Discussions By Condition: I cannot get a diagnosis.

Progressive muscle weakness

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • September 7, 2007
  • 11:27 AM


I'm desperate. Please can someone help.

I'm a femaile. I was diagnosed with sporadic muscular dystrophy at about 17 (now 41). This proved incorrect. I had a further diagnosis of spinal muscular atrophy about 5 years ago. A recent gene test disproved this. I was in Thailand about 7 years ago and had a blood test done which matched the DNA to blood banks in USA - also no match.

There are no similar illnesses in a family of 6 or in their children (10) or parents.

Amino acid tests resulted in zero arginine in my system among others which were too high or too low. Apparently arginine results in muscle weakness similar to muscular dystrophy but since starting the supplements in April 2007 there has been no increase in strength. In the past 2 yrs I've become progressively and markedly weaker. I have been using an electric wheelchair for the past 5 years.

Between 1 - 2 yrs I apparently had a seizure (caused by high temp?).
3 - 5 - regular yearly bouts of tonsillitis
polio vaccine
3-in-1 vaccine (mumps, rubella & ?) not sure about this
an op to remove a peanut which went down the wrong way
6 - father passed away
6 - serious bout of dandruff
7 - 12 - 2 full body rashes treated with cortisone cream (caused by nylon schoolwear?) - rashes went away (also caused by arginine deficiency at that stage" I don't know)
7 - 12 - also a bout of anaemia, falling asleep in class. Also treated and not recurred.
Flu vaccine at 11 - developed flu

14 - 17 - medications - weight loss pill and contraceptive pill

Muscle weakness began developing at about 14 - 16. When walking, my right heel would catch my left ankle.

At about 20 I was struggling to wear high heels and walk up stairs.

By 30 I could not walk without holding onto someone for support and also for short distances.

Stress of first husband passing away and later remarried and divorced (during this time I lost the strength in my shoulders - about 30).

By approx 34 - 36 I was in an electric wheelchair.

Now 41 and whereas I could previously get out of my car seat and walk sideways to the back of my wheelchair - I can no longer get out of my car. When parking on a raised level I can get out of my car, but as I move towards the back of my car, my hands start perspiring so much (anxiety about falling?) that half way I become immobilised and cannot move my feet at all.

Is there a possibility that this can be a mollecular cellular malfunction as it does not appear that it is nerve or muscle related at this stage and I'm at a loss as to which type of specialist to consult to investigate this further.

A recent kidney test showed my kidneys were functioning perfectly. I've been receiving treatment in accordance with the NES Professional for about 20 months and the liver meridian keeps coming up - but have given up on using those drops as they cause further exhaustion and weakness (perhaps the amino supplements will help this as it seems an arginine deficiency also causes liver fattiness).

I experience fatigue on a daily basis.

Please help. I'm desperate and becoming weaker by the day.


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