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radim

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Learn about ALS
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US
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IL
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Rockford
Please, could anyone answer these:

I wonder if a person has ALS, is it possible that:

1) The most predominant symptom can be numbness and tingling sensation? (for about 13 months my limbs fall asleep very easily). My peripheral nerves are extremely sensitive (e.g. when I scratch my skin anywhere, I can feel the entire nerve path)

2)My mobility and fine motor skills (fingers, ankle, etc) greatly reduced, but after a while become better… only so they can get worse and better again?

3) Is it possible to have muscle atrophy without significant strength loss?

Finally, I know everyone’s symptoms and progression are different. For so long I have been trying to find an answer to the following:

4) On average, if the symptoms start in limb(s), would the body part(s) where the onset occurred get much worse before the symptoms spread to other (e.g.) bulbar area?

5) Can bulbar symptoms present itself as constant throat pressure (as if someone was squeezing my throat)?

I am not sure if my words are clear enough to be understood, but I am hopeful to hear some opinions. It has been a long journey for me, and I have been literally tested for everything and anything out there.

The doctor who did my EMG in Bangkok told me there were some discrepancies on my calf and forearm. She concluded it was a pinched nerve and stopped the test there. I was so upset and consider that EMG worthless. I am waiting to see a neuromuscular specialist here in the US, but I was just told today I won’t see him for another three months!

I would much appreciate any thoughts,

RS
 
Hi, relax as none of the symptoms you mentioned are ALS. Put ALS out of your mind and enjoy your life.
 
Thank you Joel,

Yes, I only posted symptoms that seem to point away from ALS. I am curious about all those because:

1) I do have other symptoms that are consistent with ALS.

2) I have read that many people do experience numbness and nerve hypersensitivity (sometimes even as the first symptom), which was my case.

3) I cannot think of anything else that still needs to be ruled out. Don't they say, it's ALS after everything else is ruled out?

I am not saying I have ALS but would be grateful for any other thoughts.

Thank you,

RS
 
pressur in throat could be thyroid or parathyroid have doc check for botha tsh , free t4, and free t3, for thyroid , low level vitd d level and or high calsium ( cant spell that word bones are made of it ) would be cause to suspect parathyroid
 
You more than likely have a pinched nerve. I am experiencing the same thing-parasthesia, tingling, etc. Atrophy is very common when a nerve is involved. I had surgery on my neck to relieve a compressed nerve root a while back. Since then I have had some residual effects that caused me to be concerned about the possibility of ALS, especially due to the atrophy in my hand and forearm on the affected side. My neurologist, doctor, and physical therapist are all in agreement that this is probably due to the surgery and nerve damage pre-surgery. It can take months to a year for this to improve AFTER the nerve is decompressed. I am scheduled for an EMG next week to rule out anything else, but it sounds like you have classic pinched nerve symptoms. You can have a pinched nerve without having any real pain. I would take the advice on this forum and live your life without fearing ALS. Stressing out about it can make things worse and maybe even perceive some things that aren't really there.
 
Thank you very much for the comments.

I just spent two years in Thailand, and one of the advantages of being there was the very quick access to doctors. Consequently, I have had my blood tested repeatedly for (a doctor's quote) everything one's blood can be tested for. All my numbers are perfect. My immune system is supposedly also very strong. I mentioned this in my post a while ago: The only objective finding was slightly increased protein in my CSF. Also all three numbers pertaining to my RBC (hematocrit, hemoglobin, and their count) are slightly below normal and their levels decrease every time my blood is tested.

I have suspected some kind of infection. But should that be the case, I was hoping that its effects would be gone by now. I never feel normal and wake up every morning feeling differently. Sometimes my fingers or toes are stiff; sometimes my legs feel like I have been running all night long; sometimes my throat is very tight; sometimes I feel almost normal...but never for more than a few hours. I twitch randomly and my forearms and shoulders are all bones. I have exercised my entire life and can still lift some heavy weights.

As a former medical student and current biology teacher, I think I am pretty rational and have basic understanding of how our bodies work. But after all this time of uncertainty and discomfort, it is very hard to be patient and worry free.

Again, I am not saying I have ALS but am hoping to receive opinions from people who might have (or had) same or similar symptoms. Maybe, unlike me, you have found some answers.

Thank you very much for reading,

RS
 
I'll answer your questions in order:

1) NO
2) NO
3) NO, not if it's due to ALS
4) Typically, that's how it progresses
5) NO

Sensory symptoms typically point away from ALS, so please don't say you "read somewhere" about "something" without telling us WHERE you read it. I read that the moon is made of cheese . . . that the cow jumped over the moon . . . that wolves can blow wooden houses down . . . etc., etc. It doesn't make any of it true, although I feel a bit safer because I live in a brick house . . . and from what I've read . . . wolves can't blow them down.

Bottom line: your story is not the story of someone with ALS. I assure you that just because you can't think of anything else it can be, doesn't make it ALS. Let your neuro's figure it out.
 
Thanks Wright,

My all "I read somewhere" are from this forum from people whose loved ones have suffered of ALS. It is, in my opinion the only valid source of information. If you can take my word for it, I am not going to look for the particular entries again and providing links.

I stated several times that I am not claiming I have ALS, but because of the vague nature of the condition, it's a possibility.

I am not trying to bother anyone on this forum (I get the impression that I might from your "cow jumping over the moon" comments) but am merely using it as another source of hopefully intelligent information.

I also stated that I listed all the symptoms that are pointing AWAY from ALS and just wanted to hear more thoughts.

As for "let the neurologists figure it out"... My primary neurologist in Thailand was the prime minister's father, a neurologist considered to be the best in the country. I was also seen by the best neuro-muscular specialist in the hospital where the Thai king is treated. I have seen several other specialist. Only one of all thought it might be ALS... and he came up with it on his own, I did not say a word about it. Here in the US, it won't be another 2.5 months before I can see a doctor.

For all the reasons above I am here on this forum. I very much appreciate any kind of feedback and discussion. However, jumping cows and moons made of cheese are just wasting your and my time.

Good day to everyone,

RS
 
Radim (and other newcomers and guest lurkers) ... [Information is from} people whose loved ones have suffered of ALS. It is, in my opinion the only valid source of information.

You have to be careful in picking up information from this forum (or any other support group online). Much of the information on here is not medically correct (and I've contributed my own share of bad guesses, so I'm not casting stones), and until very recently, there was no way to distinguish between people who do not have ALS and those who do. So a wide array of symptoms that have no connection to ALS are floating around here and people can and do get badly misled. Be especially careful of older posts. On more currect posts, we do attempt to indicate who has ALS and who has not been diagnosed.

There are a few members who absolutely know what they're talking about ... Wright, especially; our nurses; Rose; our moderators, etc .... but in general, messages on this forum should not be considered a source of "valid information." That isn't the purpose of a support group. You can find valid info on university medical school sites and ALSA and MDA sites. And, especially, from your neuro.

Good luck finding your answers.
 
Well said Beth, thanks. The best source of information is from your doctor(s). We try to be helpful but our strength on the forum is support not diagnosis.
 
Thank you guys. Your point is well taken. It was only after many months of seeing one neurologist after another when I decided to try this forum. I might be completely wrong, but I was simply trying to say that because of the tremendous variety of symptoms that accompany this disease, it's useful to read about real experiences. Within the last year, I have read everything and anything (well, I exaggerate just a little bit) pertaining to neuro-musculars disorders. If, for example, I read fifty times that sensory symptoms are not usually a sign of ALS, and then one person describes his/her ALS onset as a sensory experience, it is hard to discount it.

Barry, I understand and I am not looking for diagnosis here. I have explained that I have tried to see many reputable doctors with no results. It's why I have asked for opinions and thoughts... nothing else and nothing more. Perhaps it was not the best idea.

All the best and thank you,

RS
 
RS ,

There a no bad ideas.
Its just what you intend to do with the answers that you need to worry about.

Glen
 
Very good point Glen. I would simply like to have as much information as possible. It can never hurt, regardless what I would do with it. Someone in my immediate family is very sick, and it could have been prevented if only she had known enough...

Don't give up.
 
We never give up, that's why we're here. :smile:
 
Yes, yes I know and admire that...and so wish I could say something more meaningful.
 
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