Status
Not open for further replies.

fred_dakota

Member
Joined
Apr 22, 2009
Messages
17
Reason
Learn about ALS
Country
US
State
ND
City
Fargo
Hello All,

Since I posted last I've received a "normal" EMG/NCV on the left arm and left leg and my head MRI/MRA the following day was "Unremarkable."

I've been keeping a journal of my symptoms so I can be as accurate as possible next time I see my Doc.

Old symptoms persist. New symptoms this week include: noticable thinness of arms, right arm hyperflexic, weak right fist (seems to come and go), popping/cracking joints, and widespread stiffness, aches and pains.

Feels like there's something in or on the back of my throat. Voice gets tires faster than before - sounds a bit hoarse when I do talk.

Also, something I found strange is a couple times I've woken up with one or both arms asleep, even if I haven't been laying on them. Anything to that, you think?

On the upside - I was having widespread fasciculations too, mostly after work, but the last two days they've been few and far between.

Last week my ankles and feet were just plain sore. Like they were about to give out, but this week it hasn't been an issue at all.

So asides from being told I have an "unremarkable brain";) I'm no closer to an answer than I was before.

I have an appointment with a Neurologist May 18th. Hopefully I get some answers then.

I'd appreciate any input/thoughts on this.

Thanks!
 
Hello All,

Since I posted last I've received a "normal" EMG/NCV on the left arm and left leg and my head MRI/MRA the following day was "Unremarkable."

I've been keeping a journal of my symptoms so I can be as accurate as possible next time I see my Doc.

Old symptoms persist. New symptoms this week include: noticable thinness of arms, right arm hyperflexic, weak right fist (seems to come and go), popping/cracking joints, and widespread stiffness, aches and pains.

Feels like there's something in or on the back of my throat. Voice gets tires faster than before - sounds a bit hoarse when I do talk.

Also, something I found strange is a couple times I've woken up with one or both arms asleep, even if I haven't been laying on them. Anything to that, you think?

On the upside - I was having widespread fasciculations too, mostly after work, but the last two days they've been few and far between.

Last week my ankles and feet were just plain sore. Like they were about to give out, but this week it hasn't been an issue at all.

So asides from being told I have an "unremarkable brain";) I'm no closer to an answer than I was before.

I have an appointment with a Neurologist May 18th. Hopefully I get some answers then.

I'd appreciate any input/thoughts on this.

Thanks!

hey, are you still having problems walking straight etc? I remember before you had all sorts of really bad numbness, weakness etc. How have you been eating? take a look at some of my older posts, or compare notes with planningguy. There are a few people lurking on this board who have been given the "clear" from their neurologists/GPs or been told "its just anxiety" even though it seems like there is something sinister lurking. - note, "clear" doesn't mean there's nothing wrong with you - my neurologist said "there could be something wrong its just not neurological." One good, and very helpful/promising thing for you is that I have come to understand, through the beautiful people on this board, that neurologists/docs are pretty good at diagnosing ALS if they see it. If the docs tell you you are "unremarkable" then that is likely the case, no... that IS the case.

Anyway, i hope you get some better answers, and that you feel better. Are your symptoms affecting your quality of life or is it more of just a nuisance at this point? feel free to PM me if you don't feel like cluttering the boards.

-WS
 
Thanks for the encouragement WS. I'm not having any major difficulty walking straight, but my left leg is still funky. I don't have any chronic numbness except for my right big toe, which I believe is due to me compensating for the left leg in order to walk straight.

I've been eating a lot lately, trying to keep my weight up. Taking a multivitamin each morning.

You're right about this board. There is an awful lot of good vibes here and I've learned much. At this point I'm in such a better headspace than I was a month ago. I'm trying to stay positive and live in the moment rather than dwell on my symptoms.

Best of luck!
 
Thanks for the encouragement WS. I'm not having any major difficulty walking straight, but my left leg is still funky. I don't have any chronic numbness except for my right big toe, which I believe is due to me compensating for the left leg in order to walk straight.

I've been eating a lot lately, trying to keep my weight up. Taking a multivitamin each morning.

You're right about this board. There is an awful lot of good vibes here and I've learned much. At this point I'm in such a better headspace than I was a month ago. I'm trying to stay positive and live in the moment rather than dwell on my symptoms.

Best of luck!

so did docs find any denervation/reinnervation or was your emg totally clean?
 
Update 5/17

Not sure about any denervation/reinnervation. I'll ask my GP tomarrow when I have my follow up appointment.

Still losing weight, muscle definition is apparent, right leg is getting bad too now, gait off-kilter. So along with the fascics, muscle soreness, popping joints, paresthesia and stiffness it all seems to point towards this dreadful thing (or something similar). I'm checking online everyday for research news.

Whether I have it or not, I'm invested in it now. Fargo has a ALS Walk in August, if I'm still on my two feet you can bet I'll be there.

Jeez. It's only been two months...
 
Fred-- if you had any denervation/reinnervation I'm sure they would have told you. That wouldn't qualify as a normal EMG.

I get the alseep limbs things, even when I don't sleep on my arms. It's not my whole arm, usually it's just the fingers affected by the ulnar nerve, on both hands but more often the right. I get it occasionally on the carpal nerve as well.

Are tons of popping joints a sx of ALS? I don't even want to know, as I get them alllll the time.
 
I also would like to know about cracking joints, mine are horrible in the morning, I sound like snap, crackle, pop when I first get out of bed. They are loud enough so that others can hear them.
 
Update 5/23

OK

I asked about any denervation/reinnervation on my EMG and my GP said the test was "essentially normal" (?) I asked what he meant by "essentially" and he corrected himself and said "normal, it was normal."

I had my Neurology appointment last Monday. She said she does not think I have ALS and based it on my exam being "pretty good" along with my clean EMG from 3.5 weeks ago. She did notice I seemed to be "missing" some muscle. She diagnosed me with "Weakness."

She's going to do another EMG and CPK test on June 9th amongst other things.

She did take note of my cracking joints but didn't attribute it to anything.

I'm not sure that cracking/popping joints are a definate sign/symptom of ALS but I do know from researching this board that they can be a part of it.

As far as the sleeping limbs, my Neuro seems to think this would point away from ALS but from researching paresthesia I have seen it listed as a symptom on some sites.
 
Your neuro is doing another EMG in two weeks when you had one 4 weeks ago? Why?

Cracking/popping of joints is not "definitive" of ALS, and last I knew, there are no "definitive" symptoms that scream ALS. Even the infamous denervation/reinnervation can stem from other less ominous causes. As for the numbness, and seeing it as a symptom on some sites, you have to be careful what you are reading and who posted it. For example, there are a number of us here who have experienced numbness but we also don't have ALS. But we may have posted here about it ( I know I did) and as a result might lead the less careful reader to conclude that sensory issues are a symptom of ALS. While I have read in neurology texts (don't ask) that a teeny tiny proportion of ALS patients do experience sensory disturbances, sensory symptoms usually point any neurologist away from MND.

Good luck at your upcoming appointment.

Lydia
 
Fred ... I agree with Lydia. ... be really careful about what you read on this forum, especially about "symptoms." Many participants on this board have not been diagnosed with ALS, and do not, in fact, have any symptoms relating to ALS at all ... but think they do because of the same thing you are relying on ... messages from other people who do not have ALS but who do not make that clear in their postings.

It becomes a vicious circle of misinformation. You say: I'm not sure that cracking/popping joints are a definate sign/symptom of ALS but I do know from researching this board that they can be a part of it. That is wrong, I believe. I've never heard or read of anyone with ALS having cracking/popping joints due to ALS. I've been told by my PCP that, usually, those popping joints are related to lubrication drying up around tendons ... or the tendons themselves getting stiffer ... which has nothing to do with ALS.

(In the "unremarkable brain" department: My husband was drafted in WW2, and at the conclusion of his physical exam, he was told he had "no substantial abnormalities," and he's been brooding about that ever since.)
 
Thanks for the responses/encouragement lydia and BethU.

My Neuro is doing another EMG due to my symptoms progression and I think so she can see first hand what's going on (I got the feeling she doesn't wholey trust the opinion of the Dr. who did my first one).

I know I read on some website out there that paresthesia was lumped in as a symptom of ALS, alongside MS, Lyme Disease and others, but when I tried to find it again I could not. Go figure. The numbness is not as consistent as my other symptoms either.

Also when I search "popping joints" on the Forum it does come up here and there, but as you said it's usually suggested by people w/o diagnosed.

I just wish I knew what else coud cause fatigue, muscle thinning/definition, weakness, fasciculations, dysarthria, alongside the joint popping, gait disturbance and aching muscles.
 
Update 6/9

Hello all,

I had my follow up with my neuro today. She did another EMG/NCV test. It revealed a "few slight abnormalities."

She didn't discuss anything more than that, noted weakness and atrophy and scheduled me for a neck and lower back MRI. Followed by a possible Spinal Tap.

Symptoms progress. My left thigh is getting smaller and I get winded just walking around now.

Don't do drugs, kids.
 
Fred, here's hoping you'll see a reversal of your problems.
 
I'm in agreement with Rose, let's hope for a reversal of things for you and a diagnosed of something other than ALS.


Zaphoon
 
Hey all. Thanks so much for your support. My last Neuro and GP appointments in July consisted of "basically normal" results and my GP thinks it's all related to a possible Mental Health disorder. My weakness/fatigue has improved greatly and they've ruled out ALS for now. My left leg is still goofy. There was some slight nerve irritation in my lower back according to my last MRI on that area but it's unknown if thats the cause or the result of walking crooked. Other symptoms, more viral have arisen, but all STDs have been negative so it might be something else entirely. Maybe the big C. I don't know. I'll keep plugging away. You all take care and stay strong.
 
Status
Not open for further replies.
Back
Top