does als hurt? cause sensory issues?

[pldo]

I have read all over the place that ALS does not hurt and that if you have the pins and needles and numbness that t you do not have als. I have numbness often in my hands and feet, and a pain in my right bicep that does not seem to go away. It just seems like there is so much misinformation out there- i know you guys seem to have the answers :)

[patricia1]

IN THE BEGINNING OF MY als I had muscle pain if I used that muscle. I had pain the next day Like I worked out at the gym. So yes there is pain in ALS I also have numbness and tingling.Pat

[boxer22]

IN THE BEGINNING OF MY als I had muscle pain if I used that muscle. I had pain the next day Like I worked out at the gym. So yes there is pain in ALS I also have numbness and tingling.Pat


Hi pat, You seem to have every ALS exception out there. Thats scary.

Ashley

[patricia1]

I KNOW! I have a feeling there are many forms of ALS.

[cheryilyn]

I also get numbness and tingling in my hands and feet. i usually notice it in the mornings before i get up, but also in my hands at night after using them all day.

[CindyM]

Same with me.

[pldo]

I have numbness in my hands and feet when I wake up and then in my finger tips and random times throughout the day- and then in my feet it just kind of comes on in my toes. Dr. said hogh blood pressure but I am wondering . . .

[crystalkk]

pldo,
One of the side effects of certain high blood pressure meds is numbness and tingling in your hands and feet.
Do you have atrophy in your hands and feet.
Is it actual numbness that you can't feel with a pinprick.
I kept saying I had numbness to but its not total numbness, I can feel if I am stuck with a pin.
My hands and feet are atrophied, so without the muscle there is less insultlation in them and they get ice cold and feel numb. They also get that pins and needles feeling in them.

As about the part about pain and ALS, it is a crock of _____. That is the typical text book version of ALS.
I am not dx. put I get alot of pain. The first time I went to The ALS dr, he told me there's no pain in ALS
also.

[patricia1]

I guess we could have other problems causing pain. Like artirtis circular problems causing numbness and tingling. Just because we have als doesnt mean we dont get other diseases or problems

[pldo]

It is not total numbness- I can feel a pinprick. My hands and feet are not atrophied- that I have noticed. I do have pits in my ankles thought that were not there before.

[geehdee]

This is how my PA described it to me: "before you knew you had ALS, if something hurt it was probably an over worked muscle or ligament, or your arthritis or a strain or just a pain. Now that you know you have ALS, if something hurts, it's probably the same types of things as before". Makes a lot of sense to me. Having ALS does NOT mean I will no longer have any pain.

Sigh,
geehdee

[pldo]

The shoulder that hurts is the one I carry my daughter with- but it just feels so bad and sometimes it is hard to drive. The pain is radiating down to my hand and fingers.

[grp_believes_in_God]

I would venture to guess ALS might make person more susceptible to things that cause pain like arthritis, sprain etc. If your mucsles are weak they won't be able to "support" the joints and cartilidges as efficiently. Dad used to have aches and pains before ALS which did not change much after ALS.

[CindyM]

The shoulder that hurts is the one I carry my daughter with- but it just feels so bad and sometimes it is hard to drive. The pain is radiating down to my hand and fingers.


I get the same thing. And numbness in hands and feet. The Doctors verified that I have atrophy in both hands and feet, but nobody seems to know what causes the pain and numbness. I will say rest helps, but that is hard to do with babies to take care of.

[pldo]

I wonder if I should go back to another dr?! Cindy- have you been dx yet? How do you know what atrophy is? Sorry of these are dumb questions

[vmd]

As with Crystal, I have found that as my hands and feet seem to have atrophied, I am more sensitive to the cold. For example, when I walk in my basement, the concrete is very cold and the soles of my feet hurt. I don't remember this extreme sensitivity to cold before I started noticing atrophy.

[CindyM]

To answer your question about what atrophy is, I had to have the Doc point it out to me. Actually every neuro I saw noticed my right (dominant) hand. Once they showed me what to look for, I saw it on my left as well but didn't say anything, wanting to see if they noticed. The ALS clinic's report says "muscle wasting" below both wrists.

Another hint: I noticed they measured my calves and so I do as well, every 6 months or so. Those muscles have stayed the same (thank goodness) but there is a noticible, and measurable difference in my thigh. The right one has lost an inch. Probably explains why it is so hard to climb stairs most days.

No DX yet and depending upon my mood, sometimes I believe I will stay the same for years to come. I have amended my lifestyle and given up some things but I no longer grieve the strength I used to have. Most days I am perfectly happy just the way I am, because at this stage no DX is a good thing, at least for me.

[pldo]

Cindy-

I am in the same boat- most days I do not care and I get on with my life, but other days I just feel like crying. Everyone tells me it is mental, oh how i wish that were true . . .

[crystalkk]

pldo,


This forum is the only place where people understand what we are going through, Everyone says
stress, aniexty, its all in your head. I'm so tired of hearing it....

[CindyM]

I actually guit talking about it except here on this forum. My family was becoming frightened and friends want to see visible proof in order to wrap their minds around it. Now, if anyone asks, I tell them the truth: that I get worse in very small increments, and whaterver is going on progresses so slowly that I've asked to see the docs every six months instead of every 3. And I decided not to repeat the EMG's and nerve conduction tests. It probably would not show anything anyway, and if it would show bad news I need more time before I hear it.

[crystalkk]

Most people don't understand the whole process of being dx with this horrible disease.
And I too, get tired of talking to people that don't understand the whole process.
My friends keep telling me to get new drs. I think this is insane that you have symtoms for
a year and they can't tell you anything. I also would think the same thing if I was not going
through it myself. That was one of the reasons I joined this forum too see if other people were going through the same thing. I was once Like the energizer bunny, I kept going and going. Now that I can't
do much physically nobody can understand this.

[CindyM]

This was the place where I learned serenity. The docs had me all worried and nervous and I was crying all day. Then I met PALS here who live full and caring lives, in spite of knowing for sure they have ALS. I decided, if it comes, I will cope. I cannot thank our PALS and CALS often enough for showing me that a positive mental attitude makes more difference than all the medicine science has to offer.

[wright]

You are correct Cindy: the people on here are inspirational.

I do have a question for those of you that said you have pain: was it an early symptom or something that came later? I am feeling excruciating pain from my shoulder to my fingers in my "affected" arm when I exert it . . . as if someone is wrenching it. I'm only a month into my symptoms, too.

[mamaoftwo]

I presented initially with more sensory stuff than motor - pain, tingling, numbness and also a burning sensation in my arm. If I did some heavy lifting or anything, my arm would hurt so badly I'd be running for tylenol/motrin, whatever I could find. I recall one evening last summer when the pain was so bad, I literally lay awake all night crying. But then it subsided again. It was always with exertion. I think the whole "no sensory stuff with ALS" is totally misleading. Anyone who took the time to read the posts from PALS would realize that many of them have sensory issues too. Once again, no hard and fast rules it seems.

[wright]

I'm a little confused: I thought you said in my thread ("post exertional pain") that the pain you were experiencing started about 2 months ago and you are now 18 months into your symptoms. Did I misunderstand you in your reply to me?
As I said in my post: I started with pretty severe pain about a month after my arm weakness and it happens upon exertion. I have heard that pain is a part of ALS but it seems that it is a later symptom due to muscle cramping, spasms, joint pain, lack of mobility, etc.
Thanks again for the time you keep giving to me.
Take care.

[mamaoftwo]

Sorry wright - what I was trying to say was that about 2mths ago, the pain I experience started spreading from my left arm to the rest of my body. I ache, especially in calves, thighs, forearms, lower back - anytime I do anything physical. It's almost like I have overdone it at the gym or something and yet I havent. The initial pain in my arm would be there regardless of what I did - though definitely worse on exertion.
You are correct in your observation. ALS does not typically present with pain. Any pain tends to come in the later stages of the disease as I understand it. But there are exceptions - we have some on this forum.
Honestly, I have been where you are now. Desperately hoping that someone somewhere can say the one thing that will make you feel like you absolutely can not and do not have ALS. But that won't happen. We are just a bunch of people, diagnosed and undiagnosed trying to make sense of our own neurological problems. I wish I could tell you for certain that it is nothing worriesome. I cannot. All I can do is reiterate what the neuros have told me and countless others - typically ALS does not present initially with pain. I hope that helps.

[wright]

Once again, thank you for taking so much time for me. I still can't put my head around what is going on with me . . . I just can't. It doesn't seem real at all. I guess only time will tell. :(

[mamaoftwo]

Wright - Ive just read back through your old posts and I think Cindy's initial observation was a good one. ALS doesn't tend to come on suddenly like that. There are however, other things that do. Did you look at Guillain Barre syndrome (think that is how you spell it)? And many metabolic diseases too have quicker onset. Everything I have read makes it seems as though ALS kind of sneaks up on you and you get a little worse with each passing week/month. I know it is scary because we all sit here saying to ourselves - "ok, I have fasics, atrophy and weakness. It must be a done deal. ALS for sure. "
But Jamie has all those things and more and does not have ALS. Leslie has all those things and does not have ALS. Cindy and I have all those things and as yet have not been told it is ALS.
So there are other possibilities.
Here is a link that you might find useful. It describes just about all the peripheral nerve disorders that can have fasics, weakness, atrophy etc and other stuff. Just select from the top bar and then scroll down to read the symptoms.
http://www.merck.com/mmpe/sec16/ch223/ch223a.html
This is not an exhaustive list by any means - there are other things too. But this might give you an idea of other options besides ALS.
And if you don't find anything in there that matches up (I havent yet either) don't worry. Some of us for now just have to be content to remain medical mysteries for now.

[wright]

Once again, the time you are devoting to me and your kindness are GREATLY appreciated. Thank you so very much for trying to help me and for trying to alleviate my fears. For you (and the other people on here) to be going through what you are going through . . . AND STILL have the strength and energy to help others is nothing short of amazing. I am so very thankful for having found this sight and for having people like you in my corner.

So you're not diagnosed? What kind of condition are you in at the moment? Did the symptoms "creep-up" on you? I guess in your case they didn't, since you said you were in pain from the very beginning. How did they present themselves? Was it a slow progression? How are your spirits? So much of our communication has been about me, I thought it was time for me to get to know you a bit. :)