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Veryscaredmummy

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Hi.

I'm new here but I've been following for a while.I've not wanted to post before as I know many of you have real and diagnosed problems, and I did not want to waste your precious time.

My anxiety however is getting difficult to control (I am signing up for counselling while I wait to get to the bottom of my physical symptoms) and I figured this part wouldn't exist if you didn't want to help people that are in limbo!

About 9 months ago I noticed light fluttering in my stomach along with some pain and bloating. A short while after I started getting fasciculations everywhere (feet,calves,thighs,stomach,lip,eyebrow etc) but they were most prominent in my calves and thighs. About the same time I noticed asymmetrical muscle loss in my right thigh, hip, and buttock. I also had some cramp, generalised fatigue, and was finding my arms were tiring from driving and drying my hair.

At this point I went for a private neurology appointment and had an emg and nerve conduction study of the feet,calves, thigh,abdomen, arms, and lip.Only finding was widespread but "clean" fasciculations. Neurologist was unconcerned by somewhat fast reflexes and the muscle imbalance and advised PT.MRI head and c spine clear.numerous bloods clear.

I have been seeing the pt who has recenly corrected a rotated pelvis. However in the 6months since seeing the neurologist I have lost muscle from head to toe (at least 2cm more on thigh according to pt), have intermittent pains in my right shoulder,arm,and wrist, accompanied by weakness (not clinical), and more focal atrophy of Palm and wrist, Tmj symptoms with muscle loss of right side of face, and sharp intermittent rib pain and difficulty catching a breath particularly when sitting or lying down. I feel weaker all over the right side and fasciculations, cramp, and intermittent stiffness persist. I have also had intermittent brief periods of numb hand/foot with difficulty moving toes and fingers.My family doctor and PT acknowledge the muscle loss/imbalance and I await a further neurobiology appointment and MRI of neck down.

I know that pain doesn't typically feature in ALS but it is not the dominant feature of what I am experiencing,and I cannot find anything else that explains the progressive asymmetrical muscle loss from face down,fasciculations, and somewhat brisk reflexes. Any ideas? I would greatly appreciate your wisdom at what is a hugely difficult time.

Thank you
 
It's good that you're seeing your family doctor. You're doing all the right things.

Counseling will be good. I suggest an appointment with a full-fledged psychiatrist because they know very well how much the mind can control the body. The psychiatrist will tell you what you should do.

Since I'm not a doctor, I don't have any idea what it could be. I also don't see ALS in there. The muscle loss can come from other conditions. I wouldn't worry about ALS while you're working with your doctors.
 
I think Astugi misread your reference to PT as a psychiatrist and not a physical therapist. Personally, this doesn't sound like ALS to me either. Remember I'm not a doctor.

There are numerous -- and treatable -- potential causes to your issues. Getting the MRI and the follow-up appointment with your neuro will likely lead you a solid diagnostic path. But truly, I don't think you should be concerned with ALS. Best wishes for your upcoming MRI and neuro appointment.
 
Thank you both so much for taking time out to reply to me. You 're right Life enthusiast I did mean physical therapist (it was a bit ambiguous of me!).

I definitely take comfort from the fact that neither if you see ALS in my symptoms. I do not want to see it myself.I would like to put my muscle imbalance/atrophy down to the rotated pelvis which in turn could be causing thoracic outlet syndrome, but then I don't understand the muscle weakness/loss in my face or the fasciculations and cramp everywhere.

I will start the counselling and hope that when I manage to get a neurology appointment that my fears can be put aside. I am a mum of 2 very young children so the bits of comfort I can take from this forum are invaluable in helping me to maintain normality for their sake.

Warmest wishes
 
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