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Guest
Guest
Hi there,
I really hope that there's someone who can help. I have to be honest and say that until yesterday I had never heard of PLS.
I'm afraid it a bit of a long winded story and I hope that you bear with me.
I am 47 and live in Australia. I have had so many tests during the past couple of years it's just not funny! Anyway, back to the beginning.
It started in my hand. I was tightening a drill bit one day and my fingers locked. I say locked rather than cramped but it's difficult to explain. Doctors look at me strange when I say locked. It only lasted a few seconds but when the muscles were put under strain again they locked / cramped repeatedly. Over time these muscle locks / cramps started to occur elsewhere in my body especially my legs. My feet would cramp when driving, my calves when walking...whenever the muscle was extended or stretched it just cramped. I could only walk short distances without my legs getting tired and I would hobble (that's the best word!) around. The pain and stiffness in my legs was (is) worse on a morning and late at night. I described it to the doctors as a lazy persons illness as it's not as bad if I sit around watching tv or not doing much...but it's extreme if I exert myself...like a battery that gets flat from use!
I have had arms full of blood tested...have had an ultrasound on my liver, an MRI,a muscle biospy, two muscle conductivity tests, visits with rheumatologists and now my third neurologist! In between all this there has been countless visits to my local gp...I am convinced that most of the doctors think that it's in my head!
I have a visit on the 14th of this month with a neurologist to get the results of the muscle biopsy.... According to the neurologists they have excluded MS, muscular dystrophy and MND as there's no muscle wastage or lack of strength.
Just to compound the story I have to add that there's something that has made things better. I mentioned to my gp that the symptoms were less severe when I was sick with a cold or flu...she latched on to auto immune diseases and prescribed predsolone which is an immune supressant and anti inflammatory. The solone takes away the stiffness and cramps, puts a spring in my step...but only for a while. The heavy legs, the aches behind the knees and the refusal (best way to put it) of the legs to listen to the brain to walk faster and become less heavy wears off on an evening and all the problems return. It also only works for a while before the dosage has to be increased and doesn't remove the cramps.
Anyway...do you reckon it's PLS?
All the tests are clear...I am the sickest well person around...sorry...I know how many people are suffering and to what extent but everything says that I am fine.
I would really appreciate any comments. I have to admit that I actually felt relieved to find something that fitted my signs and symptoms. Is it normal to go through such a long period of tests before PLS is diagnosed?
Thanks....
Shaun
I really hope that there's someone who can help. I have to be honest and say that until yesterday I had never heard of PLS.
I'm afraid it a bit of a long winded story and I hope that you bear with me.
I am 47 and live in Australia. I have had so many tests during the past couple of years it's just not funny! Anyway, back to the beginning.
It started in my hand. I was tightening a drill bit one day and my fingers locked. I say locked rather than cramped but it's difficult to explain. Doctors look at me strange when I say locked. It only lasted a few seconds but when the muscles were put under strain again they locked / cramped repeatedly. Over time these muscle locks / cramps started to occur elsewhere in my body especially my legs. My feet would cramp when driving, my calves when walking...whenever the muscle was extended or stretched it just cramped. I could only walk short distances without my legs getting tired and I would hobble (that's the best word!) around. The pain and stiffness in my legs was (is) worse on a morning and late at night. I described it to the doctors as a lazy persons illness as it's not as bad if I sit around watching tv or not doing much...but it's extreme if I exert myself...like a battery that gets flat from use!
I have had arms full of blood tested...have had an ultrasound on my liver, an MRI,a muscle biospy, two muscle conductivity tests, visits with rheumatologists and now my third neurologist! In between all this there has been countless visits to my local gp...I am convinced that most of the doctors think that it's in my head!
I have a visit on the 14th of this month with a neurologist to get the results of the muscle biopsy.... According to the neurologists they have excluded MS, muscular dystrophy and MND as there's no muscle wastage or lack of strength.
Just to compound the story I have to add that there's something that has made things better. I mentioned to my gp that the symptoms were less severe when I was sick with a cold or flu...she latched on to auto immune diseases and prescribed predsolone which is an immune supressant and anti inflammatory. The solone takes away the stiffness and cramps, puts a spring in my step...but only for a while. The heavy legs, the aches behind the knees and the refusal (best way to put it) of the legs to listen to the brain to walk faster and become less heavy wears off on an evening and all the problems return. It also only works for a while before the dosage has to be increased and doesn't remove the cramps.
Anyway...do you reckon it's PLS?
All the tests are clear...I am the sickest well person around...sorry...I know how many people are suffering and to what extent but everything says that I am fine.
I would really appreciate any comments. I have to admit that I actually felt relieved to find something that fitted my signs and symptoms. Is it normal to go through such a long period of tests before PLS is diagnosed?
Thanks....
Shaun