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Being Sent For Blood Test For Myotonic Dystrophy


retiredat44
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I went to a neurologist appointmnet at the VA. the doctor informed me there is a blood test (DNA test) that wil show if my genes had Moytonic Dystrophy. i have wondered if such genes exist. he said he has to make a special order for the test and they will call me when I can go have the blood test. I asked about the differences between the neurological and muscles in regard to involuntary body movements.

I have found that neurolgists ususally do not like to explain much and are very hard to communicate with. They seem to have rigid views. they are very difficult appointments. i also pointed out that since I lived int he VA in a hospital bed, the nurses that took notes on my conditions had to have written down every things, everything i did and said was recorded in progress notes. They had eye witness accounts of the way my body acts. I said that al lthat information is in my records, which would help detrmine my diagnosis for al my health issues. that is because when you see a doctor he/she only sees you for 10 minutes and most likely wil never see the problems first hand. but, the nurses that cared for me saw most everything, first hand many times.

Any way, I am happy that maybe a blood test will show something. i often lose ocntrol of the movement of my body and it get extremely bad if I leave the house for extended priods of time for more than an house, and go into stores, sometimes I feeel like I will just fall, flail, and get sick... unless I can get home, lay down and rest for sveral hours or days..

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I also found out some of my medical records till show the wrong dignosis of being HIV positive.. and al the test have shown I do not have HIV, yet my records stil have entries saying I do.. I was sitting at the computer at the VA in an exam room, when the doctor saw those erroneus HIV records.. as the doctor entered my exam results, he pointed out that the HIV entries are still in my records..

I also found out that my left catract (the right catract had already been replaced (2007) is growing, and also I may have Glaucoma, but they will not know until my next eye tests in a few months..

Edited by retiredat44
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I told my neurologist about my body jerking and movements and not being able to rest, nor go places without my body going out of control. he prescibed a prescription of clonazepam pills. I take one each nigth at bedtime. So far, immediately, I feel much more relaxed and can rest and even sleep without my body doing weird things like limbs jumping out and problems sleeping.. this drug seems to really help a lot. I have had doctors try me on several drugs, but do far this one has been the most help.

My big problem currently is I am in such great pancreas pain that ther eis no way I can even walk the dog around the block without intense suffering in agaon. I acan only lay around. I am afraid tha tif the swelling and pain does not stop and lessen I am going to be in the hospital very soon. I could not even eat more than a few spoons of dressing and mashed potatoes for Christmas. Just pure agony from the pancreas disease...

I still have to go through all the boxes, large boxes of medical records to submit for my ongoing appeals..

Not to mention that my eye test shows the cataracts in my left eye are growing faster.. and that the glaucoma tests show building pressure..

I need to get those damned papers organazed and submitted.. I need permanaent rest, the stress, pain, and sickness if killing me off fast..

I need to get the benefits for my family, the schooling help for my daughter, and a newer car before out totally disingratwes,, also the places we rent is expensive and I dislike th eplace,, I need a queit place away from the large city but close enough so I can get to my doctors in time for appointments and emergencies.

life is hell... I need a peaceful last for days and years of my life. is that too much to ask!!

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medicine: (clonazepam) seems to work, so far.. only precribed to me in December 2010 by VA neurologist

I believe I have these:

Myoclonic Seizures, Sporadic (isolated), jerking movements. Also Tonic Seizures when the toes and/or fingers move and stiffen

------------

http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms

Generalized Seizures

(Produced by the entire brain) Symptoms

1. "Grand Mal" or Generalized tonic-clonic Unconsciousness, convulsions, muscle rigidity

2. Absence Brief loss of consciousness

3. Myoclonic Sporadic (isolated), jerking movements

4. Clonic Repetitive, jerking movements

5. Tonic Muscle stiffness, rigidity

6. Atonic Loss of muscle tone

========

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I also found out some of my medical records till show the wrong dignosis of being HIV positive.. and al the test have shown I do not have HIV, yet my records stil have entries saying I do.. I was sitting at the computer at the VA in an exam room, when the doctor saw those erroneus HIV records.. as the doctor entered my exam results, he pointed out that the HIV entries are still in my records..

I also found out that my left catract (the right catract had already been replaced (2007) is growing, and also I may have Glaucoma, but they will not know until my next eye tests in a few months..

anyone have any idea how a diagnosis of a disease being found genetic vs other causes (i.e. environment, toxic chemicals, etc,) how and what kind of outcome could occur in each instance? In regards to winning a claim for the disease and symptoms...

thanx..

(I still have not gotten back the DNA results yet, as I only took the blood dna test a few days ago..).

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