Worry about symptoms

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izabela

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Hello Everybody!

I`ve been watching ths forum for few months and was hesitating with posting, since I didnt want to take your time and was hoping that my symptoms will disappear. Unfortunately they havent, so I would like to ask about your opinion and I thank you in advance for your answers.
Im 46 year old female. I live in Germany but I couldnt find here as good and active forum as this one.
I`ve been having fasciculations for 6 years now (there were mostly in my legs but also everywhere else). At the beginning there was a fear of ALS, but after a year of twitching and no other symptoms (just perceived weekness) and few EMGs I was diagnosed with BFS. So, the years went by and I forgot about fascisculations and didnt worry about them anymore (they were still there, but I knew it was just BFS).
Beginnig of June this year I`ve started feeling kind of weekness/thiredness, which is difficult to described (kind of by breathing, first I thought it was because of the heat), slight pain in my thighs continuously and more fasciculation (Im not sure if there were really more, maybe Ive started paying more attention to them again). After a month I went to neurologist to check it. He did strength test and EMG on my legs and everything was ok.
In September I went back to him, since my thiredness became more and I started feeling also continuosly slight pain in my right arm. He repeated EMG (also in my arm in two places) and again everything was ok.
Couple weeks later Ive started feeling even more thiredness, but now Ive localised it. I think it is comming from my shoulders (shoulder blades) and my upper back ( Im having twitches there too). Lifting my arms is thiredning when I lift them for bit longer time or if I hold something bit heavy in my hands and Im having slight pain in my shoulder blades very often, especially after carrying something heavier (but not very heavy). When I carry a heavier handbag it becomes more. Im normally very strong and carry many heavy things without problems. But now it is different.
Ive read in the stickees, that difficulties with lifting arms could be a sign of ALS. But what is meant by these difficulties? I can lift my arms and do all the things with my hands, but my arms feel thired quickly and I have almost everday slight pain in my shoulders. It doesnt happen from day to day that one cannot lift his arms with ALS, does it? There is probably weekness by lifting them, before you cannot lift the at all or?
Ive also read that ALS can start in torso or lung muscles. Ive checked my lungs (FVC, CO2), since I thought the thiredness might be comming from lung muscles, and the results were also normal.
My question is: should the EMG done in my arm (I think it was in biceps, deltoid and forearm) have shown any signs if only my shoulder blades (or torso muscles) were affected? Does torso onset means that also lung muscles are affected?
Im worried, since my symptoms progressed over last 4 months and Im a mother of two young children. Should I go back to neurologist to check my torso (or my shoulder blades) muscles?
Thank you very mucht for taking your time to answer.
Izabela
 
I would see a physio about your shoulders/upper back. As a mother of young kids, you probably lean over a lot, reach a lot, and lift a lot. These activities, especially if you don't stretch enough, can cause ongoing issues.

Yes, the EMG would have shown damage in nearby muscles, and the deltoid is part of the shoulder joint.

Torso onset per se is unusual. ALS usually presents in the bulbar muscles or limbs. But you don't report symptoms of any of these, and you had two normal EMGs. You don't have ALS.

Best,
Laurie
 
Hi Laurie,
thanks for your reply. My kids are not that young. They are 8 and 12, so I dont have to lift them or lean over anymore. I used to do it when they were small and didnt have these problems. Ive also been to physio frequently in the last months, but it didnt help.
And the thiredness in my shoulders and upper back became more and its been there for four months now.
But it is reasurring, that you think EMG would have shown some damage in my arm, if torso was affected. Thanks once more for your reply.

Izabela
 
Several clean EMGs and from what it sounds like, a 6 year worry about a disease you do not evidence having. You have nothing in your post that even remotely suggests ALS. For your peace of mind and enjoyment of life, I do hope you can let your worry about ALS go, once and for all.

Take good care and be so very grateful for your life and health. You have what many here would be envious of, your physical health.

Take good care.
 
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