has created in my brain, deep depression, border-line personality disorders, panic attacks, severe anxiety.

Please, is there anyone out there that can understand this or can identify my problem. I have been reduced to a shut in after leading quite a normal life, lost a great deal of body weight, thus leading to depression (as I have said,) but more importantly I have very close to losing my life due to this particular disorder.

thank you all again.

thank you in advance.

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1 Replies:

  • There is one inherited disease that comes to mind. Myotonic dysrophy is inherited through the maternal line so hopefully that bit of info will allow you to dismiss this possibility.It manifests in muscles which do not release properly and often a fozen appearance.The disease shows anticipation which means that the symptoms gets worse through the generations of a family ie grandmother only has slight muscular difficulty whereas the newborn grandchild is born with muscles that can not relax at all.There is lots of info and help groups on the internet.If you live in a country with a nationalised health service, there will be lots of support available.Best wishes
    chrismia 159 Replies
    • December 9, 2008
    • 03:23 PM
    • 0
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