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Mick7979

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Hi everyone.

I just want to start by saying that I don’t want anyone to reply that it takes a lot of effort to do so . Save your energy. I don’t want to be a drain on anyone.

With that out the way, I not so long ago posted a thread that I asked to be deleted as I felt my concerns were unfounded.

I have now been to my doctor and shown him my muscle wastage on my right leg, my fasciculations on my left leg and now getting tongue fasciculations as well as a few falls , and a feeling of plantar fasciitis under both feet and lots of cramping and tingling as well as difficult picking up things like coins off of tables etc. (I know als normally attacks 1 side first) and he was quite horrified at the size of my right leg. He said it was about half the size of my left, and that it definitely wasn’t normal and needs to be investigated further.

He looked at my tongue and said he noticed no atrophy , although I have had a weakness and I mean real weakness of voice, it just drops out, I have constant hoarseness since getting a endoscopy done 8 weeks ago that hasn’t improved .

My gp has now referred me to have a ct scan of my lumbar spine (is this test normal and will it show anything) due to muscle wastage on right side and back pain as he put it on the form. That will be done today at 2pm.

He has also faxed off a referral to a neurologist to see me, but I contacted them and they said they will contact me in a few days to make an appointment. Nothing I can do until then other than get the ct scan done.

I guess I’m asking will that show up anything if it is ALS?

Thanks, and please don’t reply if it takes any effort. Just a bit scared now .
 

Atsugi

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Mick, let me simply describe something:

In ALS, something (nobody knows what) attacks the nerves in the brain which control your muscles. Prior to this attack on your nerves, there is no ALS, There aren't any feelings or sensations, swelling, atrophy, or weakness or anything. That's because the first thing ALS does is attack those motor nerves in your brain.

With the nerve unable to activate the muscle it is connected to, the muscle, of course, doesn't work. Later, after the muscle has been laying around totally useless, doing nothing (paralyzed), then it starts to lose its tone, its fullness, and its shape. Then it gets thinner and thinner. That's the kind of atrophy that ALS leads to.

What you describe seems totally different, so it is not ALS.
 

Mick7979

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Thank you for the reassuring words .

They couldn't have come at a better time as I have just had a big falling out with a family member over this. She couldn't grasp the fact that the doctor took 1 look at my leg and scheduled a lumbar ct scan for the right side of my body to check for muscle wastage and a referral for a neurologist to figure out what's going on, she just kept saying I bet you a million dollars it's not AlS. I tried to explain it's not what the results are, it's the fact that a doctor had 1 look and knew something isn't right that needs to be seen by a neurologist that validates my concerns were real, and she acts like it's all in my head. Not a very good support network if you ask me, at a pretty stressful time to be honest. Not that it's anything compared to those who have been diagnosed, but a little support right now goes a long way. Not being told "I bet you a million dollars it's not AlS" after you have just seen a doc that is clearly more qualified and concerned than my own mother.

Sorry to go on.

Just had the lumbar ct scan done and results may be back as soon as tomorrow although the lady taking the test seemed to think it won't show anything related to AlS, I believe the doctor asked for them to see if there is wastage going on on my entire right side of my body or just leg at this stage to give him a bit more of an indicator if what we/I am dealing with.

Neurologist appointment, not sure when that will be, waiting to hear back from them. But I will be sure to update when I get an update. (I really will lol, I hate when people say that and disappear as it may help someone going through the same thing and not finalising what the outcome is helps no one).

I really do appreciate you taking your time to reply.

Thank you.
 

Nikki J

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The CT will not show ALS. Your doctor is looking for signs of a spinal issue that might be causing your leg issues. If it is normal though it does not mean it is automatically ALS. Many of us had spinal imaging as one of the many tests that were done to look for a diagnosis. Here in the US it is usually an MRI rather than CT

Good luck
 

Mick7979

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Thanks for that.

So I guess I'm hoping the ct scan shows some abnormalities then that would account for muscle wastage, while being aware that if all comes back normal that doesn't automatically mean ALS.

Thank you.
 

affected

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Nikki in Australia they will do CT and/or MRI depending on what they are looking for.

Mick it's a matter of going through a process as there are so many things that could be causing your issues before ALS, so try to be patient and let the doctors do their job. Try not to jump ahead of them, they have a lot more experience to figure out what tests are needed and how to read them.
 

Mick7979

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Nikki in Australia they will do CT and/or MRI depending on what they are looking for.

Mick it's a matter of going through a process as there are so many things that could be causing your issues before ALS, so try to be patient and let the doctors do their job. Try not to jump ahead of them, they have a lot more experience to figure out what tests are needed and how to read them.

Thanks.

And I know I need to be patient. I don't have much faith in my gp as I have moved to a new area about 12 months and have struggled to find a decent gp. I initially went in a bout 12 months ago and they marked me as someone with severe anxiety and put me on 4 diazepam (valium) a day before even mentioning any of my symptoms. It was more to do with my IBS.

So I didn't dare speak up about these symptoms as I expected them to be like "just go home and have a valium you anxiety nut job". As a result when I trip, or drop soap repeatedly, and dishes slip out of my hands or a bag of chips just goes flying everywhere when I finally manage to open it, I just started using the throw away line "oh that's just my AlS playing up" as a coping mechanism . So I can see why people close to me are skeptical to take it seriously.

And when I finally decided enough is enough and went to the gp yesterday I fully expected not to be taken seriously and told to take a valium. But it was the exact opposite. He took 1 look at my leg and his eyes bulged out of his head and he said this isn't normal, when I mentioned the fasciculations and he asked if I had cramping or any tingling and I said yes he said we need to rule out things like ALS and ordered a ct scan and a referral for a neurologist .

So I'm glad I'm being taken seriously, and thanked him profusely and will be patient, but waiting to see the neurologist is not easy.

I know it's nothing to what you guys are going through, it's just a bit of my back story.

Sorry if it doesn't make much sense, I have just woken up and seen your reply and decided to reply lol, should wait til I'm fully awake before replying lol.

Thank you for your advice, and I am not going to jump the gun to the worst possible scenario. It just all feels more real now that I'm being taken seriously if that makes sense.

But thank you. And please don't go to any effort to reply. I don't want anyone spending an ounce of strength reassuring me or anything like that. Was just wondering what the initial ct lumbar scan test was for really, now that has been pretty well answered it's just a waiting game for the neurologist appointment.

Thanks again, I will update with whatever news I find out.
 
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Mick7979

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Ct lumbar scan results came back all normal. Not sure if that's good or bad. Waiting on neurologist now.
 
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