Please if anyone can help me with their opinion

[jbear]

Hi,

I haven’t had a diagnosis of anything yet, but ALS or some form od MND has been briefly thrown up by my GP so while I am awaiting my neuro app I thought I might post my story and see if anyone on here has any ideas.

About 12 months ago I rolled my right ankle while walking, it was okay but after that I noticed it was sore a lot of the time and felt weaker than usual, for example it rolled a lot and I had to be careful going down stairs as I felt like it may roll and I would fall, which did happen once embarrassingly. Then I started to notice that my whole right leg would get fatigued very easily after walking and sort of burn, I also noticed that instead of going straight I had started throwing my foot to the side and kind of side sweeping it to the front, unsure why this is happening and it isn’t to noticeable to others unless I mention it.

Then I noticed that I wasn’t using my pointed finger to type I had swapped to my middle finger on the right for unknown reasons and when I write that finger would get very sore and cramped. Then I was getting very clumsy with my right hand and felt like I couldn’t hold a cloth properly to wipe the bench or wash the kids hair, when brushing y teeth that arm would fatigue very easily.

I did try and brush all of this off and not think about it but now I have noticed that the muscles in my right leg (calf and side of my thigh are atrophying and also my right arm the muscles in it are smaller than the left) the muscles in my back the right side is a lot smaller than the left, also in my neck the same, right is smaller and I don’t know if this is going to sound weird to anyone but I also think the muscles in my face are shrinking? My tongue looks okay so far but another weird thing is my eyes they feel like they have become flat…..or sunken back into the eye sockets. The past few weeks I have noticed actuall weakness in my leg and arm not much very slight but it is there.

I know that sensory things are not part of ALS but I do at times get pins and needles, numb patches, sore joints, when lying or leaning on my limbs they go dead a lot.
Does anyone have any thoughts, does this sound like typical ALS or MND or more like something else, this is going to drive me mad waiting for 3 months to get into a neuro. I have had MRI without contrast and it was fine.

Replies would be greatly appreciated as I am feeling very alone and scared at the moment,

Thanks Jay

 

[Rami]

Hmm, not quite sure why your GP suggested ALS and then got you an appointment to see a neurologist in three months. The way I see it, is if the GP was that worried it was ALS they would have got you a quicker appointment.

 

[wright]

That doesn't sound a thing like ALS. ALS doesn't present itself in such a global fashion simultaneously like you have shared; it typically starts in a particular region of the body and then march from there. I can't definitively sit here and tell you that you don't have ALS but from what you have shared, it sure doesn't sound like it to me. Too many things (including your sensory issues) point away from it. I hope that helps calm you.

 

[Flip4it]

I haven't been given an official diagnosis but a couple of things I'm wondering. Is there atrophy in all areas that you experience weakness? For example, your hand? Are you experiencing any muscle fasciculations? Also, did this start in one area and then move to the other areas? In my case, my face is very atrophied and noted by doc's. I even have a dent in my forehead (that I hate). Can you smile normally? Is there any atrophy in your neck? If your answer is yes, get to a GOOD neurologist. You are your own best patient advocate no matter what your condition is. I hope you don't experience the horror of physically deteriorating to point that I'm at before getting a doctor's attention and being shuffled around. Put your foot down if they start doing this to you. I hope you don't have ALS but there are a lot of other neurological conditions that need attention as well. Good Luck to you. I recommend taking photograhs in those areas of your body to use as a comparison if your condition worsens.

 

[Luke]

Some of what your describing is similar to my first signs of issues over six months ago and doctors still don't have much of an idea what's going on with me, so get used to the waiting game. Frustrating I know, but there are many things that could be causing the symptoms so they must do lots of tests. Also, the way the symptoms progress (or not) can help gguide the diagnostic process, and that can only be observed over time. Maybe you could get on a short list for a sooner appt. good luck and stay positive.

 

[Rami]

Well I am not quite sure how you GP gets off suggesting you MND. I mean the GP really would not have the extensive back ground knowledge to do this. Plus the fact that you have not had, (or maybe you have but have not mentioned) an EMG or NCS makes it even more appaling. Plus if the GP thought it might be MND you would think the GP might be more proactive in getting you an earlier appointment. Perhaps it might be useful to go see another GP they might get you an appointment quicker.

 

[Rami]

Okay my bad, clearly I need to find the specs. I mean i could have sworn I'd already commented the same general thing on this post not see it. So sorry for that. Anyway here's another but of reassurance/advice try not read to much into your symotoms I mean yeah fine take occasional note of the fact that your arms feel tured doing basic things or you foots doing whatever but don't constantly look for things or obbsess over muscle size it will send you mad if you hsve to wait three months. Also falling down the stairs once, envy!