Old 11-16-2017, 10:11 AM #1 (permalink)
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Default Another symptoms thread

Hi folks,
Another one for you.
I'm 34, male, from U.K.

I have read the recommended posts before putting this up and just wanted to get thoughts.

Like seemingly the majority of those who are diagnosed with ALS, I had an innocuous bout of 'foot drop' in my right foot about 7 weeks ago. I felt weakness in it for about a week before it finally stopped working. At this point I could only move my toes, both underside and top side of the foot just not functioning. I could walk on my toes, but not my heels and resistance to downward pressure very, very minimal.

This carried on for several weeks before I went to the doctor who referred me to the neuro, with the main fear being MS as I was also having pins and needles in the foot and wrist and waking up frozen to the bone at night.

The neuro did a physical exam of me. He noted no fasciculations or significant atrophy.

I told him about my fear of ALS and his exact words were 'I see no obvious signs of MND (ALS) whatsoever and so you don't need to worry about that'.

This settles my nerves a lot and also in the next few days, the underside of my foot came back to life. Almost overnight and it improved my gait to where I don't trip or get it caught as much as I did prior to this.

However, the top part of the foot has still not budged at all and I am feeling lots of twitches. This could well be from stress and anxiety as I am so worried about this and only get about 2-3 hours of poor quality sleep per night and really bad nightmares when I do. I am no longer having pins and needles in the foot too which worries me.

I am concerned that perhaps the underside of the foot is not really involved in the dorsiflexion process and perhaps this is why it has come back to life? Could the neuro really be so sure it's not ALS after just a physical exam?

Any thoughts or comments would be greatly appreciated and thank you so much to anyone who contributes. Neil
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Old 11-16-2017, 11:40 AM #2 (permalink)
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Default Re: Another symptoms thread

The presence of pins and needles, even though it resolved, argues against ALS, as does the improvement in gait. There are so many other things this could be including a pinched nerve.

Did the neurologist offer you any kind of followup or order tests such as MRI, EMG, nerve conduction studies? These would be helpful in clarifying the underlying cause.
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Old 11-16-2017, 11:55 AM #3 (permalink)
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Default Re: Another symptoms thread

Hi Karen,
Yes, I had an MRI yesterday evening, just on the brain, nothing else. No results back as yet.
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Old 11-17-2017, 08:02 AM #4 (permalink)
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Default Re: Another symptoms thread

I also wanted to add that the footdrop happened in the 1st weak of October. About 4 weeks later, I have beloved a feeling of muscle fatigue in both arms to the same extent, from simple things like brushing my teeth or eating a cereal.
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Old 11-17-2017, 01:31 PM #5 (permalink)
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Default Re: Another symptoms thread

Does everyone agree with the neurologist that I don't need to worry? The thought of going for an EMG is terrifying me.
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Old 11-17-2017, 02:40 PM #6 (permalink)
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Default Re: Another symptoms thread

If your neurologist told you not to worry, thatís great news; I wouldnít worry. Worrying just leads to anxiety and is not in your best interest.

If your symptoms persist or progress, you can always return to the neurologist and have an EMG later if there are concerns. Sounds like a plan.
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Old 11-17-2017, 08:50 PM #7 (permalink)
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Default Re: Another symptoms thread

Yes, Neil. I think we would all agree you have no reason to worry about ALS.
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Old 11-18-2017, 06:33 AM #8 (permalink)
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Default Re: Another symptoms thread

Okay, thank you.
Just was surprised that the neurologist could be so convinced after just a physical exam when he can see and diagnoses clinical weakness in my foot, following foot drop. He's also sent me for an MRI and also an EMG will need to be arranged to check the extent of nerve damage in my foot. But I guess he knows what he is looking for when he does the physical exam.
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Old 11-20-2017, 08:41 AM #9 (permalink)
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Default Re: Another symptoms thread

Worried now, really worried.
Bordering on terrified.

Probably sounds stupid, but I am really, really hoping my MRI results come back with an MS diagnosis. It's seems like the only truly viable alternative.

The fasciculations are relentless now. I can also see them in my right calf. But they are all over my body, night and day. Bizarrely, the one place they don't seem to be is the actual spot of weakness itself, in the topside of my foot.

I am worried the neuro appointment was too early as these were nowhere near as bad at that point and certainly not visible, although it was only 1 week after that they got bad.

I can still drive, run up and down the stairs etc, but I don't know if this means anything. I still can't move the topside of my foot or walk on my heels.

The neuro had suggested it was from crossing my legs awkwardly, which I had been doing until recently, but 7-8 weeks with no feeling at all on the topside seems extreme if it was caused by that.

I am now feeling a bit of pain and discomfort on the right side of my knee. Possibly as it's having to compensate for the lack of movement in my foot.

I am worried because nearly all the threads here are from people who clearly do not have ALS and have symptoms which are not even remotely close to ALS. I feel like all of mine are, particularly the clinically diagnosed weakness in my foot.

The limbo is awful. I am doing my best to avoid google etc... but I just can't put my mind at rest. I have no pain in my back and had no serious or traumatic injury. The foot drop happened completely out of the blue. To me at least, things look like they are seriously pointing in the ALS direction.
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Old 11-20-2017, 10:56 AM #10 (permalink)
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Default Re: Another symptoms thread

I’m sorry for your fears. Maybe seeing the neurologist again and getting that EMG would help provide clarity for you. I don’t think anyone on this forum can really do anything more to help you.
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Old 11-30-2017, 12:13 PM #11 (permalink)
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Default Re: Another symptoms thread

Hi folks. I thought it was worth posting again for any other folks who may see this thread and be in a similar position as me.

As was stated previously by other forum contributors, the problem I had/have with my foot is not ALS. It has now significantly improved and I can now just about walk on my heels. I am being referred for physio and the ENG is not being deemed as necessary.

I had convinced myself this was ALS. I could not convince myself that it could conceivably be anything else. Especially when it took SO SO long for improvements to come about. Clearly nerves can be damaged doing the most innocuous of things (in my case, sitting awkwardly) and they take a long time to heal. If this thread even helps 1 other person going through the 'limbo' then it has been worth posting.

Certainly the whole scenario has brought MND/ALS to my consciousness and I have made a donation to this forum as a result. Just 1 word of advice with that. When trying to make the donation, it was very difficult to do so without logging into PayPal. I cannot remember my PayPal password and thus could not log-in. Eventually I was able to make a one-off donation by card, but thought I would raise it here as potentially there will be others in the same boat who do not have the patience for it and possibly miss out on donations.

Take care everybody and thanks to those who responded to me. Neil x
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Old 11-30-2017, 01:35 PM #12 (permalink)
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Default Re: Another symptoms thread

Thank you for circling back to us, Neil. I am sure that your words will, as you say, help at least one person.

Best,
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Old 12-27-2017, 08:55 AM #13 (permalink)
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Default Re: Another symptoms thread

Hi.
Okay, I may have lulled myself into a false sense of security and so I'm back.

Perhaps it wasn't the best idea, but I went on to just answer just to tidy up a few concerns and the physician seems to be contradicting everything I have ever read about ALS, including on here.

The foot drop I discussed earlier on this thread seems to be resolved. Full range of motion back as far as I can tell, even able to run on it.
However, the fasculations which arrived not long after it happened have not gone away and are indeed a lot worse.

This was what prompted my visit to just answer. The physician now says that foot drop can completely resolve itself in the early stages of ALS! I was shocked to read this! As far as I was led to believe, things 'never improve' and this kind of recovery would not have happened if ALS had been involved! According to him it's quite regular for symptoms to attack 1 part of the body and then resolve itself for a while. I have never heard anyone say this before!

And so now I have the issue of previously undeniable muscle weakness along with chronic fascilations (particularly in the affected foot/leg) and also random body jerks.

Has anyone ever heard of things 'improving' to he point of fully resolving itself in the case of ALS? I'm now back into a real panic again now.
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Old 12-27-2017, 11:53 AM #14 (permalink)
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Default Re: Another symptoms thread

Foot drops and other functional losses that occur due to ALS donít resolve. In fact, they only get worse. Sorry to say your doctor misinformed you. Thatís good news for you. You donít have ALS. No need to hang around here.
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Old 12-28-2017, 12:41 AM #15 (permalink)
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Default Re: Another symptoms thread

Hi Karen,
I really, really want to believe that so much, but I am just having endless issues.

For the last few days I felt a stiffness in the muscle above my knee and into my thighs, both left and right legs. As the day went on today, I could feel them getting heavier and heavier until I had this overwhelming burning ache and felt really unsteady on my legs. I could still stand and walk but it was causing huge fatigue and weakness to the muscles and they felt desperate for rest. And now the relentless twitching has also moved to these muscles too. My legs never stop moving and the body jerks are getting more aggressive again. Even after 5 hours in bed, my thigh muscles still feel very weak.
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