Old 08-23-2007, 02:15 PM #1 (permalink)
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Default I am curious

Since the "Is this ALS?" section was created, does anyone follow or know what has happened to all those who were concerned and posted originally but havent posted since.
I PM'd JenniLee to find out what happened to her at Col because she hadnt posted. She replied and then the next day, she did, to tell you all she had had her final diagnosis. I wonder what has happened to all the others. Anyone know. I know I am new to the forum so I am not familiar with everyone yet but I'm curious to know how the others are doing?
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Old 08-23-2007, 03:10 PM #2 (permalink)
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I remember a poster named Zac, who had issue with tongue atrophy. I don't know if he has posted recently.
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Old 08-23-2007, 03:58 PM #3 (permalink)
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there was also someone I think called Nicole. A young mother with kids. Probably many more.
I was just thinking about it because I don't think anyone had reached out to Jen (maybe I am wrong) and I wonder how many others are in the same boat.
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Old 08-24-2007, 08:07 AM #4 (permalink)
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A few people had BFS, and therefore have been lucky and moved on. I worry about Conrad, too. Conrad if you are reading this say hello!

The person I most would like to connect with again is Patty. She is the caregiver for a husband with ALS. Patty- you don't respond to our emails and PM's. I know something is wrong. If anybody knows what is going on please let us know! Cindy
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Old 08-24-2007, 01:20 PM #5 (permalink)
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Hi there,
I'd love some input from some of you. I went to a neurologist Monday because of what I called "random muscle twitching" and leg pain and he told me that I probably had a virus and to come back in two months if they didn't go away. Obviously, is a hard thing to ignore when your body is in constant motion..although not painful, it is extremely annoying. I didn't want to be a hypocondriac, and it is embarassing to keep bringing up to my husband, but again, when your body is in constant motion, it is difficult to ignore. So, the double edge sword "google"....muscle twitching....I was fine with the idea that muscle twitches could be caused by anxiety until I read that anxiety muscle twitches were usually in your eye/hand. Mine are not.

These are my symptoms:

A couple months ago I noticed fluttering under my watch -now I realize they were muscles going off.

Muscles in my rib cage area, forearm, upper arm, lower leg, butt cheek, colon area, stomach area randomly twitching. Sometimes more than once (like fluttering), sometimes they go off one after the other, but it is 24/7 now. I took muscle relaxers a couple nights ago....it did nothing.

Leg pain in right leg ongoing for almost a year. Hypersensitivity in leg. Foot has hurt on that side. I went to the foot doctor and got 3 cortozone shots over this past year because it hurt and the Poditrist thought maybe I had planter faciatias (not sure if that is spelled right). It never helped. I had orthodics made. I usually walk with a very slight limp now although I still am a fairly active person, it is easier to limp, especially if I am tired. Toe on that foot always points up when my shoe is on. Not sure if that is a balance issue or what.

Fell down the stairs this morning.

Occasional problems with speech for the past year, to the point that my husand and daughter have actually teased me. I know what I am saying, my tongue doesn't get them out right. Recently have a difficult time swallowing my vitamins.

Hickups -painful ones many times last couple months. (?) no clue?

My legs are retaining a little water (I am not pregnant). (?) no clue either?

I feel shaky and I am not sure if it is because of my muscles twitching, but I definitely feel shaky and weaker, even though I am still working out.

Should I go back to the neurologist or am I crazy and I am just a healthy insane person with a tick?

It is so hard because I work with cancer patients....and that is so concrete...so I feel like a fool even being on a "forum" when I should be doing my work, but I am so preoccupied with this right now.

Sincerely,
33 year old crazy lady
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Old 08-24-2007, 01:44 PM #6 (permalink)
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Midnight,

What kind of tests did the neuro run? Any? Did you go to an ALS clinic? You say your speech is affected, how exactly?

There usually is not pain with the onset of ALS and that could be totally unrelated.

If you are experiencing weakness that would be a concern. Have you noticed any artophy?
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Old 08-24-2007, 01:57 PM #7 (permalink)
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Hi If I were you I would go to a ALS specialist Your symptoms are concerning Do you have weakness or atrophy you need MRI EMG and blood test Which they will order for you I wish you luck Pat
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Old 08-24-2007, 02:21 PM #8 (permalink)
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Thank you so much for responding...

The neuro ran no tests. He literally told me I probably had a virus and to come back in two months if it didn't go away. That was it. The speech has been a subtle issue going on for a while... just (for lack of a better way to describe) words where I have been mid- sentence talking and I almost miss the words and they end up slightly garbled or blended, or kind of skipped because my tongue cannot pronouce them for a moment. Hard to explain, but going on for at least a year. It is slightly embarassing at times when you are trying to hold an intelligent conversation and you cannot pronounce something and you sound like an idiot.

It is hard because I was reading in the forum about atrophy, and I am not real clear on what atrophy looks like. I have noticed that I have lost some weight about 20 lbs in the last year and I was thinking it was hopefuly because of my body just getting on track after being done having kids (my oldest now 15, my youngest now 3) and my muscles are more defined) even though my I haven't been "lifting" weights in my arms, so it is very hard to say.

Is a EMG a fairly definitive test?
Does it matter what neurologist runs this test or is it important to go to a ALS specialist?

What are peoples twitches typically like?

Thanks again
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Old 08-24-2007, 02:31 PM #9 (permalink)
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The EMG should be run by someone familiar with ALS. Twitching is to me almost like when I was pregnant and the baby kicked me .That how mine feels under my skin.like a tiny kick. in different places. some are like worms under my skin and some are like pops they are all different. Atrophy is a smaller look or a dent in the area effected. My hands are flat and my calfs have dents when I stand on my toes.also some parts of my body feel like soft marshmellows I hope that helps God bless Pat
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Old 08-24-2007, 02:43 PM #10 (permalink)
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Midnight,

Your symptoms are concerning, you need to get to a clinic that specalizes in neuromusclular issues (ALS clinic are the best and have the most qualified neuros).

You may also want to get tested for lyme, with the swelling and waterretention, is a symptom of lyme, not usually ALS until it's late in the disease. There are exceptions to everything.

Of particular interest, you said yoru left leg was "hypersensitive", do you mean your reflexes are pretty strong or hyperactive?

The fact that your toes want to point up....did that neuroolgist "scrape" the bottom of your feet? Do they hurt? This could be a sign of long "tract" changes.

Also, your weight loss is concerning, that is not normal. Do your shoes fit properly? Does you tongue have "teeth" marks on the sides and is the center line straight or crooked when you stick it out?

Do you see any asymmetries in your limbs / face?

YOu need to call a clinic. The MDA website will show one close to you, look in the MDA ALS division website. Also, if you give us yoru location, someone here will know one close. All you have to do is call the clinic tell them what's going on, they will see you.

There are thousands of things that can cause this. i would demand an EMG.

On BTW, your local neuros are usually no good and don't have a clue if your issues can't be seen on an MRI.....most of us here know alot more than most of your local neuros.

Please ask all the questions you want, we will help where possible.

We are all very familiar with everything you are saying, you are not crazy.

Rgds,

Jamie
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Old 08-24-2007, 03:19 PM #11 (permalink)
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The twitching is exactly like when I was pregnant and the baby was kicking me when it is in my colon area. In fact, that is what I told my husband. When it is under my watch it is like worms under my skin or a fluttering. My right leg has been hurting off and on for over a year. It is almost like when you have the flu and your skin is sensitive, but that leg does not function as well as the other. I just stuck out my tongue and it points to the left, there are indents that I imagine must be caused from my teeth on the edges. Is this what you are referring to? It does not have a line down the center but does not seem straight, more pointed to one side.

I actually do have slight asymmetries in my face, and was EXTREMLY offended that my brother pointed it out a few months ago (you know how brothers can be), but I attributed it to having my lips injected with a filler and it being put in on one side maybe slightly more than the other (now you know my vain secrets), but I kept smiling yesterday and noticing that I had to work to make my smile and face seem the same on both sides. I keep telling myself I am imagining things.

What is a tract change?

I will look for a local clinic for nothing else than to shut my brain down for awhile. Thank you so much for your kindness. Hopefully it is just nothing and I can find someone to run a few tests and send me on my way. You are wonderful and kind people.
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Old 08-24-2007, 03:30 PM #12 (permalink)
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LOL! These doctors, don't ya just love em?

You can bet your a#% that if they had your symptoms they would not let their fellow doc dismiss them with a "virus" and "come back in two months!"

I hope you are near a major city that has an ALS Clinic. Most neuros like everyone has said don't know jack about ALS.

Please let us know how your are doing and if and when you get to see an ALS specialist.
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Old 08-24-2007, 03:42 PM #13 (permalink)
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Where are you located, you need to go to a large, specalized facility, most likely a teaching facility / university.
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Old 08-24-2007, 03:54 PM #14 (permalink)
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I am 1/2 way between Los Angeles and Santa Barbara, so I should be able to find somebody I am sure if I don't get lost on the freeway
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Old 08-24-2007, 04:28 PM #15 (permalink)
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Hey Midnight- you'd think those left coast docs would be more compassionate!
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