2nd thread

Gerbera

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I have now seen a neurologist and GP whom both took all the possible blood tests (thyroid, parathyroid, calcium, lyme, you name it) and nothing was found. Neuro spent almost an hour with me and was seemingly upset by the treatment I've had so far. She said I should've been sent to at least MRI immediately the first time I came to look for help.

Neuro found athrophy in my shoulder/shoulder blade area. This was a surprise for me, as I haven't had any problems with that area, I thought at first. But now to my distress I remember that during the time my fasciculations and cramps in my feet and legs started, I wasn't able to carry my own old back bag when hiking. It felt like it's going to crush me. We concluded that it was somehow pinching some of my nerves. I took my spouse's far heavier back that sat differently and it was ok. I was, however, weak during the whole hike. Me, who has the will power of an elephant. But yes, fasciculations are not als, and als don't feel, so no more on that.

Then she found athropy where I've been symptomatic, on my left foot. The arch bit on the inner side is seemingly thinner, there's a split or a cave in the middle. My right is plump and healthy looking. But the weirdest thing is that I have no lost functions there. I can do anything with my foot. It has just been stiff (what I called as "alien" in the beginning), super stiff.

I've slurred my words, but this does not happen all the time. But when it does, there's no question about it. "Did somebody say something". No, a group of people laughed their pants off when it happened. I was of course scared to death. "R" is most effected.

Neuro brought up MND as I have no sensory symptoms at all. In January I was over the moon as I felt that my feet were buzzing. I said to myself that now there's no way it's als. Unfortunately I happened to notice once during this "buzzing" that my skin was mowing very rapidly. Putting finger where the buzzing approximately always was confirmed that it was just very fast and long fasciculation in fine area. There's a handful of them all the time. All the time.

All the above I wrote to justify why I wanted to make this 2nd posting. I would really need support and I have no other place to ask.

First, I'm really suspicious of this athrophy in my foot. Wouldn't there be weakness present if it was als?
Second, since autumn I cut my excercise to minimum. Before I went to gym and played ball games weekly. I was so fatigued I've never been in my life (note: I've been doing the same regime for years, there was no signs of overdoing anything, my pulse was normal, I wasn't out of breath, my muscles just were weak). Now I've came back to actually feeling healthy. I have no strenght issues nor am I fatigued. How would I feel healthier and in better strenght if it was als?

Third question that is most important to me: There is something really wrong with the muscles that control my neck and windpipe. If I swallow, I can feel how the muscles feel like the motion is not complete. Something is left behind. Then, all of the sudden, the tension is released and the muscles "pop" back to where they should've move already. This can happen to the muscles just under my jaw, lower the throath or deeper there. It's not painful but the muscles sort of "zap" back like a rubber band. It's nasty :/ Another thing is that sometimes when I move my head, it feels like my head is going to fall off. This has been really challenging to explain to the doctors but I finally understood to compare it to, for example, a knee. Imagine to straighten your leg. The motion is normally smooth. But here, the motion is disjointed, there's resistance that gives in, another resistance point... etc.. This is how my neck behaves and neuro was thinking stiff muscles preventing some of the discs to move freely .. Has anyone had anything, even remotely similar with their throath and or neck?

I want to thank anyone who reaches out for me. I know that what ever is my faith I won't forget this desease or the people who are affected by it till the day I die.
 

KarenNWendyn

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If your neurologist was concerned, he or she would have ordered an EMG. Why don’t you talk to them.

Failure is the hallmark of ALS, and it still sounds like you can do everything you could do previously.
I’m still not seeing ALS in your post.
 

Bestfriends14

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I'll second what Karen said. If your neuro was concerned, they would have ordered an EMG. Just like your last post, you're trying to convince yourself and others you have ALS when you do not evidence symptoms. I'm not sure why you've picked such a disease to chase, but believe me, you really dont want ALS. Time to look at other avenues as to whatever your symptoms may be.

Good luck to you.
 

Gerbera

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I'm having EMG, MRI and lumbar during next two weeks.
 

Gerbera

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I am having my EMG this friday, I've been booked double time for some reason. I had my MRI last Friday however it was only for the neck and head, stating "simple" as a spesification. I was hoping to get the results from the MRI (maybe with some explanation what is wrong with me) before the EMG.

I have not mentioned ALS to any of my doctors once and have been very happy to walk out with tension neck diagnose. I've been working and having a full life, pushing this thing away as much as I can, I didn't even care that food was sticking in my throath for months! I wish I would've, maybe I would know already what's the matter with me.

My fasciculations have now (last two weeks) moved quite exclusively to area below the knee. They are so fine tuned and numerous that it feels like vibration or bubbling as I mentioned before, but the muscles are in fact moving, it's not a feeling. Now, for two days the muscles below my knee started to go spastic, if this is the right term, when walking they would tighten up 100% (without pain) and stay that way, calf and some other muscle in right leg and then some other smaller ones in left. Feels like there's wood instead of mucsle in those places.

Why I'm here is my unresolved swallowing problem that had no structural reason (ENT-doctor checked), tongue fasciculation, and leg/feet issues. I'm not insisting anyone to reply but I no one really addressed my questions as I was just told that if my doctor would have been concerned they would've ordered EMG. I thought this goes without saying and therefore unfortunately left it out.
 

KarenNWendyn

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I’m going to suggest you not post further until after your EMG.
 

Gerbera

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As I've now had my EMG I can also say that I was not going to post, I had my questions there to answer for anyone who would've wanted to do that.

I had my EMG last Friday and I'm generally content, I found the doctor very approachable and everything went smoothly. However I was wondering why he did not test any muscles in my feet; he only tested calf area and upper thigh. He said that testing feet would result in abnormalities in everybody(?). I'm not really sure how to understand that statement?

Furthermore, my hand/finger/arm muscles were tested bilaterally, and the muscle that turns one's head and then cheeck muscle (only on one side for these both muscles). For calf and thigh he could maybe catch one or two fasciculations (wheras my feet area was twitching all the time) but what I've understood here is that it shouldn't be too big of a problem which area they test, there would be something off, no matter the tested area? And these bulbar area tests would be sufficient anyway as I have clear swallowing issues?

The doctor said that, by looking the results only, he didn't see anything alarming. He also said that it might be subject to change because the final assessment is software/computer -based analysis. But I took it as good news for now, because I've seen people saying here that it might be evident from the first seconds the needle goes in that there's something wrong.

In the meanwhile however I've gone to permanent left foot/ankle awkwardness/unsteadyness and sticking of new type of food in my throath. Before I had problems with berries, candy etc. Now it's pasta, crisps, bread... The croquett-approach (where I push what is stuck down with something else I eat) doesn't help anymore as the soft mushy food seem to stick somewhere on the sides of my throath, so the new stuff don't even touch it. I'm still able to cough it up though or flush with liquid if I have any. And my tongue still shooting rapid fasciculations in my mouth..

I pray I would have MS. For being healthy I've lost all hope.
 

affected

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I'm so happy to see ALS has been completely cleared for you :)
Doctors know which muscles to test in the EMG. I can assure you they have many long years of training to understand this.
They aren't looking for twitches, they don't really mean anything.
There was nothing alarming in the EMG, and with ALS the results are widespread, so you are definitely good. No ALS symptoms, and no ALS results on EMG - you don't get much better than that which is great.

Your swallowing issues don't follow how ALS swallowing issues come on, so keep working with your doctor and I'm sure the cause can be found.

Thanks for coming back to update the great news. I hope you find the answers to what is going on with your doctor soon.
 

Gerbera

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Thank you Tillie for giving hope with your message. My neuro contacted me today with some distressing news. My MRI of neck and head were perfect. She went over my symptoms and said that my dysphagia together with tongue fasciculations can not be overlooked and she said she's inclined to another EMG to be booked within the coming mntif (she said if) this first one comes without anything wrong. I'm now also scheduled for swallowing test and lumbar puncture (is this how it is called in English). She also said that she considers my previous sensory symptoms as minor and insignificat as we went them through. It's true that I haven't really had them outside this one episode in autumn, and now in retrospect what I thought was numbness in my ankle/leg was actually more spasticity.

I truly respect this Forum's vast experience with this diseace and I assume many of you go out there in the real world and meet affected people outside your personal circles and help them too. I really do listen when you say this is not what ALS look like. Why wouldn't I, you are my hope! Unfortunately I've found one person from here also describing the exact same onset of dysphagia, solids sticking in their throath, having to push them down with other things. I've also found another describing the same from forum in my own country. As a scientist I still know these are anomalies in your eyes and I do give weight to your experience more.

My symptoms started off with dysphagia without anything else and it was very mild - this is why I didn't even see doctor until 3 months later when the fasciculations started. And I didn't even uderstand those could be related even when I went to see my first neuro. The dysphagia has slowly got worse and now alongside with it are tight and spastic below-the-jaw -muscles, musles that zap or somehow are left behind and move back later on. Lately my throath/frontside of my neck has felt like I've done some kind of weight lifting with those muscles. If I compare to last spring when I had just occasional berry stuck in my throath which I then coucghed up, the situation is now like from another planet. It's daily, affecting everything I eat and like I said the muscles have a lot going on I struggle to explain even with my own language.

I have not said the word ALS or MND in my life unless it's been related to someone/something else. The neuro I have now has put it on the table and I feel lost and don't know who or what to listen. Is there something I can tell my neuro? Something I should emphasize? I feel my symptoms have this wax and wane component definately and this is not ALS. But my dysphagia has been there all the time and progressed. Weakness and spasticity come and go, I have now quit all heavy excersice as I wasn't my self at the field anymore or after it, I just couldn't push myself and needed days to recover. I've been semipro in one sport and I know my body. And now because of this corona my activity is high but mild, as the gym is not open I just cycle and walk and do the regime I got from my physiothrerapist from before.

During the last 3-4 months I've also lost weight. I don't know how much as I don't have a scale and I did not want to bring it up here before as it would have seemed that I'm "making up symptoms" and I didn't want to think of it too much. Normal me would've gained weight without playing and still eating the same. I've never lost weight in my life like this before.

I don't want to make this too long but wanted to mention I saw a list of other conditions with similar symptoms provided for somebody as help to map out the situation. Thank you (even though not provided here) for that as I'm now going it through for conditions that could last this long and having clean MRI's. Hope you are all safe and well and have people around you to protect you from corona.
 

affected

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For sure, come back and tell us when you get a final diagnosis.
There are so many other things it could be, we can't speculate, but we can wish you the best. We can't really do anything more in the meantime as only your doctors can examine you and order tests.
Working with doctors is the only thing we can recommend, but we can't just keep going over and over vague symptoms, and having your adamant that you found some PALS report that matches yours. It is definitely up to you if you wish to convince yourself by cherry picking.
All the very best.
 
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