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I am currently in the process of the diagnostic workup for some sort of neurological disorder... they don't really know what it is yet, (I had a string of events that occurred in the months before my symptoms), however ALS is on the table as a possible diagnosis, I got more negative bloodwork results today (which to me isnt' a good thing - I desparately want something else to be the cause of my issues).. anyhow,
Can ALS move this fast- my neuro symptoms started about 11 weeks ago-

11 weeks ago - i was walking and my right knee felt weak, kind of floppy, thought nothing of it- i have a history of a torn knee.

11 weeks ago - started waking up all night long feeling as if my arms and that right leg was asleep- and like i had twitches all over, still thought nothing of it

10 weeks ago- woke up and both hands- ends of all fingertips were weak- jello like - noticable especially when I hit buttons and put on makeup or wrote- as if i was loosing my dexterity

9 weeks ago- the twitching really started and became super obvious all over my body- EVERYWHERE!

the hand and leg symptoms seemed to stablize, and the fasiculations seemed to improve, only to worsen again about 4 weeks ago,

3 weeks ago slurred speech only when tired, felt like i had burnt the tip of my tongue, or if it was numb- thought maybe i'm just anxious

2 weeks ago- slurred speech with certain words very consistently- words like yeSTerday (the ST and T's in words especially)

1 week ago- hands getting worse- right thumb especially, maybe a little thenar wasting now

today- my voice is cracking more (I think it may just be allergies - i hope) and swallowing is hard unless i look down

I keep trying to tell myself this couldn't be ALS since it just seems like it is just moving too fast, but can it really move that fast?

(also about 3 weeks ago - when my slurred speech and numb tip of tongue started I looked in the mirror at my tongue, when fully extended it angled a little bit to the left, but I thought, eh maybe it always has, i've never analyzed my tongue before afterall.... I also looked on the underside of it, the left side of it looked thickened on the underside of the tip and both sides of the wider part of the tongue.. since then, i of course analyze more.. the right side now looks the same- thickened, and my entire tongue now is thickended around the edges of it and continues to feel odd, like i burnt it almost, or numb, its hard to tell.- could this be atrophy?)

Again, thank yall for your time in advance, I greatly appreciate it , as I wait for my Dr's to hopefully find another answer, i'm most worried about MND at this time of course.. Thank you for any help yall can provide
 
Has your neurologist told you that ALS is on the table, or it an assumption that you have made through looking on the Internet? It certainly does not sound like a MND of any sort. Has your doctor noted clinical weakness or hyperreflexia?Both are required for a diagnosis of ALS.
 
What doctor has said that ALS is a possible diagnosis at this point? Nothing that you've described here even hints at motor neuron problems. What doctors have you been to? What tests have been done and what were the results?
 
Yes, the first doc I saw (a physiatrist- a friend referred me saying he was a neurologist, ugh that was a mistake) told me on a friday afternoon that he was concerned it was ALS..... I was aware of what ALS was, and therefore of course that made me more than a little upset...He is the one who performed my EMG and then said it was ok.. the 2nd neuro said he performed the emg badly and it was abnormal- insert more panic... he said my muscles and nerves looked like i was 90... and that i do have something going on.. I have seen 3 neuros now- the last one being a neuromuscular specialist that I just saw last week.. My reflexes have always been brisk/hyperreflexive.. they have been considered - brisk by one, normal by another , and the neuromuscular specialist didn't say, but just said with things like CIDP my reflexes wouldn't be like they are with me (and honestly I forgot to ask if that meant he would define them as brisk)- we are talking about him doing an emg now - my first one was only 2 weeks or not even after than hand weakness started (i need good dexterity for my job, so i rushed in for an emg- which again was a mistake to rush into the first doc- i thought neuro- that i could see, learned my lesson). I have clinical weakness of my right hand by the specialist, both thumbs when I initially saw the physiatrist as per him.

The neuromuscular specialist said that ALS is a possibility but with my age - 31 and my preceding symptoms (childbirth 8 months ago, IUD insertion resulting in severe anemia hospitalization with tranfusion, then severe weight loss with malabsorption/GI issues- again hospitalized- presumed celiac. .. all while breastfeeding.. the week i went gluten free/ and stopped breastfeeding is when the neuro symptoms started... If i think back months before I had occasional slurred speech, but i was getting NO sleep, and had no blood from the IUD.. so just thought it was from that, and it was very occasionally)
I have had a slew of bloodwork (MG, sed rate, cpk, crp, tsh, ana, heavy metals, western blot lyme.. and more i can't think of off hand)
negative MRI head and neck
we are talking about scheduling a repeat EMG (by this neuromuscular fellowship trained guy, ) an LP

The more things they are ruling out, the more I worry, since it leaves fewer options for possiblities... ..

What do yall think about the progression? Does that sound too fast, I know anything is possible, but have yall heard of it moving that fast? How about the tongue, I have been taking pictures (I know I sound crazy now!) and it is changing..
Thank yall so much for your time, I REALLY appreciate it!
 
Any thoughts? thanks again in advance for any info/advice!
 
You've seen 4 doctors, if they are not able to give you answers yet, what in the world makes you think we can? Dry eyes can be a symptom of Sjogrens disease. It can also cause GI issues. Personally, I'd be seeing a rheumy.
 
Answer to the question you posted in this thread: NO!
 
Thank yall for taking the time to read and reply, I really appreciate it! notme- my sjogrens tests, and all other rheumatological tests that they have thought of came back negative. You would think after seeing that many Dr's some one would have a clue, but they aren't telling me that they do anyways, just what some of the possibilities are, which is why I have been researching all of the possibilites that they have mentioned that are left, which I think is only natural. I appreciate yalls time and opinions/advice!
 
hi, i am sorry that you are feeling this way. I have similar symptoms like yours , all my test come back clear. I guess it is good thing.
my arms and my legs feeling like dead all the time (it is not numb i can feel everythink), my legs and arms feel heavy. I just dont know, it is a weakness or not.
is your arms abd legs feels dead all the time or it is come and go?
 
zenya- sorry you are going through a medical mystery as well! the "dead" leg/arm sensation is only at night, it wakes me up all night long unless I take something to sleep. I have all over muscle weakness and fasiculations, but my thumbs and ends of my fingertips (on both hands) were there one momement and have stayed and only worsened since in the past 3 months or so.. Now i can't even bend my right thumb.. the tips of all of my fingers are like jello fingers- i push a button and they just fold- there hasnt' been a second that they have improved since it started, only worsened, sooo i am not sure, and apparently either are the dr's. I had numbness at the beginning- i couldnt even feel them put an IV in - i didn't even know they had poked me! but it seems better, i do get this need to crawl out of my skin sensation on my right leg and arms and shoulders every second of everyday still though, not sure what thats all about! Hope you can find some answers soon! It is hard not knowing, praying the best for you!
 
You would think after seeing that many Dr's some one would have a clue, but they aren't telling me that they do anyways, just what some of the possibilities are, which is why I have been researching all of the possibilites that they have mentioned that are left, which I think is only natural. I appreciate yalls time and opinions/advice!

I imagine the doctors have clues, but they just aren't sharing them with you at this time. Why they aren't sharing them with you? Probably because you've demonstrated that you're going to go crazy digging up information, relevant or not, from online sources and they just don't want to deal with convincing you that you don't know what you're talking about until they have a settled diagnosis in hand.

If you want your doctors to be more open with you during this time, quit being a backseat driver who second-guesses everything they tell you. You don't have the skill or the training to diagnose yourself, so stop trying to do it. And, if your doctors are having some difficulty coming to a firm diagnosis, nobody on this board can do even that much, so stop asking us to speculate and second-guess your doctors.

You have an appointment with your latest neuro in three weeks. That's where you'll get the best answers about your case. Try to have more patience than a two-year-old and give yourself a worry break until then.
 
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