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- Mon Nov 07, 2005 8:51 am
I posted a problem with my daugher who was then aged 12 back in May, who had chronic pain in her legs and was finding it difficult to walk. I received a response from the Dr and we started on the road of trying to get help for her.
Since May she has simply got worse. She was seen by a Pedatric doctor who was baffled and thought it would get better. He organised physio therapy sessions which she has been having twice weekly since June. Although walking slightly better it is still painfully slow and she is still in the same pain. The Physio has stated that she really doesnt think that she is helping our daughter despite the tiny improvement in some muscle tone. We saw the same doctor again in September who told us that he thought our daughter could have M.E. but admitted that he didnt know much about that so has referred her on to a Consultant who has a special interest in children with M.E
However, since then our daughter has developed Scoliosis of the spine with a hump to the left hand side of the spine. Her right hip also seems to be a tad higher than the left. She was assessed by the Physio team as scoring 9/9 on the Beighton scale for Hypermobility and she suspects that most of our daughters joints are hypermobile including her hips which sublaxed the other week putting us all into panic. her physio team couldnt believe that our daughter has not had an xray or MRI scan on her body or that they have not noticed how hypermobile she is. Her symptoms are these:
Cracking and popping of all joints
Walking difficulties, painful to walk
Hypermobility, she can twist her arm backwards for instance.
Very painful thigh muscle hypertonia? Stairs are impossible for her to do as are certain exercises.
Sleep disorders, day and night, sometimes she cant sleep other times she can sleep for 24 hours straight
Stomach pains/worse with her mentrual cycle
Soft velvety stretchy skin
Large stretch marks despite being very slender
Long thin spidery fingers and feet/toes
A family history of double jointedness. Mostly without pain however there are two, including her older half brother who has a history of problems with his hips and scaring.
I am at my wits end as she seems to be getting worse not better and no one seems to know what is wrong with our daugther. My instinct says she doesnt seem to show the symptoms of M.E but would ME cause all these symtoms?
I would be grateful for any advice what so ever, how small it may be.
Thanking you in advance
| Dr. Heba Ismail
- Fri Nov 11, 2005 2:24 pm
The diagnosis of ME or myalgic encephalopathy is very difficult to make. There has been several trials at setting diagnostic criteria, but have not been universally accepted.
The most accepted definition is that it is a clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities. This together with the concurrent occurrence of four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. These symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue.
Inspite of there being no diagnostic test, there are a number of lab studies which may be helpful in the diagnosis and include: hemoglobin, WBC count, ESR or CRP, liver function tests, thyroid function tests, kidney function tests, electrolytes, creatine kinase, urine tests for sugar/protein and, in some cases, investigations should also include checking female hormone levels (serum oestradiol) and adrenal gland function. If these studies have not been performed, please ask for them.
Other studies, such as a CT or MRI should be ordered upon suspicion of another underlying cause.
Again, if you are not satisfied with your physician's diagnosis or decisions, you can always seek care elsewhere.
I hope you find this information helpful.