ALS Question

[BettyCat]

Hi, I’m new here and just have a question. My recent trip to the Emergency Room has led me to this forum. I have had twitches for about 7 months now, which I have pretty much ignored because of the information I read on the internet says that everyone twitches. Mine are constant, and not specific to one area. On Monday I woke up with the feeling of heaviness in both arms. They feel kind of like Jell-O and it has stayed with me constantly since then. My family told me that I could have a serious problem so I went to the ER for testing (blood work, CT scan, neck x-rays), all of which were normal. The Dr. in the ER told me I needed to see a neurologist to rule out the possibility of Ms and ALS, neither of which I was worried about until he mentioned them. I have an appointment on Monday to see a neurologist. I am not sure what’s going on but hopefully he will have the answers, but until then I am a nervous wreck. Can ALS present this way?

 

[Twinsmom]

Hi BettyCat,
Unfortunately, there are no "set ways" ALS presents. Going to the neurologist will help give you some clarity. I've learned from our journey, that there are a multitude of possible causes to weakness & twitching that are NOT ALS. AND...ALS is a diagnosis you get by ruling everything else out-so it doesn't typically get diagnosed quickly. While anything is possible, the chances of it being SOMETHING ELSE is much greater than it being ALS.

Peace to you on this journey,

 

[BettyCat]

Thank you for your response. I wish the Dr. had never mentioned ALS at this point considering all of the other things that could be wrong, and I felt relatively normal the day before this started. From what I've read weakness is a gradual thing and does not usually start bilaterally. Is heaviness the same as weakness?

 

[trfogey]

You have done very well in not attributing your twitching to ALS. You would do equally well to have the same attitude toward attributing the problems in your arms to ALS.

From my experience with ALS in the arms, it doesn't present in the way that you are describing. ALS doesn't usually present in both arms at same time -- two years difference in my case. Also, the initial presentation usually starts small and in the hand, rather than in the larger muscles. In my case, it was thumb first, then fingers, then wrist, and then elbow and shoulders.

Finally, that ER doctor was very unkind if he told you that you should see a neurologist because you might have MS or ALS. He had no way of knowing anything of the sort from the symptoms you've mentioned, and it is simply sadistic to speculate about something like that in front of a patient. Hopefully, some sick kid puked in his shoe or some rowdy drunk smacked him in the head before the day was out.

Good luck to you.

 

[wright]

ALS does present in many different ways, but the way you have described is not one of them; you are not going to have symptoms overnight in both arms . . . ALS simply does not work that way. The ER doc has absolutely no clue what he/she is talking about and he/she should have been beaten to within an inch of his/her life for even suggesting such a thing. Please relax and make an appointment with your GP to get the ball rolling on the way to finding answers.

 

[BettyCat]

trfogey and wright- thank you so much for your reassuring responses.

It has almost been a month since my initial post and figured i would post an update.

After about a week my heaviness was accompanied by numbness and tingling in all four limbs. I saw the neurologist a few days after that and he tested my reflexes and said they were all normal and he didn't think it was anything serious. He set for an mri of the brain and neck(normal), and checked my b12(normal) and vit d(low).

Since then things have gotten worse. I still have the heaviness/numbness, but now I also have a loss of sensation pretty much everywhere, I have this constant vibration in my back and occasionally in my legs, I still have twitching everywhere, but it is almost constant in my calves and feet, I have a tremor(maybe twitching, can't really tell) in my hands, and my joints crack like crazy.

I have been to a couple of doctors since the initial neuro appt. for various reasons and now my reflexes are brisk(still neg babinski).
I am not freaking out about ALS, I am just hoping that someone who has been thru the diagnosed process can give me some insight. I have no insurance and this testing is very expensive.

 

[AndyDJX]

I can't imagine going through the testing process without insurance; I'd be out on the streets by now!

Betty, I'm sorry to hear about your health problems. It does sound like you have some bizarre neurological symptoms, but rest assured that NOTHING that you mentioned sounds like ALS.

 

[BettyCat]

Thanks for the response and the reassurance. I do not believe I have ALS, whatever I have is affecting all of my limbs equally, plus I have some sensory issues. I was just hoping my symptoms sounded familiar to someone. I have an EMG and an NCS(?) scheduled for friday, which I'm a little nervous about. I probably will be on the streets if this doesn't get figured out soon.

 

[ktmj]

BCat we could speculate on what you have but I'll refrain from that.

But, I will speculate that it does not sound like ALS and sounds like some other annoying, but benign, neurological conditions I know of.

Right now the symptoms might be driving you nuts, but doubtful it is anything life-threatening. Best wishes.

 

[Marjorie R. Wilcox]

BettyCat... It seems to me, because of the journey we are taking, that it will likely take the neurologist several months to come to a conclusion. It is a combination of testing, mainly to see which diseases they can eliminate, to determine what you might have. Still then it is only a educated guess. Time has to pass to see if or how you progress. We got a diagnosed for my hubby and lived w it for a year and a half. Then they wanted to test for stupid diagnosis we knew he didn't have a chance to have. They gave him a possibility of diabetic neurapathy. Now they are leaning back toward ALS or some othe motor neuron disease. In the meantime, don't borrow trouble, live your life as usual. Yes, you have to find out things, but don't jump on this bandwagon too quickly and loose any sleep.

 

[BettyCat]

ALS Question-update

It's been a few months so I figured I would post an update. I had an EMG at the end of April.
The Dr. shocked the @#$% out of me for about 30 minutes (I think he enjoyed this) and then
stuck me 6 times which was over in 3 minutes. He said there is nothing wrong with me and
told me I just have anxiety. My gp was pretty much in agreement with him up until recently.
He has been testing me for everything imaginable all which have been negative. I went in last
week for some more blood work and showed him my neck which has been bothering me for
about a month.
He told me what it was but I'd never heard of it, he described it as a charlie horse in the neck.
It stays that way all the time and has constant twitching around it. He also diagnosed me with
hyperreflexia, which was no surprise to me because I could feel it. I also now have the babinski
sign.
The heaviness and numbness have gone away for the most part. I still have constant twitching
in my calves and feet, face, and some part of my torso is always twitching. I have shortness of breath
when I lay down and during most activity. The only good change that has happened in the last two
months is that I now have insurance. I see a different neuro on Monday that my gp referred me to,
hopefully he will be able to help me find some answers.

 

[Northern Dancer]

I hope everything works out well.

ND

 

[BettyCat]

I went for my appt. with the new neuro today. He did a basic exam and ordered a bunch of blood work (ana, sed rate, ck?, and 7 others). He basically told me that I have something, he’s not sure what, and we’ll run tests until we can figure out what it’s not. He wrote in my chart “possible early MND”. :sad:

 

[laurel]

Betty Cat did he write down any other differential diagnoses? My husband also had "possible early ALS" on his list of differential diagnoses, and then eventually was diagnosed with CIDP-MADSAM. You seem to have lots of sensory symptoms which is good. Hope that it turns out to be something autoimmune. Good luck.
Laurel

 

[hopingforcure]

Betty,
With the results of your EMG I would think that it would point more toward a PLS presentation if in fact it is an MND. Still could probably be a lot of other things.