Muscle atrophy

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Jclay

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I am a 31F with severe atrophy in my lower left leg. It looks like it's just bone. I have always been a bit clumsy, so tripping isn't new for me. Does atrophy come before or after weakness? I was in the hospital in February for muscle weakness and had no atrophy and now I do. I'm worried it's als.
 

Nikki J

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Weakness precedes atrophy in ALS but in multiple other diseases too. If you were hospitalized due to clinical ( doctor confirmed )weakness in February surely you had tests and follow up? You need to go to whatever doctors are caring for you and take it from there
 

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Hi J,

I'm posting your last thread from a couple years ago here for folks to reference as well, as it seems this has been a worry for you for 4+ years. You were under the care of a rheumatologist at that time- are you still seeing one? You were also referred to a neuro. What do they say?

 

Jclay

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I was worried then and the Neuro reassured me that I was okay and I had some diagnosis that explained my symptoms at the time. I have had zero worries since then. Back in February of this year, I woke up one day with weakness in my lower extremities. It was clinical weakness and my gp sent me to the hospital. The ER docs agreed and I got a spinal tap with showed no ms or gbs (what they were most concerned with) and it turned out that after a week in the hospital, that I had some severe mineral deficiencies. We fixed those and it helped a bit and the neuromuscular doc in the hospital wanted me to do an EMG and biopsy to check for nerve issues. I didn't have them because a family emergency arose and I was out of state for a couple months. I felt a bit better and wasn't too worried. Now with this terrible atrophy, I worried that I may have something more sinister going on.
 

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If you have "terrible atrophy", what is it that you cannot do? Atrophy comes after a muscle becomes useless and, in the case of leg onset ALS, one cannot go up on their toes or back on their heels. They don't get tired from doing that, nor is it difficult, they simply cannot do it. Not even a little bit. As a result, the lower leg then starts to atrophy.

So, again, which muscle function has died that has caused this "terrible atrophy"? What can you no longer do that you once could? You have no signs or symptoms of ALS, and nobody but you thinks you do, so I'm wondering how you came to the conclusion you have atrophy and a leg that "looks like bone".

I apologise for sounding harsh, but I want you to look objectively at what makes you think about having this disease over a four and a half year period. Whether you have consistently or intermittently, the fact that you don't have this disease yet won't stop thinking this, should give you a pause for concern.
 
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affected

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Wow sounds severe, what does your doctor say about this terrible atrophy development?
 

Jclay

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I was trying to think about the best, most thoughtful reply to this and it's been difficult. I have had actual clinical weakness for months in my leg as determined by a neurologist. I just noticed the "terrible atrophy" and was seen Friday evening by the neurologist at the clinic I go to. They agreed with me having "severe atrophy" and admitted me to the hospital over the weekend to run a couple of tests. We have ruled out MS, stroke and traumatic injury. My neurologist has now said they are thinking it could be a motor neuron disease and he discharged me and I see him again this Friday to set up the proper testing, he said I need EMG and NCS and a needle biopsy. I am scared and had come here for advice and support. Instead, I was mocked and told that no one thought I was sick except myself. I haven't been worried or sick for four years. I had concerns (different ones) years ago that were unfounded and I have lived my life happily and without fear until now. There is no double Jeopardy in healthcare. You can see the same specialist with fears more than once.

I cannot stand on my toes on my left leg. Can't do it at all. If that helps. Didn't include that because my doctor was aware and I was just hoping for support. I realize that many people come on here and I'm sure it's annoying. However, this forum should not be permitted if it's an inconvenience to those answering questions. Just get rid of it and allow for only those who have a diagnosis. It will take away stress from both sides and no one will walk away feeling unheard, bullied or stupid for their concerns. I have two young children and am facing a potentially devastating diagnosis in the near future. I will not waste your time on here again and focus on my family and living in the moment. I wish you all the best if you've been diagnosed and if you're someone worried, don't give up if something is not right. You deserve to feel well and be heard by doctors.
 

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I am sorry . My question to you was very genuine as weakness resulting in hospitalization merits much testing and there had been time for it happen. It didn’t happen as planned for you due to family circumstances as you explained later.
of course your circumstances are worrying and I hope your upcoming tests give an answer. A treatable one of course is what you want but getting an answer of any kind can at least let you move forward

good luck
 

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I, too, apologise for you feeling mocked; that was not my intention. I am confused, as I have rights to be given your illness and timeline, as to why the neurologist could not see ALS through a clinical exam, through EMG testing, and through your symptoms just a few months ago, even with a one week hospital stay, and now they can? Were you able to get in to see a different neurologist? What changed from then until now in terms of the doc seeing a possible MND? Was he a neuromuscular specialist? I am genuinely asking because thorough stories of timelines and symptoms help other posters on the forum, as well as forum members. For myself, I was more than confused about how you thought you had an MND because you did not share any of this information in your original post. Had the members been aware that you had function failure, the replies may have been given in a more understanding way because all the information would have been initially provided. Again, my apologies.

Please do stop back Friday with what the neuro has concluded along with your EMG report with your bio details blurred. Again, details help other posters who have worries about ALS and what symptoms look like etc.

Take good care and stop back Friday.
 

affected

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I too am sorry and can only suggest that if you come here to ask if your symptoms sound like ALS that you give us detail about what failures you have and what your doctors are saying. Then we can be constructive in our replies.
Let us know the EMG results for sure.
 
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