Old 03-23-2017, 09:32 AM #1 (permalink)
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Default Is this likely to be early signs of ALS?

Hi All,

My names Jay, I am from the UK I am quite young & healthy, early 30s (which makes alot of people dismiss the possibility of ALS). My problems started at Xmas time 2016 although I believe this has been going on longer than this now I think back. I have read quite a bit on the forum & the kindness and warmth of the community made me decide to post. I would like members opinions if possible. Apologies for how long it is but I didn't want to miss anything out.

The first thing I noticed was weakness in my right dominant leg, it was shaking when I would raise my leg to straighten it, having been a keen footballer (soccer player) and playing up to 5 times a week (and before all this I did have a powerful right foot) I knew something wasn't quite right but I put it down to the fact I had a couple of weeks off. So I trained hard in the gym to try correct it, this seemed to be working but then all of a sudden it stopped working, infact my leg would feel stiff and quite strange and it prevented me from playing.

Then I noticed the twitching, a very fine twitching on the right outer quadricep/thigh, it was almost hard to see but it wasnt something I had seen before and would only happen when I tried to straighten the leg. I saw my GP and he said to rest for a month and see what happens, I did this and of course the symptoms got worse in fact my whole side of my outer thigh now twitches when standing and if I try to run or walk it feels strange as though a rubbing feeling but no pain it feels as though it isn't working naturally, I kind of have to think about walking and how I stand. The last time I attempted to run I tripped up a few times but convinced myself to blame it on uneven ground and having not ran in a while. The leg can occasionally ache but this isn't something thats happening very often. It looks like the muscle is wasting and there are strange grooves and dents developing in the leg. At night time or when it was straightened it felt as though the whole leg was vibrating this made it difficult to sleep.

This has since got less annoying but unfortunately has spread to my right arm aswell, which seems to have a tremor almost all the time especially when out stretched or raised. And the weakness in it is quite worrying alot more so than the leg. At first I thought it was an old injury but things that were easy to me are now becoming very difficult. Lifting my son, holding a saucepan, kettle, even driving it doesn't feel right and seems to tire so quickly. I had a very close relative pass away with the same disease and she came to me with her earliest symptoms hoping I could shed some light on it with my sports background but I could only say trapped nerve at the time and apart from hers starting in the calf, it feels like dejavu.

I constantly feel tired and no matter how much sleep I have, the symptoms do not get any better.
At night time I also feel slight twitching in the exact same spot (right leg) aswell as different areas of the legs and there is a tremor in my back/spine aswell as my right arm (which is probably the worst part). This is consistent every time I go to bed. I wake up alot with numb fingers (outer fingers of the right hand) Also there appears to be atophy in the right tricep which I have only recently noticed. This explains the struggle of simple tasks I had been finding easy before. The left arm is alot bigger than the right and I am right handed. No muscle has completely stopped working yet or died but I feel they are not far off, especially the right arm. I understand time is more of an indicator but I'd rather know now if it is, so I can enjoy my life before I become debiliatated if I am heading down that path.

I have since seen a neurologist who checked my reflexes of the legs they were brisk. He then did an EMG test and NCS, MRI and blood tests. The legs were showing fast speeds in the NCS more so in the right leg and the right arm was very slow (the problematic one). He couldn't find any fasciculations as of yet but I don't have them that often more so at night or after I use the muscle sometimes. Its more of the fine twitching I have when using the muscle. The right leg seemed to show a fibrillation but he told me to relax and I turned my leg and it seemed to go? (possibly the needle moved). He never checked the right tricep only the shoulder. The blood tests were all fine and the MRI was clear as he put it. Since the tests my left leg has began to show signs of the same on the outer side but it seems to be aching alot more, something I've not really had with the right leg as much & as my symptoms have progressed he has decided to put me in touch with an expert in ALS, who actually is a firm believer that people get diagnosed too late with ALS and this causes problems for care and also limited time use of any medication that can slow it down.

I appreciate anyone who takes the time to read my post or comment & having been a person who has lost someone close to ALS I know all too well how awful this disease is. I guess I am hoping someone has had similar symptoms and it turned out to be something else, if not I will be becoming a permanent contributor on here.

Thanks again, Jay
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Old 03-23-2017, 05:09 PM #2 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Hi Jay. Welcome.

I wish I could diagnose you with something, but I'm not a doctor. No one should try to diagnose someone over the internet without examining the patient.

Did you get a copy of the EMG or perhaps a copy of the EMG report?
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Old 03-23-2017, 05:48 PM #3 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Hi Mike,

I kind of hoped you would reply. I have followed your story about your wife and it sounded just like the case with my Nan. I'm really sorry for the loss of your wife, truly heartbreaking. The fact you still dedicate yourself to help people on here shows what a good & selfless person you are.

I didn't get a copy or anything, I think it might be different in the UK. The neurologist said he didn't think it was ALS but he had no explanation for the symptoms & it wasn't his specialty. He did say if it is, that signs will probably show down the line with time, which is something I don't want to waste doing. Waiting on my own fate so to speak. And possibly wasting time to book family holidays and enjoy things asap. The fact things had progressed with my symptoms, he has decided to send me to his colleague who is supposed to be the best in the country and researches in bio markers for the disease to detect earlier diagnosis. So I'm definitely in the right hands.

I guess I came here in the hope someone had similar symptoms in the beginning and it didn't turn out to be ALS. Its the only hope I have for now. My right arm is just getting worse each day that is of major concern, its funny because the first thing I noticed was my right leg not my arm.

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Old 03-23-2017, 08:37 PM #4 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Hi
Who has he referred you to? With the fact that your NCS showed slowing they could be looking at something else as it is usually normal in als. You can ask to see your EMG report and they will usually provide it. Your neurologist should have written to your GP detailing the results of your visit with the EMG attached. They should have provided you with a copy of that letter, although it usually takes a few weeks from your appointment to go through. You didn't mention if your neurologist found clinical weakness in your exam, if he didn't that's good.

I know it's hard waiting around but very good that your neurologist is exploring all options to find out what is wrong with you.

Regards

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Old 03-23-2017, 09:40 PM #5 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Hi Wendy,

Thanks for taking the time out to reply. He has sent me to Oxford (John Radcliffe Hospital) to see one of the professors of MND/ALS there. Have you seen either of them before?

He couldn't find clinical weakness but without sounding rude he was an older chap and gentle, I was still strong compared to a normal or older person he would be used to testing but nothing like I was, the change has been dramatic especially in the right arm. And this was like 2 months ago he tested me. I was leg curling (using both legs at the same time) 100kg on quads quite easily just a month prior to all the symptoms last time I went I struggled on 40kg. My tricep strength (using both arms) was like 40kg to struggling at 25kg to having to stop going completely. I couldn't even tell you what I'd be down to weight wise now, my right arm struggles to hold my phone up and even a light saucepan is bending my wrist back so I switch to the left. I haven't seen the report yet to be honest I will try and find it as soon as I hear more.

The strangest symptom I've had this week is the aching. Constant aching in the left leg outer quad and even the right arm at times. I haven't had pain before really at any point so this is making me wonder what's actually going on.
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Old 03-24-2017, 01:18 AM #6 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Pain is good. Aching is good. Let's hope that every sign of weakness is accompanied by some real discomfort.

My wife's first symptom was classic ALS. A muscle in her foot no longer supported her. At all. No pain, no feeling of weakness. The muscle just didn't work anymore so she fell over.

Tell us what your doctor says.
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Old 03-24-2017, 04:30 AM #7 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Hi Jay
I don't have experience of the Oxford Centre I'm sorry, I was referred to the Royal Free in London, but The John Radcliffe does have a good reputation.

The doctors do take your age and general level of fitness into account when testing you for clinical weakness. Have they left you with a follow up visit? If things are getting worse it's worth going back to your GP to chase up and get things explained as to where you are in the diagnostic process. If they don't feel it's mnd then you need to ask them what they feel it might be and what route forward they are taking to find out. I formed a strong relationship with my GP and she was fantastic at pushing things forward.

When the specialists find you don't fit their area of expertise it's very easy for you to be discharged without a route forward, they don't tend to refer you on to another speciality. The only route you have is to keep going back to your GP for further exploration until you hit a solution.

Good luck

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Old 03-24-2017, 07:13 AM #8 (permalink)
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Default Re: Is this likely to be early signs of ALS?

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Originally Posted by Atsugi View Post
Pain is good. Aching is good. Let's hope that every sign of weakness is accompanied by some real discomfort.

My wife's first symptom was classic ALS. A muscle in her foot no longer supported her. At all. No pain, no feeling of weakness. The muscle just didn't work anymore so she fell over.

Tell us what your doctor says.
Fingers crossed Mike. I will keep you informed after my visit.
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Old 03-24-2017, 07:19 AM #9 (permalink)
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Default Re: Is this likely to be early signs of ALS?

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Hi Jay
I don't have experience of the Oxford Centre I'm sorry, I was referred to the Royal Free in London, but The John Radcliffe does have a good reputation.

The doctors do take your age and general level of fitness into account when testing you for clinical weakness. Have they left you with a follow up visit? If things are getting worse it's worth going back to your GP to chase up and get things explained as to where you are in the diagnostic process. If they don't feel it's mnd then you need to ask them what they feel it might be and what route forward they are taking to find out. I formed a strong relationship with my GP and she was fantastic at pushing things forward.

When the specialists find you don't fit their area of expertise it's very easy for you to be discharged without a route forward, they don't tend to refer you on to another speciality. The only route you have is to keep going back to your GP for further exploration until you hit a solution.

Good luck

Wendy
Thanks Wendy. I don't think I have a follow up visit to my first neurologist. I did ask him several times if its not MND/ALS then what is it, but he had no answers. I think this is why he referred me. Things just seem to get slightly worse each day and that's what concerns me, there seems to be no improvement at all. Hopefully the professor can explain more on what he thinks is going on, I guess until then it's a waiting game.
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Old 03-24-2017, 08:17 AM #10 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Hi. The doctors at the Oxord Centre are both well known and respected and very nice. I have not seen them as a patient but did visit the Centre as part of their research on MND. You can certainly trust their opinion.

You may have already seen this link
Oxford MND Centre - Oxford University Hospitals

I see they put in red a notation that being referred does not necessarily mean you have MND. I hope that is the case with you

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Old 03-24-2017, 11:04 AM #11 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Hi Nikki, thanks.

My neurologist doesn't think it's MND but has no explanation for it. I think he has sent me hoping they will say it isn't and for them to confirm it. Each day as I worsen though I find it difficult to believe it isn't. I hold on for the hope that it is something else. The aching in my left leg has gone today although it did have fasciculations pretty much all night. I find my symptoms are far worse at night time, I don't know if this is something people with MND experience.

I have decided that I will most likely stick around on here even if I am given good news. People have been more than helpful with me and if I can assist in helping others too I think it is important I do.
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Old 03-24-2017, 01:19 PM #12 (permalink)
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Default Re: Is this likely to be early signs of ALS?

I know this is slightly off topic from my original post but it is still relevant. Has anyone with ALS/MND tried cutting glutamate from their diet almost entirely? I have read up a lot about it since and how much is in our foods (MSG) and which foods produce it naturally. Personally I've been trying to avoid all these foods the past month just incase I do have it. Anyone have any thoughts on this? I know Riluzole tries to block glutamate but how effective can it be if you are constantly consuming it in your diet.
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Old 03-25-2017, 11:37 AM #13 (permalink)
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Default Re: Is this likely to be early signs of ALS?

I've heard that if a PALS is diagnosed soon and they start taking Riluzole regularly, a person might expect to add a few months to their life on average. Since longevity at diagnosis averages 2-5 years, 2-3 months seems significant.

At the risk of posting total BS, let's make a hypothetical case of a PALS with a linear progression. At the time of diagnosis, she had a useless leg and a weak hand. On average, she can expect 42 months. She takes Riluzole daily for all 42 months. Hypothetical result (in my wild imagination): 15 months of cane, walker and wheelchair becomes 16 months. 24 months of power wheelchair becomes 25 months. 3 months of bedbound becomes 4 months. I say again that this is totally my fantabulous way of imagining the "average" life extended by Riluzole.

Lots of things to consider.

Glutamate: Isn't that the stuff that makes food taste good? If I had a terminal prognosis, I would eat whatever I wanted whenever I wanted. Start drinking alcohol again, and enjoy all I could.

But that's academic. No one has diagnosed you with ALS. You probably have something else.
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Old 03-25-2017, 05:30 PM #14 (permalink)
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Thumbs up Re: Is this likely to be early signs of ALS?

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I've heard that if a PALS is diagnosed soon and they start taking Riluzole regularly, a person might expect to add a few months to their life on average. Since longevity at diagnosis averages 2-5 years, 2-3 months seems significant.

At the risk of posting total BS, let's make a hypothetical case of a PALS with a linear progression. At the time of diagnosis, she had a useless leg and a weak hand. On average, she can expect 42 months. She takes Riluzole daily for all 42 months. Hypothetical result (in my wild imagination): 15 months of cane, walker and wheelchair becomes 16 months. 24 months of power wheelchair becomes 25 months. 3 months of bedbound becomes 4 months. I say again that this is totally my fantabulous way of imagining the "average" life extended by Riluzole.

Lots of things to consider.

Glutamate: Isn't that the stuff that makes food taste good? If I had a terminal prognosis, I would eat whatever I wanted whenever I wanted. Start drinking alcohol again, and enjoy all I could.

But that's academic. No one has diagnosed you with ALS. You probably have something else.
Good point Mike
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Old 03-27-2017, 01:33 PM #15 (permalink)
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Default Re: Is this likely to be early signs of ALS?

Update: today I saw the Professor at Oxford. After several basic tests and checking me over he said he didn't think it was MND but explained to me that he couldn't say for certain. He actually had a conflicting view on EMGs he said he didn't actually believe they were that great for diagnosis as they are only 60% accurate and didn't believe it was worth having another just yet (I didn't ask for one by the way). He said he could do the test for the MND gene but didn't think that would do me any favours especially if I tested positive for it.

He has asked to see me again in 2 months time, continuously for the ongoing future. But, if things drastically progress before then to ring up and he will see me asap. He basically said it was a waiting game but for the mean time he would be surprised if it was MND.

I guess that's it for me now until the next two months. I still can't play football nor go to the gym without making things worse so will have to keep myself busy elsewhere. I will stick around but don't think I'm able to post on other threads so not sure what I can do. Thanks for everyone that's replied to me thus far since my original post.

Jay

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"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

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