Not Diagnosed yet?

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New member
May 19, 2006
My Name is Connie, & for the last almost 4 years, I have been trying to find out what is wrong with me.

At first they thought Lupus, but now they think there is a possibility of it being MS or ALS.
They are calling this condition A periphiial Neuropothy, until they find out what is wrong.
I am scared, & just want to try to find out something about ALS.

Thank You!
Welcome Connie. This is a good place to find out about ALS. There are links to other sites with lots of information. Don't be too sure you have ALS. If they are considering MS then they haven't finished all the tests. Try not to freak when you read about ALS. Knowledge is a good thing but it can play havoc with your mind and then every litttle twitch or cough will have you convinced you have it. If it has taken 4 years for you to get here I would think it's not ALS and if it is it is slow moving. Try not to worry.
Thank You!

Thank You, for the Good Advice. I will try not to freak out & remember what you have said.
Thank You, again!
connie please tell me your symptoms and why you havent been able to get a diagnosis I do hope you are well i too have not beendiagnosed but it doesnt look good
Hi Connie,

I like you am in limbo. I was thinking I had MS all this time, and have had everything under the sun ruled out. I started thinking ALS or MND after my last spinal MRI and some of my neurology notes. I have no idea what my doctor is thinking and I see him again on the 18th.

What are your symptoms? If you want to learn more about MS along the way as well...there is another good site with a nice message board: which I also go to and have been a member there for almost 2 years. My posts on that site are under LindaDas if you go there.

I hope we both get answers soon. I for one feel like not knowing is worse than knowing.

God bless,


Hi, I have been " lurking " for a couple of weeks now but I feel the time is right for me to introduce myself. I am a 43 year old female who lost her mother and her brother to als.My mother passed away in 1968 after als for a year, my brother passed away in 1989. My mother was 29, my brother was 30. About 2 months ago I thought I had restless leg syndrome, it lasted a couple of weeks and then I moved on to other symptoms. I would walk up a set of stairs and my legs would be tired. So thats about where I am today my legs constantly feel like I have pulled mucsles. Its not the same muscle, its different parts of my leg, both legs are affected. Today I spent walking the mall shopping and then took a mile walk when I got home, while trying to cook dinner my one leg seem to be shaking. It wasn't noticable, just the sensation of being shakey. I have not been to a doctor yet. I thought I should get life insurance before going to see a doctor. The insurance goes through next week so I will go to the doctor after that. I have read the post about first symptoms, I am not sure mine match? I am not sure I know what the definition of atrophy is. Does it sould like I have atrophy ? I know with my mom it started in her arms, with my brother it started in his legs. I guess I could call my ex sister inlaw but at this time without having anything concrete the less people know the better I think it is. My sister has already started me on a bunch of vitamins, the same ones that I read about everyone being on. Could they make those things any bigger ? :-D Has anyone had first symptoms like this? Sorry so long. You are all such an inspiration Thanks Mo
Hey Kelly

Kelly -

What ever happened with your neuro workups? Still got the doctors confounded? Nice to see you still checking in. :)

Hi Mo. Welcome to the forum. Sorry that you have to be looking for advice here. Atrophy is muscle wasting. After it has been going on for a while you will notice muscles are smaller. IF you have it. Your shakiness could be from a lot of things. Calcium or magnesium deficiency are just a couple of the simpler things that come to mind. Wait for the ins to kick in and if you still have problems I'd get it looked at. I posted pictures of hand atrophy at the top of the General discussion board. Have a look. AL.
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