Question About Manual Dexterity?

[guwainengle]

Does your hands get real shakey and fingers quiver when one starts to experience manual dexterity issues?

Also when swollowing problems arise- does anyone ever feel like there is something stuck right above their adams apple- or do you just have trouble swallowing?

If one has a normal EMG and a normal clinical exam- by an ALS certified Specialist and within 2 months after the test and being said to have benign fasciculation syndrome- the same symptoms persist and worsen-- should another EMG be done?

How often would one say that a Specialist is incorrect on his 1st diagnosis? When the diagnosis is BFS?

Please help me- I am concerned-

[jimercat]

yes, well i'd say get another exam if you are now having swallowing issues so they can do radiological exam of esophagus, etc...

never can tell with motor neurons.

cj

[guwainengle]

thanks-- I am meeting with the gastro person this week to see if there is any chance of a stricture and have attempted to get another appointment with the als clinic in Hershey. Do you know if when the hands begin to get involved that the fingers and hands get a little shakey? my local dr says it is just nerves and that I am caught up in a symptom-to-anxiety circle that exaserbates the symptoms. Could it be?

G

[guwainengle]

one other question-- has anyone ever heard of the legs and arms all getting involved around the same time -- or usually a single limb onset?

G

[bdyle]

Mine just started in my right leg in Feb. 05, then moved into right arm and hand about 5 months later. Was dx with ALS in Dec. 05, since then it has gradually moved into my left leg, arm, and hand. Hope this helps some. Billy,

[patricia1]

There is a Dx call benign tremers. Which the person has a hand tremer when doing small tasks You even see the head tremer There is a medication for it . I am not saying thats what you have But it iss clearly a possibility. See a neurologist as soon as you can to ease your mind Pat

[tkenny]

Mine just started in my right leg in Feb. 05, then moved into right arm and hand about 5 months later. Was dx with ALS in Dec. 05, since then it has gradually moved into my left leg, arm, and hand. Hope this helps some. Billy,

Thx for your insight bdyle. Did you still have use of that limb after it had spread to another location?

[guwainengle]

I am to see the Director of Neuromuscular Research and ALS specialist at Hershey Medical Center at the end of the month. @ 2 months ago he said he saw no signs of motor neuron disease... Could something have manifested this quickly after a though EMG/NCV and clinical eval by such a qualified specialist or could it have not been detected at the time of testing? I am in real panic mode-- I am meeting with GP today at 400 to see what they are thinking now.

G

[bdyle]

At the time I still have use of all my limbs, although very limited with some of them. Still can use walker around the house for short distance, after that I use my power chair. Have to be careful with arms and hands, have problems holding on to things. They have stopped me from driving, all they let me drive is my riding mow and they're trying to take that away from me. God Bless,

[guwainengle]

How long did it take from initial symptoms in limbs to get to the point you are at now, and are you experiencing any cramping pain?

[bdyle]

It's taken about 2 1/2 years to get to the point I'm at now. I do have a lot of cramping in my legs and some in my arms and hands, right now it's worse in the legs. My initial symptons started in Feb. 05.

[BWk]

[QUOTE=guwainengle]one other question-- has anyone ever heard of the legs and arms all getting involved around the same time -- or usually a single limb onset?


Do you have symptoms in the legs and arms? I started with symptoms that way [and in the face] all pretty much at the same time, but from what I know is unusual. Also had swallowing problems early on, but that has stopped. First symptoms in Jan. 2005. Barry

[guwainengle]

mainly left face and both leg fasciculations-- swallowing problems have been checked by gastro doctor and they dialated throat and it is a little better-- gastro doctor says no sign of ALS-- but my left shoulder and both hands have slight shaking/twitching in it-- legs still twitchng and legs are somewhat shakey-- I met with ALS Clinic in Hershey and they say no sign of motor neuron disease-- But since May 15 I have gotton a little worse-- I am meeting with then again next week-- I have met with 4 different neurologists including an ALS specialist and they all say no---- I also have cramping in shin areas and above wrist areas-- all seemed to arrive @ same time -- but all EMG and NCV clean and clinical exams are OK-- I am puzzled and all doctors document no ALS-- I hope they are correct but Iam very concered-

G

[hboyajian]

G, You obviously have symptoms that are of great concern to you. If doctors at a respected ALS clinic have determined it is not ALS at this point, I would trust that opinion. However, you do have something and it will probably take a number of diagnostic tests and a persistent physician to figure it out. There are a number of other illnesses that share similar symptoms with ALS. Have you been tested for Lyme's disease or inflamatory myopathy, to mention two of the many possibilities? There is a lot of discussion about this in the "Do I Have ALS?" section of the forum, and people to talk to who have been going through this process themselves and can offer specific information.

My dad did experience weakness and muscle atrophy in all limbs at about the same time. His ALS began in his core muscles of the neck, torso, and back, though he had an episode of a problem with his arms and legs 2 years previous to that that appeared to clear up (I don't know if that was part of the ALS or something else). He also did have a swallowing problem that felt like some kind of blockage in his throat. A chiropractor determined one of his vertebrae was mi-saligned and the bone was pressing into his esophagus. This was corrected and his swallowing improved for many months. Later on it worsened considerably, but it was the muscles in his throat that didn't work anymore, not the blockage.

[puzzled36]

G- You sound like me. I started with a pressure/lump in my throat and head aches, then cam twitching and cramping all over. Now I get a tremor in my face and both arms/legs. The tremor/shakes happen when I'm upset or trying to do fine motor stuff. Like if I hold my hands our straight, the middle finger has a tremor. I also have occasional slurred speech, getting a little worse and now have a 'dent' on the right side of my chin, looks like atrophy. I have had EMG's done by one of the top ALS specialist in St. Louis, he says no ALS. I had single fiber EMG that was abnormal - increased jitter- which you can have with ALS but he thought maybe myasthenia. I'm on meds for that now but they arent working. I go back in 2 months. He said "you do not have ALS" I hope he's right.. Anyway, I know exactly how your feeling. Hang in there.

[guwainengle]

I appreciate all the positive support- And at this time, I can only hope that the ALS specialist is correct. I have been tested for Lymes two times and the results were negative,but the other suggestion is worth the pursuit. I am positive the shakyness is getting worse and there is a little bit of soreness in my shoulder muscles also. I can tell when I attempt to work out that my strength has been comprimised, but not substancially. I have heard the suggestions that it is all stress and anxiety and nerves-- from the doctors- but after feeling like I do - that is a tough one to accept. After reading alot on ALS, it just seems like many of my symptoms I had prior to the reading have matched up. I am only a little more than a week away from another visit to the ALS clinic and if this time we have positive news I will have to look at any other possible answers. Wouldn't you think that a specialist that is in neuromuscular research would suggest other conclusions? or make attempts to identify other neuro malfunctions. I would think so. And my final bit of concer is that because ALS is so difficult to diagnose-- How can a specialist say no to ALS?

G

[patricia1]

The gold standard test for lymes is a Spinal Tap Pat

[puzzled36]

I asked that. Mine said that at the time of the EMG you do not have ALS. But they tell you to come back in 6 months - so I think if they were confident we didnt have it, they wouldn't want to retest. Or maybe they are waiting for whatever you do have to fully present itself. How old are you, by the way? I'm 36.

[guwainengle]

I am 42 and until this past January -- never had a medical issue.. I guess that is one of the reasons I am extremely worried. Especially when it comes to a neuro issue.

[patricia1]

I appreciate all the positive support- And at this time, I can only hope that the ALS specialist is correct. I have been tested for Lymes two times and the results were negative,but the other suggestion is worth the pursuit. I am positive the shakyness is getting worse and there is a little bit of soreness in my shoulder muscles also. I can tell when I attempt to work out that my strength has been comprimised, but not substancially. I have heard the suggestions that it is all stress and anxiety and nerves-- from the doctors- but after feeling like I do - that is a tough one to accept. After reading alot on ALS, it just seems like many of my symptoms I had prior to the reading have matched up. I am only a little more than a week away from another visit to the ALS clinic and if this time we have positive news I will have to look at any other possible answers. Wouldn't you think that a specialist that is in neuromuscular research would suggest other conclusions? or make attempts to identify other neuro malfunctions. I would think so. And my final bit of concer is that because ALS is so difficult to diagnose-- How can a specialist say no to ALS?

G
Most neuro did not give that dx unless they are very sure. It is a death sentence,how could they say that until they are very very sure. I had to wait 6 years and by then even I knew it was ALS it was so obvious. So dont rush them . The harder is is for them the better for you. It means you dont have enough symptoms for the dx. Mine is so slow thats why it took them so long. Good lucjk Pat

[Jamiet]

I agree with you.

My ALS spec. told me and my buddy with teh ALS assn., that with 100% certainty, it was not ALS. This was two / three appts. ago. In the beginning they told me it was all anxiety...i needed to get off th einternet, quit looking in the mirror.

Now, last appt....even with reflexes rated at a 5+and all kinda other stuff, i asked her if she was still 100% sure it wasn't ALS....her response was she was "pretty confident".

I'm an accountant... i never give anyone a 10 out of 10 on anything..nobody is perfect, nobody. I never promise to anyone with 100% certainty, anything. Nothing is ever 100%, except of course...birth and death.

It seems my doc may have to apologize to me...i desparately hope she's right, but if she's not....she has caused me alot of real heartache, literally. I mean, with my wife...i've had to hear it all because a doc tells her 100% and here i am telling all of them... they are wrong..

We will know next monday, July 23 who was right. I hope i was wrong.

The moral to thsi story, is that fascis are all over the board...some have them all the tiem, some don't...everybody is different in progression and symptoms and take what the docs say with a grain of salt and trust your instincts and listen to your body more than you listen to anyone else.

If you have any doubt in your doc, get another opinon.

rgds,

jamie