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thompsonds3

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i had four emg's and nct's, five neuro's, includes second opinion before accepting this monster. believe me you will definately know when it really als


Hi Thanks for your response. I'm pretty sure I understand what you are saying, but I wanted to double check. You're saying that multiple Neuros were able to diagnos you with ALS before you were hit with significant debilitating symptoms? Forgive me if I'm not following. Thanks again.
 

sadiemae

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I believe pearshoot means that it took that many Dr saying it was ALS before pearshoot would accept it. Nobody wants to believe a ALS diagnosis and many go to several Dr before accepting the D X.
 

thompsonds3

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It is 40 days from December 22 to February 1 -- two days short of six weeks. Did you go to a doctor with your complaints of pressure, loss of dexterity, difficulty typing, difficulty taking money out of your wallet, and difficulty operating a computer mouse in those 40 days? If you did go to one or more doctors during that time, what happened during those examinations? If you didn't go to a doctor during that time, why didn't you? From the description of the problems you were having, I would think that you would have been banging down doors to figure what was wrong with your dominant hand.

And, given your previous remark that you didn't start researching ALS until the beginning of March, there was a two to four week period during which you were twitching with unexplained symptoms in your arm and hand. What were you doing about these problems during that time?

I did see Doctors in that time. I actually went to the ER the day after christmas, because I had no PCP. I hadn't seen a doctor for any reason in seven years prior to that. They did a CT scan and blood work. Healthy CT Head. My Parents PCP took me in a couple of days later. I saw him once a week for about two months. He referred me to the Neurologist that I first saw toward the end of Jan. I then had my MRI on the 21st of feb. The following week was the spinal tap.

MS was the initial condition being ruled out. MY concern was that as well as GBS, CIDP or Lyme. It wasn't until after those conditions were mostly ruled out that I started reading about ALS and since.

Again, I'm sorry. My concerns are probably unfounded....And again, thank you for taking the time to respond to my questions.
 

sadiemae

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Please ask these questions to the people at. A b o u t. bfs. Com. They will be it more patient with ü
 

Toto's Dorothy

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"Mostly", you said it; we didn't! Do you think maybe you put your brain in high gear and your body is just idling?

Sadie, is this what happens when you stay up past 11 p m? You go girl!
 

notme

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You have never answered my question regarding the NCV / EMG results. What LIMBS did they do an EMG on? Did they rule OUT carpal or cubital tunnel. Again--those are the MOST COMMON reason for issues in the thumb/forefinter/pinky

With 5 months now of 'symptoms' believe me when I tell you that there would be ATROPHY if it was ALS.

It's also possible that there is an issue within the joint of your thumb. ALS doesn't cause your thumb to dislocate or pull out of the socket.

You've apparently totally discounted the possibility of fibromyalgia--why? It's the most common cause of wide-spread feeling of weakness--and very OFTEN starts after surgery, an accident, vaccines, etc. VERY OFTEN. It causes sensory issues as well. The nerves themselves are 'hyperactive' and much more sensitive than normal--which causes a wide variety of symptoms including numb feelling, tingling, weak feeling and pain or discomfort.

As a screen printer--it's so much more likely that you have a repetitive injury going on. Again--something you seem to totally discount.

Clean EMG = no ALS. Period. Doesn't matter if it was a 'full" EMG--nerves are nerved. Those with ALS don't have a clean EMG in any of their limbs when they are tested--even ones that don't have symptoms yet. The damage is being done long before the patient sees symptoms.

You have no clinical weakness--clinical weakness is determined by a doctor on an exam--and they WOULD notice weakness in the ankle and the muscles that control it.

The very first doctor I saw found clinical weakness, abnormal reflexes. In areas that *I* wasn't having obvious symptoms in at the time. When I first went, my only issue was in my dominant hand. I simply couldn't use my finger. ONE finger was useless. Just one. It spread, of course, to the entire hand--but the first sign was a loss of function--something I simply could not do. Oh--and now, a year and a half later? We don't know what's wrong with me yet.

My point in explaining that is this: It can ONLY be ALS when it can't be anything else. There are LOTS of "elses" in your case that need ruled out--most likely an issue in the nerves in your hand from your job.

The breathing thing sounds like anxiety--sorry. Not ALS. Als causes weakness in the diaphragm--it doesn't come and go. It comes and stays. My breathing issues got worse pretty quickly.

The hoarse voice--is it YOU that thinks it is hoarse? And why would you think that is an ALS symptom? How do you know it's not a viral issue? In Bulbar ALS--the typical first sign is slurred speech--speech issues that others notice before you do.

You've ignored the possibility of benign fasciculation syndrome--the most likely cause of twitches. Why?

Als doesn't cause body-wide twitches--it just doesn't. Again--not sure why you think it does.

This is a very poor excuse for a qualified physician. You're quick to list symptoms--but seem to simply ignore questions or possibilities that aren't ALS. WHY?

If your first symptom was in December--this is now May. In five months--there would be SOMETHING that was already paralyzed or significantly dysfunctional--to the point that the doctors would see it.

There is no known cause of ALS--certainly no documented cases of it being started by a flu shot. Some people Do have bad reactions to vaccines. My daughter almost died from hers.

You didn't mention what blood tests were done--but deficiencies in B-12 is a common cause of twitches, too-and muscle weakness.

All in all--I'm not saying nothing is wrong--but you have the WRONG condition on your radar--as you've been told by several here--and by qualified physicians.

Good luck
 

Toto's Dorothy

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TURN US OFF, NOW!

See your doc tors, get your answers and then turn us back on (we will be here) and let us know the di ag no sis. Why waste all this time worrying needlessly. Also, as Patty said, don't turn down B F S or any other di sease/syn drome. Also, anxiety meds will help, you just have to give it time to get the right do sage.

Good luck to you,
 

thompsonds3

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You have never answered my question regarding the NCV / EMG results. What LIMBS did they do an EMG on? Did they rule OUT carpal or cubital tunnel. Again--those are the MOST COMMON reason for issues in the thumb/forefinter/pinky

With 5 months now of 'symptoms' believe me when I tell you that there would be ATROPHY if it was ALS.

It's also possible that there is an issue within the joint of your thumb. ALS doesn't cause your thumb to dislocate or pull out of the socket.

You've apparently totally discounted the possibility of fibromyalgia--why? It's the most common cause of wide-spread feeling of weakness--and very OFTEN starts after surgery, an accident, vaccines, etc. VERY OFTEN. It causes sensory issues as well. The nerves themselves are 'hyperactive' and much more sensitive than normal--which causes a wide variety of symptoms including numb feelling, tingling, weak feeling and pain or discomfort.

As a screen printer--it's so much more likely that you have a repetitive injury going on. Again--something you seem to totally discount.

Clean EMG = no ALS. Period. Doesn't matter if it was a 'full" EMG--nerves are nerved. Those with ALS don't have a clean EMG in any of their limbs when they are tested--even ones that don't have symptoms yet. The damage is being done long before the patient sees symptoms.

You have no clinical weakness--clinical weakness is determined by a doctor on an exam--and they WOULD notice weakness in the ankle and the muscles that control it.

The very first doctor I saw found clinical weakness, abnormal reflexes. In areas that *I* wasn't having obvious symptoms in at the time. When I first went, my only issue was in my dominant hand. I simply couldn't use my finger. ONE finger was useless. Just one. It spread, of course, to the entire hand--but the first sign was a loss of function--something I simply could not do. Oh--and now, a year and a half later? We don't know what's wrong with me yet.

My point in explaining that is this: It can ONLY be ALS when it can't be anything else. There are LOTS of "elses" in your case that need ruled out--most likely an issue in the nerves in your hand from your job.

The breathing thing sounds like anxiety--sorry. Not ALS. Als causes weakness in the diaphragm--it doesn't come and go. It comes and stays. My breathing issues got worse pretty quickly.

The hoarse voice--is it YOU that thinks it is hoarse? And why would you think that is an ALS symptom? How do you know it's not a viral issue? In Bulbar ALS--the typical first sign is slurred speech--speech issues that others notice before you do.

You've ignored the possibility of benign fasciculation syndrome--the most likely cause of twitches. Why?

Als doesn't cause body-wide twitches--it just doesn't. Again--not sure why you think it does.

This is a very poor excuse for a qualified physician. You're quick to list symptoms--but seem to simply ignore questions or possibilities that aren't ALS. WHY?

If your first symptom was in December--this is now May. In five months--there would be SOMETHING that was already paralyzed or significantly dysfunctional--to the point that the doctors would see it.

There is no known cause of ALS--certainly no documented cases of it being started by a flu shot. Some people Do have bad reactions to vaccines. My daughter almost died from hers.

You didn't mention what blood tests were done--but deficiencies in B-12 is a common cause of twitches, too-and muscle weakness.

All in all--I'm not saying nothing is wrong--but you have the WRONG condition on your radar--as you've been told by several here--and by qualified physicians.

Good luck

Hi, thank you again, you've been really helpful.

I brought up Fibro to all my Doctors and it was vehemently shot down by them. I personally haven't shut the door on any possibilities. ALS is not the only issue on my radar...and thanks to you and others on this forum it is sliding off the radar.

Carpal tunnel was ruled out, but not cubitol tunnel. At least two of my Docs agreed on that.


CIDP or Myastenia Gravis are on my radar just as much, but I can't seem to get much attention on those
Also, the Neuro who performed my EMG on my right arm in march said it was clean.... So, I guess I have a benign condition that doesn't feel very benign, but that is good. You have talked more sense into me than anyone else. I am listening.

I was tested for B12 and I'm not deficient. And I take a liquid supplement so I should be square in that regard.

As far as the hoarse voice goes, people call me on the phone and always ask if I just woke up. I do feel like I'm having trouble formulating words, to some degree. Slurring words has been a subtle concern of mine for awhile, but I'm really not trying to convince you that these are ALS related. I'm just trying to answer questions.

I haven't ignored BFS. It's just fallen short of explaining my symptoms to me, but thats on me and as I already said, I'm listening to you.

I guess one of the issues I've had is the truth behind it's Not ALS Until it is Nothing Else. My Docs keep telling me it's not MS, not CIDP, not GBS, Not Fibro, not Lyme, not MG, not carpal tunnel, and yes, they said it wasn't acting like ALS.

I'm sorry if I've wasted your time, but I think I needed to do this. Take care. I wish I could do something in return for what you've shared with me.
 

Toto's Dorothy

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The reason you're not getting any feedback on C I D P or M G is probably because the doc tors have "probably" given you your di ag no sis. Cu bi tal Syn drome does fit. You have to have faith in your doc tors. Otherwise, you will continuously shop for a doc tor that may just apease you. I just haven't quite found a reason for you wanting a rare di sease and not some simple fix. Other than the obvious

I don't think anyone can get you to change your mind. Sad but true. I would take cubital tunnel any day! Again Good Luck,
 

olly

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personally i think if all this happened straight after the flu shot then it maybe you had some kind of allergic reaction and in time symptoms will go..............this senario does happen.
as for weakness v fatigue you seem to have fatigue as even a small amount of clinical weakness can be picked up by emg or a clinical exam.
just for the record,als starts in one place not everywhere.
 

Toto's Dorothy

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I haven't quite figured out the quoting process, but read your next to the last paragraph you wrote. You said your doc tors have ruled outall of these di seases, and you believe it is A L S. Just because of notmes statement. That is for those who have real symp toms and te st re sults.

And try an E N T or Gastro for GERD. That's an easy one too though, so I guess that's why the Bul bar ques tions.

Now I'm gone, GOD BLESS your doc tors with pa tience (not misspelled),
 
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sadiemae

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Have they ruled out BFS. You have a textbook case
 

sadiemae

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Have you asked the folks on that site what they think. They have so many members there they actually have a chat room. Instant answers.
 
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