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sigma35

Member
Joined
May 9, 2009
Messages
15
Reason
PALS
Diagnosis
05/2009
Country
US
State
N.Y.
City
Centereach
Sorry I have not commented in such a long time, but I am really trying to keep my mind on ANYTHING ELSE ! I actually 2 weeks ago went to an ALS support group with my wife ( who has been going often ) , but I don't know what I was thinking...I actually felt worse seeing what will eventually happen to me. Anyway, my question : When I was first diagnosed, I had a slight numbness in the toes on my foot. The Dr. told me it had nothing to do with ALS, something else was going on. Since then I have had tons of blood work, and 2 MRI's, which showed only that I have a small bulging disc . In the 2 months since, the numbness has increased, now I can barely feel any of my toes, and it is impossible to flex my ankle , my foot feels kinda dead. . My legs always feel weak, and I was fitted with a brace for stability, so I can continue to work. Is this part of ALS, or do I really have something else going on ? By the way, my original EMG came back positive, and I also have twitching everywhere at this point, its getting harder to fall asleep when your body DOESN'T want to keep still !

Thanks
Bob
 
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I have never heard, or experienced, numbness being a symptom of ALS.
 
You should have it checked out, as it could be anything from vasculitis to neuropathy.
 
Or that bulging disk !?!
 
Bob,

When you say numbness , are you talking about the lack of reaction when you ask your ankle to do something , or is it actually numb to the touch?

After a long day of wearing my brace , It feels heavy and it tingles. I always go "AHHHH" when I take it off.

Now , facing others when in a group meeting , I first was hit with those same thoughts and emotions. Now , I am kinda cruel ... My thoughts are more like "HA - not there yet - takin names and doing the cute ones twice." You need to dig happiness from wherever you can.

Glen
 
I avoided group meetings for quite a few months for the same reason ... did NOT want to see what I'd be like in a year or so. Finally went, and I was the worst one in the room. :-( Nobody could understand a word I said, I was still trying to sip liquids, and drooling down my chin and t-shirt. Everybody else was really together, looked comfy in their chairs, articulate.

Rude awakening.
 
Thanks for the responses. To comment on Glens question, my foot is not numb to the touch, I have feeling, it just hangs like dead weight. If I shake my leg, my foot just "flaps " in the breeze, so to speak. I can still walk, but without my brace I can't go very far, my legs feel like they want to give out. Even when I first wake up in the morning, my legs feel as though I just ran a 20 mile marathon (Ha Ha, I wish I could).
 
Yep , that is the way I am. I have to use a walker constantly now.

When deciding if you should walk without an aid , ask yourself "Do I feel safe?"

Glen
 
I get a burning sensation in my right big toe almost on a daily basis. It doesn't last long and isn't severe; just a nuissance. (are there 2 s's in nuissance?)

I also, to a lesser degree, experience "pins and needles" on the bottom of my left foot. Since I have a sister with MS, I sometimes wonder if at some point down the road, my diagnosed might change. I had a really bad exacerbation of symptoms last year that lasted for several weeks. I haven't had anything that severe since. The GP wants me to push for another EMG at my next neuro appointment since its been over a year and some muscles are looking funky.

Zaphoon
 
Hi Bob, I was diagnosed in Feb. of this year. I know what you mean about the groups. I finally went to one in July. I hadn't started my meds yet for the crying thing... So when I saw all the folks affected and in different stages, well I lost it. I had to excuse myself when the Dr. was talking about Augie's Quest, and they showed the film . How he was in the beginning and now. I just lost it ... Beth a very kind nurse that has been involved with ALS for years was so nice and helpful. Anyway I know where you are coming from on that subject...
In Jan of this year my right leg would sometimes feel like it was asleep after a night's sleep. It was not hurting at that time. The Dr. said he didn't think it had anything to do with ALS. Sense then, my leg hurts at least a couple times a week in the morning. It throbs for a couple of hours when waking up ... Strange to me that I didn't have it before now and yet the Dr's say nothing to to with the disease? L
 
Remember that old jingle that went something like:
The foot bone is connected to the ankle bone, the ankle bone is connected to the shin bone, (etc. etc. etc.)?

I believe ALS can cause all sorts of stuff (aches, pains, spasms) outside of motor neurons. If muscles get atrophied, I'd think it could put a strain on joints.

I think parts of our body must talk to each other and can invision a conversation like this:

Knee joint: Hey! You leg muscles! Yeah! I'm talking to you! What the heck are you shriveling up for? Don't you know we have work to do? Come on! This big guy is wanting to walk and I could use a little help here!

Zaphoon
 
Thanks everyone for the responses. My wife keeps trying to tell me I may have something else besides ALS, and I should get it checked out. I do have another visit to the ALS clinic in about 2 weeks, so I will wait. I really don't want to go for anymore testing though, I am getting tired of it, and the results are always the same. I have accepted my DX , and I don't really see any "pot of gold " at the end of the rainbow. I just want to live out my life as best as I can, and deal with this as it comes. And most importantly, my Daughter is getting married in February of next year, and I told her I WILL WALK HER DOWN THE AISLE ! ......so I have a goal to keep my mind straight.

Again, thanks for the rsponses.
P.S. Oh, I forgot, I am participating in an ALS walk September 12th in my area...hopefully I can do most of it. The response I have received from my family, friends and co-workers has blown me away , as most of them will be there also !
 
hi bob.
i used to get what i percieved as numbness ,a leg or one side of my body would feel numb or dead but it was like it was deep inside as i could still feel if the area was touched.
in reality it is weakness that can cause this percieved sensation as i found during my research.
 
Z you made me laugh

Zaphoon, you make me laugh. Yes, and why not, everything is attached after all? Even though sometimes I wish I could detach my leg...LOL
This is the best place to go for theropy.. I think every time I go to the Doc that I will somehow feel so much better and he will have this BIG solution for what hurts.. Ya know, It just doesn't ever happen. I go in see him, he is very nice and then he is gone in 10 min until the next 90 days? Is it just me? Does anyone else feel this way?
What do I expect him to do though? He can't fix me ,he can only tell me what has progressed and maybe give me a pill for crying or laughing or a pain killer for pain I'm not to have? Then i get anxious ,because I feel like my breathing is not a good. So I want to see him soon. Well, do I really want to see him soon? I don't really want to know my breathing is worse? Have to feel kinda sorry for the Doc too? Well, I am making a mohair bear for a, Run for Linda, that my kids are having for me in Oct. It will be a raffle. bear. I have made mohair artist bears for years. Wonder how many I will make in the future? This one is taking lots more time. Oh , I am happy today that I can still make one! Right? ... They are helping to raise money for my voice device. I have great kids.. Linda LIfe is still GOOD!
 
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