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Jamiet

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Hello all,

I've read alot of the stories here and would like to share mine to get ordinary lay persons opinions whom are living these nighmares that we share. My symptoms started in Aug 2006 with widespread twitching. Nothing thought of it, however, went to neuro in 9/06. Stated it was anxiety / depression. 10/06 noticed my left arm was smaller than right. This put me into a real panic, based upon my research and the confirmation from my wife. Her words were "your left arm shrunk" when i pointed it out to her. Since then, the twitches have changed course, moving from all over, and not real focused, then to "electricity" type in my legs and certain leg muscles, now to like little popping, here and there and sometimes a "hot spot", such as my abdomen for about a day and my left arm on and off. I and only i notice the following symptoms have also progress in the last 30 days. I've got scallop marks and a rough tongue, and it appears to be smaller, specifically, the left "driver" side, although, this could be nervousness and me examining it so much. Also, for the last few days, it's like burning and tingling, or just irritated. Some quivering, but not alot and not all the time. My right foot, the heel seems smaller and my boots are definitely looser. I've had episodes of clumsieness and dizzy spells, throat hurting. I also get the chills alot. Had extreme fatigue for about a month, but is a little better now, however, it seems from about 3:00AM to 10:00AM, its really difficult, can' sleep and then can't get out of bed. My hands and forearms hurt in the mornings, to the point my wife has to massage them. My thumbs and the area around them appear to be atrophying, but it's minimal and no one else can see this except for me, but it seems pretty symmetrical on both sides, happening at the same time. My right leg also feel funny and the reflexes are brisk, noted by neuro in houston. They used to be normal?

I've got this ticking noise that i and only i can like hear or almost feel, it goes from the back of my head / neck down the base of my spine. Really hear this at night or in the morning, in bed or when the phone is to my ear.

I've had all the MRI's, about 40 tubes of blood and two EMGs, all clean and normal. The latest EMG was Oct 30, which was within normal limits, no denervation, but i'm almost sure they picked up facultations, as i could hear the ticking. I've seen 4 neuros, including one at Houston Methodist ALS Clinic, but this was Oct. 30, and it seems alot of progression (the foot, tongue and thumbs) since then. Seen another neuro a week ago, showed him my tounge, but he says again, he's followed 100 to 200 ALS patients in his history and i dont show the signs, come back in 1.5 mos.

What do you guys think, as i will either have to not be able to walk, talk, eat, it seems before they become concerned.
 

liz

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Hi Jamie -

If the neuro scheduled you to come back in 1.5 months, I'd say they are keeping a close eye one you. Scan the forum for awhile and you'll see that the diagnostic phase with neuro problems is lengthy, stressful, and frustrating for people. That an ALS specialist told you whatever you have doesn't look like ALS is encouraging. Hang in there.

Liz
 

CindyM

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I agree you should hang in there. Symptoms for a lot of diseases, I hear, mimic ALS, which is why it sometimes takes so long to figure something out. The best thing you can do is to keep positive, keep busy, and keep going back to the doctors. I know this is easy to say and hard to do but we are here for you. Keep in touch. Cindy
 

cartman

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Hi Jamiet:

Many of your symptoms are what I experienced prior to being dianoised with als. I was first diagnoised with poly neuropathy and after 3 months it didn't fit the symptoms so I was sent to St Louis University for tests. I returned 3 times over a 3 month period before all the tests confirmed I had als. My symptoms started with gait and stumbling. The twitching started in my legs and progressed into my trunk and arms. My muscles got smaller and the strength started to go in my legs . Soon I was unable to walk. I had good upper body strength so I could push my self to a standing position. I have just started having trouble eating and drinking liquids. I have skeltal pain. I was told this was not ordinary as als patients have little pain. This has not been my experience as my body cramps from the legs to the neck. I am unable to sleep in a bed as I have no ability to turn or raise my body. When I fall I am trapped as I can't even crawl. I have signed a living will. Living with artificial life support is not my idea of living. What I can say about als is that it is a mean disease with a constant reminder that it is terminal. My caregivers are wonderful loving people who love and care for me with kindness. They constantly remind me with their love and affection that there is reason to let the disease determine the length of my life. Hang in. Cartman
 

Jamiet

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Thanks for your support. I've just obtained my 4th neuros report. It's shows i'm healthy and he's completely unconcerned with MND. It's quite interesting i feel this going on, telling my symptoms. I truly feel i'm on a downhill slide, of which i can't find the end yet. The only thing he found was my reflexes were brisk, but symmetrical?

Have any of you experienced this, whereas, you are telling everyone (dr's, spouse and family) what you feel going on, they are all looking at you like your crazy or something. You know when your body is telling you something, i know something is happening. I used to be strong, outgoing, always outside, now, i can't get moving. They are all saying stress, anxiety, depression, which at this point would be a good think, but i feel it's only a matter of time before that diag. gets changed somewhat. To what is the real question.

Specifically, have any of you noticed the ticking in from the head, down your neck to spine. Can't feel it, it's like i can hear it?
 

Lindoglvr

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Hi Jamie,

I am not diagnosed as of yet either. I have had symptoms of stuff for over 2 years. I was thinking I had MS, since Lyme's, Lupus, other nasty disease based on my symptoms have been ruled out, but now I think I have a MND as I have fasciculations in my tongue, more cramping in my extremeties (with pain with the severe cramping), unlitateral weakness in my soft palat (I'm a speech pathologist, so know what that looks like) and also show scalloping on my tongue now. I also get cramping in my rib cage when I stretch and sometimes for not reason. I've also had some times where I can't catch my breath or take a deep breath and it's not related to my asthma.

My latest MRIs showed only spinal "thinning" which one radiologist online I spoke with, said is synonymous to spinal atrophy. I don't show signs of demylination, no glowing portions or anything like that. My MRA of the brain showed no aneurysms or anything wrong with any of my arteries in my head and neck, which is good.

I supposed when I see my nuero on the 18th he'll be wanting to do EMGs again and maybe evoked potentials, as it's been 2 years since the EPs and a year since my last EMG, which was only done on left side a year ago.

I think I see a little atrophy in my muscle below my thumb on my left hand, which is the hand I get the most numbness in and will drop things and be clumsy with, more than my other side. Most of my symptoms have been on my left side, but now on my right.

I can still walk, but have troubles with stairs with fatigue. I now notice more arm weakness at times too.

There are still other things that can mimic MND, such as really severe cases of lyme's, heavy metal poisoning, etc. Also there is supranuclear palsy, which can be pretty nasty. That's what Dudley Moore died from and it took him a very long time to get a diagnosis. People used to think he was drunk, when he wasn't

Anyhow, I feel your pain and frustration. I hope you and the others on this board will get answers soon. I almost think the NOT knowing can be as bad, if not as bad as knowing. At least if we knew, we'd know what we had to deal with and could plan accordingly.

This is a good site. I've only been coming for about a week, since I got my last MRI results.

Take care,

Linda
 

Al

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Hi Jamiet. I can't say that I remember anyone complaining of ticking noises in their heads. I get a clicking noise sometimes in my neck if I'm sitting up and move it but only one click at a a time. You have a definite puzzle there. AL.
 

DavidGL

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Hi Jamiet,

I'm another one on that "not yet diagnosed but seeing the neuro at an ALS clinic" list. Funny you mention that clicking thing. I get something like that from time to time...it sounds sort of like something dripping but comes from in the skull. I first noticed it some time after having some crown work--long before I had any of these MND symptoms. I figured it is from something in the eustachian tube, since mine tend to block easily.

IMHO it is best to avoid pointing out to the doctors your visible physical symptoms. Let them notice on their own--which they should be able to do. I know I've gotten to the point where I note every little thing that *seems* different, but I'd rather have an objective person notice it and ask me about it. That way I know it is not in my imagination. I think that when people start pointing out every little thing and acting very agitated about it, the doctors size them as hypochondriacs.

One of the things that strikes me after reading so many testimonials here, and listening to what my neuros are telling me, is that there seems to be quite a few people around who have this malady that we might call "on the verge of MND". Some people get pretty far into it too (like some very obvious loss of the use of muscles) and still do not show up on EMG. So they don't get diagnosed. And it can go on for a long time. My first neuro told me he thinks I have "bulbar palsy" because all he could really see was vocal chord atrophy. After watching me for 3 months and not being able to find a cause he sent me on to the ALS clinic. By the time I got there, things had gotten somewhat worse but not enough for the neuro to provide a diagnosis. She did note *some* minor brisk relexes--which was a change. Also some balance problems and tongue scalloping. Evidently it was enough to have me become a patient (I go back in 2 weeks when she is expecting to decide on lumbar puncture after reviewing all of the latest labwork). This has been going on now for almost a year (which is the blink of an eye compared to other stories I have heard here). So get ready for quite a ride working your way through the gauntlet. On the one hand you might get "lucky" and get a quick diagnosis of ALS (some luck...huh?) or on the other you may end up floating through the system waiting and waiting to see what it becomes. You can't blame the doctors as there is no test for ALS, just the rule out of everything else and a big enough symptom set. In my case, my first neuro and then the staff at the clinic, really do go out of their way to provide help in symptom relief. I can almost hear them thinking "this poor person is probably on the road to an ALS diagnosis, but I can't tell him that".

At this stage, having seen so many complaining of these "almost ALS" symptoms, I am beginning to wonder if there isn't some environmentally-caused illness going around. And I wonder if we "almosts" don't annoy the heck out of the truly diagnosed people here. But they do seem to put up with us! :-D

I am taking one day at a time because each day that comes without loss of the use of a limb or lungs or throat is something to be savored. My legs are stiff and crampy but they still work. I can't get as much done on the weekends as I used to...but I can still get things done. I eat a lot more slowly than I used to...but I can still eat. And I can still drink some tasty ales! With any luck, I can make this last another ten years to retirement before I get truly disabled. That is the kind of hope that we "almosts" have and it is sad to hear the stories from those who clearly do not have that kind of hope. :(

DavidGL
 

jimmylee

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hi jamie

sorry to hear of your problems, iwas just diagnosed w/ als my symtoms started w/ leg cramps,lost use of left hand about three months ago atrophy in left index finger. in less than three months left arm, right arm and left leg have been affected. My symptoms are getting worse faster than neuro expected thats why i'm looking into this site to get more info.If i can be of any help please let me know and god bless
 

Jamiet

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David,

Sounds like were in the same boat, except i should have about 33 more years to retirement, which makes me 32 and wondering how this happens at this age?...My symptoms have progressed pretty rapidly. The neuros even got me seeing shrinks at this time because of the hypochondriac think you mentioned, but, i'm a smart fellow and know my body and know what's going on. Yes, i'm one of those guys that are so nervous in the exam, i look like an idiot, trying to point things out to them and can't sit still.

One item of interest is your tongue atrophy. What did it look like to start and how has it progressed as far as how it looks, feels and works/moves?
 

Jamiet

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David, Also, this is 4 neuros that absolutely said NO ALS, hopefully i'm nuts! That would be good at this point, the thing is, i know i'm not. Jimmylee, i'm so sorry to hear of this. I guess, from all that i've read, seen, is that live each day to the fullest, make the most of your family today and don't ponder on the future too much, enjoy today, as hard as it may be and fight like hell to make it to tomorrow.
 

felicia

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hi cartman. i also experience pain with leg and arm cramps. my doctor finally gave me morphine so that i can sleep through the nights. i find myself in a sitting position in my bed when i wake up. i have a hospital bed and i work the controls. legs up legs down, head up head down. i am going to burn out the motor. god bless, felicia
 

bogey

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i have just joined the site but have been readindg posts for a few weeks i have not been diagnosed but haveing muscle twitching for two months.it started in my left bicep for 3 weeks then quit then i started having them all over.i called my friend who was diagnosed in 1992 and he asked a few questions one being to put my thumb and trigger finger together and see if the muscle pop up. he said he was told by als specialist this was one of the first muscles to be effected.any help will truly be appreciated bogey
 

Al

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Hi bogey. Interesting that you should call it your trigger finger. Are you in the military or PD or just into shooting? I haven't heard of the muscle popping up thing but that doesn't mean it is without merit. Wasting between the thumb and forefinger can be a symptom but usually that occurs further on with limb onset ALS. Do you have any other weakness or symptoms? Benign fasciculations can look like the start of ALS as well as a number of other diseases. You might be jumping the gun on a diagnosis of ALS. A Neuro would probably examine you and say come back in six months. As you are aware I'm sure from your friend there is no one test for ALS and reading other posts here you will find that it can be a long process to get a diagnosis. Welcome any way and keep us posted on how you are making out. AL.
 

bogey

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thanks for reply grampal i was never in the service but did a lot of target shooting with my dad.you make alot of post on this site iwant to thank you for your insight bogey
 
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