I am scared...

[Moe80]

Hello everyone,

Let me first start off by saying, I have suffered from heath anxiety for the last 10 years. I am the kind of person who is completely and utterly aware of all sensations going on inside of her body at all times. However, this being said...I've had some recent neuro symptoms that have scared me very much. The list includes:

1.) A burning pain down my arms that was waking me up in the middle of the night. This started about a week ago. During the day the burning and numbness and tingling could be felt down my right arm primarly in the pinky and ring finger. I felt like those two fingers are stiff. Some other muscles in my body feel burny and achey too.

2.) I feel like a am trembling inside of my body. The best way I can describe it, is I feel like am vibrating and buzzing inside of my body all day.

3.) I've been getting random twitches all over my body over the last week or so.

4.) My whole body feels fatigued, and achey. I feel like all of my muscles are weak and fatigued. I walk up a flight of stairs at school and it winds me. I am not in good shape and don't know if I've noticed the stair thing lately because I've been more aware or because my muscles are really week.

5.) I feel like I can pronounce words. My brain feels all foggy and cloudy all day.

6.) I feel like the bottoms of my feet have lost some sensation in them. The back parts of my legs go number if I sit or stand in the wrong position. The numbness ususally goes away for the most part when I walk or shake it out.

7.) I feel like my whole body has had decreased sensitivity to hot and cold.

8.) All my symptoms seem to be more pronounced on the right side of my body then my left.

This has all slowly seemed to come on over the last month since my anxiety has been high.

I've been to the doctor 3 times in the last week. They have told me the following: I am having severe mucles spasms in my neck and back caused my stress and anxiety. They took a cervical xray or my neck and my spine is all out of whack because of the spasms. The ER doctor (yes, I even ran to the ER with my worries) told me I have Costochondritis which is an inflammation of the cartilage joining the ribs to the breast bone. This condition is caused by emotional stress. The ER doctor said that when your upper back muscles spasm like mine are the nerves in the muscles get bunched and this could be causing my burning numbness and tingling pain down my right arm. He also said since our nerves are all connected that this is why my symptoms could be more pronounced in the right side of my body. I was also diagnosed with Fibrositis at the ER which is chronic muscle tenstion. However, I am having a hard time believeing anxiety is causing this muscle tension and not ALS. Isn't ALS suppose to cause stiff muscles?

I had an MRI in 2004 which came back all clear. I am going to schedule another MRI or the head and spin to check into things. Should I even be worried about getting an EMG? I know this may sound silly to all of you, but please take a look at my symptoms and give me your honest opinion.

Thanks,
Michelle

[wright]

Hello Moe

You simply have too many sensory symptoms for it to point to ALS. Your added anxiety is surely not going to help your symptoms. I know it's difficult not to worry . . . I was there . . . and to be honest . . . still have my moments. However, I hope that your docs have been able to calm you a bit and that my words here have helped too.
That just does not sound like ALS at all. I would ask for an EMG just to calm your fears. Keep us posted.

[Moe80]

Thanks Wright! What is your experience with ALS?

I forgot to mention that I am a 28 year old female by the way.

How quick do symptoms present themselves anyway?
All these symptoms wouldn't just crop up in a months time, would they?

[wright]

Hello again Moe

My experience with ALS is A LOT of research (I have a stack of ALS scientific journal articles stacked-up to my eye-balls . . . I am currently a professor and teach in a medical school and I was a scientist for nearly 10 years), talking to ALS specialist neuros and this forum. I came to this forum looking for reassurance / answers, just like many because of scary neurological symptoms. I knew a fair amount about the disease, but certainly not enough to alleviate my fears. I'm still here to lend my knowledge and support. Even though I have been told I don't have ALS (I'm still not 100% convinced), I think that maybe I've gone through what I've gone through to be exposed to this disease . . . and I am chosen to take it up as a cause. I'm going to do all I can to bring attention to it, and fortunately, I am in a position to do so.

On to your questions:

You being 28 is a good thing. Only 5% of ALS dx are prior to the age of 30.
As far as symptoms presenting themselves: it can vary but there is a general progression to things. It is an insidious disease and so typically starts very slowly, to the point where you don't really realize anything is wrong (although in retrospect, many can point to things that were going wrong); it more or less sneaks up on you. Unless you were completely unaware of your body, I can't see how your symptoms could present themselves so quickly. And as I said before: you have a lot of sensory symptoms that point away from ALS.

I hope that helps.

[Moe80]

It helps alot, Wright. Thank you. :)

I've also started celexa (an anti-dep med) this week and am on soma for muscle relaxation. Could this cause muscle weakness? I'm sure. haha

[BoxersRule]

Moe80, Your in my thoughts- I am 28 yr old female too. First started out w/ random sporatic muscle twitches any and everywhere- I call them HIT N RUNS! They thump n run. I never have time to show anyone...I first had it 18 months ago- recently came back almost 4 months ago!!! Same type of thing. Only this time I googled. I do not have a bit of weakness my GP's say Im strong as a ox.
Only thing I have been doing lately is examining my body for indentions/atrophy. I dont even know what atrophy looks like. I dont think its mere dents, but total MUSCLE loss from what I've gathered for neuro sites and pals and it occurs later in the disease after weakness due to disuse of muscle.
I agree w/ Moe you have many sensory issues for it to be als.
one thing we have on our side IS our AGE! As Wright said only 5% are diagnosed under the age of 35 I think it was said. (Correct me if Im wrong) that means out of the 5,000 people diagnosed w/ it a year only 5 % are our age. (and was told by a neuro most of THOSE are familial).
Anyhow your in my prayers!

Wright did you get a dx? Is it still bfs?

[wright]

I don't really twitch much. My problem was unexplained muscle weakness followed by muscle atrophy. I have been diagnosed with a peripheral denervating syndrome. Simply put: some of the nerves in my torso and arms are getting eaten and therefore causing muscle weakness and atrophy. It is believed to be autoimmune in nature, but they don't know for certain. It is not lifethreatening and there is absolutely no treatment, so I just have to wait and heal. But as I said, until that healing process starts, I will not be 100% convinced it isn't something else.

[BoxersRule]

Well your in my thoughts and prayers- I am about ready to smash this until something really omnious happens. I admit I have hyperchondria and Ocd and these twitches have made it A LOT WORSE. My twitches are getting significantly better. I was great til I thought I saw that dent just below my ankle bone on my right foot- however when I found that pic of my foot 5 months ago...I saw it there too.
I think MOST pals on here say their atrophy came after weakness which make sense. I am a nurse..I did hospice and I know bed ridden people ofcourse got atrophy only after not being able to use their legs etc.
Anyhow. Blessings to both of you-

[Anna0413]

Wow, it seems there are alot of us 28 year olds out here freaking out over ALS. I am one of them and posted in another thread about my concerns.

I have a long story to go with mine that I wont bore you with, but I am also a big time hypochondriac. I am so much so that even though they put me on anxiety meds, I still twitch and fear ALS almost every second of the day. I know the twitching is real and the weakness I feel in my arms and legs are real.....then again, maybe not. :oops:

I guess deep down I know I dont have ALS....but one never knows for sure until time tells I guess. I think I will request an EMG just to make myself feel better.

The best thing for the twitching is to not think about it, but of course for us hypochondriac's that is virtually impossible.

I hope and pray that all of us just have BFS....and that we can get our health anxiety under control so that it doesnt consume our lives again the next time something rolls around.

Good luck!

[MtPockets]

From one who has ALS, Dx May 11, 2006 currently in a wheelchair full time with no use of legs.

My symptoms began with simple muscle spasms, some call them fasciculations, and slowly over a few months turned into Charlie horses, where the muscle cramped with extreme pain in my feet, calves. After about 6 months it moved to my thighs. At present it has moved to my upper torso.

Since I knew something weird was going on I measured my Calf and thigh muscles at the widest point and over 10 months saw a decrease of about 4 inches in muscle mass, volume, due to atrophy. By that time I was only able to walk short distances with a walker.

Within a few months I had lost the ability to move my legs or feet on their own. If I locked my knees in an upright position I could pivot to transfer to a chair or to a wheelchair. But I can not take one step.

Just another view to give you an idea of how ALS might progress. I know each and everyone is different with the progression of ALS and the symptoms, but what I have read here does not sound like ALS to me. Good Luck finding out what is going on with your body.

[wright]

Hello Big Al

Glad to hear you're back home and doing better.

The progression of atrophy is something I have been trying to research for a long time. I have been on Medline for hours and hours and hours and cannot find a single journal article that addresses it.
So I feel you (or anyone else that would be willing to help) would be a good person to ask:

You said you lost 4 inches in your thighs:
Was there more atrophy initially or was the atrophy steady?
Did it ever stop for a time and then start up again?
Did you notice it in more than one muscle at a time or did it take one muscle at a time?
Did it take sections of muscle or did the whole muscle atrophy?

I'll leave you alone now . . . well . . . at least for now. :-D

[MtPockets]

Since I have limb onset I may be different than a lot of other people. But I can tell you what I have documented for my case.

The muscle spasms, fasciculation's, started in my feet and calf muscles first. After about 3 months it progressed to my thigh muscles. Both were spasming at the same time. It never stopped for any amount of time no matter what medicines I took or anything I did to try to halt it.

After a month of the muscle fasciculation's I measured both my calf muscles and both thigh muscles at a center point on each leg. Six months later I had lost 4 inches in the thigh and 2.5 inches in the calf muscle of the left leg, 2 inches in the right leg calf. So the decrease was not uniform, but it was steady with no pause in the progression. The progression seemed to be going on at the same time with the whole muscle involved at the same time.

There was never a pause in the progression that I know of at this time. Currently I have no movement in the legs or feet. But at least the fasciculation's in the legs has almost stopped. It has now moved to the upper torso and neck area.

I hope this helps.

[hardy42]

Hello Captain Al

I don't know if you remember me, but you replied to one of my threads ("Need your wisdom") concerning muscle atrophy. You said that my muscle atrophy and my progression wasn't "ALS like" I'm reading your reply on here and I'm not seeing a big difference between what happened to you and what happened to me.

If you don't me asking: What is it about my story that isn't "ALS like" I'm still looking for some clarity.

[MtPockets]

As many of us have said before there are so many variations in this disease that what fits for one may be totally different for another. In my case limb onset, I had spasms, fasciculation's in the muscles for several months before I noticed atrophy and actually could see the muscles decreasing in size.

Maybe it is possible for atrophy to happen fast in some cases, it just took a long time for me. I would rather hold on to the "Hope" that it is anything besides ALS that you may have, until the tests and Doctors remove all doubt.

I hope this clears it up some for you.

[hardy42]

Now I'm a little confused. I was reading another post by Wright when he was talking about his atrophy and Grampa Al and ZenArcher replied to him saying his atrophy was too fast to be ALS. I think he lost about the same amount of upper arm muscle as I did in a months time (maybe 1/2 inch to 3/4 inch in a month).
If that's the case, then you losing 2.5 inches in your calf (a muscle about the same size as the upper arm) in 6 months is the same and again, too fast to be ALS. Am I wrong? Could you not really have ALS? Did you have a positive EMG . . . and if so . . . was it early during your atrophy?

[MtPockets]

My calf and thigh muscles started out extremely large as I was very active all my life with tennis, golf, swimming, weight lifting, scuba diving, etc. So for me to lose the amount I said was not much compared to the total I started with. I weighed 275 lbs and am 6 feet tall at the start of this disease.
Here I am since my Dx May 11, 2006, almost 2 years and my calf and thigh muscles look about normal for the average person. If anyone did not know I had ALS and looked at my legs they would think they looked fine, but they aren't.

If you start with calf muscles that are 19.5 inches and lose to 17.5 inches it might look like a normal calf muscle to most people. This to me is not "fast" as you put it. I do not know how else to explain this to you; and it seems like everyone would rather get stuck on this one point than move on to something that will really help.

[hardy42]

I had no idea you were big enough to be an offensive lineman for the Alabama Crimson Tide. :) Please forgive me for not understanding that your atrophy was actually slow. The information you generously gave is helpful and important, because I'm sure there are a lot of people on here that are interested in progression.
Keep taking care of yourself and I wish you the best.