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nprr

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Feb 4, 2013
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Learn about ALS
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PA
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Philadelphia
Hello,

Like many others I found this forum to be invaluable in getting some much needed answers. I'm not trying to self diagnose but rather fit together puzzle pieces I feel my neuro may not be seeing or simply ignoring. I'm trying to determine if these pieces have any significance or are coincidence.

I'm a 43 yr old male. About 7 months ago I developed a finger drop in my right hand, general hand weakness, partial wrist weakness and I believe partial arm weakness followed around the same time. All of a sudden it became impossible to use a mouse (couldn't click), write, open a bottle of soda, untwist the gas cap. Even turning the ignition key was difficult and I had to use the palm to help turn it. Shaking hands became awkward as my index finger curved in so much and got in the way.

All seemed to happen overnight. It had a "strange" start with a lot of pain in the forearm and wrist soreness for a few weeks after the occurrence. The pain went away but some soreness in tendons still remains. Over the next few months I had a NCS/EMG done and both were abnormal with NCS showing inflammation of nerves. Over the past month there's atrophy in the tricep and deltoid muscles. Admittedly, I've been favoring my left arm and hand.

The puzzling piece is that over the course of the last three months, these symptoms began to improve. The finger drop is still there but much less pronounced. I can now shake hands once again. Dexterity has been improved but not by more than 50%. I can write once again and with some speed (handwriting is not back to normal but looks like my own), I can use the mouse better, I can open a soda/Snapple bottle, untwist the gas cap and, with some effort, turn the ignition with 2 fingers. Progress has been slow but measurable. I mentioned this to my neuro but he seemed to gloss over it. Yet, he's not making the ALS call just yet. However, when I pressed him to guess at a diagnosis, ALS was his guess.

Are the improvements I'm experiencing are even within the realm of ALS? I've had no other symptoms in other limbs and generally feel fine (maybe not so fine mentally).

Thank you in advance for your help. I can't tell you how much respect I have for and how much I admire those that contribute to this forum. You are making a difference in people's lives daily whether they come back to thank you or not. On behalf of all of them-Thank you!
 
Have you thought about a second opinion? I don't have als, but from what I have read from others here once the problem starts there is no getting better. It sound like you do have a problem going on maybe not als but a second opinion could help. Have you had any other tests done?
 
Welcome.

I notice my symptoms are more intense some days than others... But no, they don't go away. If you want, you might ask our resident EMG expert member to review & interpret your test results. His name is Wright.
 
vickim and ottawa girl - thank you for the quick responses.

Other tests have been done. I had an MRI of the brachial plexus (to look for lesions) and the neck. The brachial plexus MRI came back normal but stating "technical limitations due to body mass" (a euphemism for me being fat). Cervical MRI showed arthritis, degenerating discs, bone spurs, and a stenosis-don't recall where but consistent with possible weakness in the tricep. Bloodwork came back ok. The NCS was also done on the left arm and was clear. EMG was done also on the left arm and right leg-both clear. That was all 2.5 months ago.

I, too, think there's something non-ALS going on but serious nonetheless. I'm getting frustrated as I am already on the second opinion. The first neuro ordered all the tests to date, did a full exam and concluded that it's either MND or effects of diabetes which, at the time, wasn't controlled. I told him I was beginning to see improvements but, from his demeanor, I could tell that he didn't believe me. So he shuffled me off to a specialist.

The specialist turned out to be the ALS expert for a local university. He also did a full exam but seemed to dismiss any possible improvements or effects of diabetes (not sure if that really plays into it or not). He ordered an EMG on all four limbs. Given his specialty I'm not sure if he's looking for ALS or looking to rule it out. Logically I suppose the approach makes sense. I'll look to get a copy of the results and have Wright look at them should anything come back abnormal.

Thank you again for your help. I just didn't want to dismiss something meaningful just because the docs were. They may see us for 30-60 mins every few months but we spend a lot more time than that in our bodies and have a lot more data than they do. Sometimes we have a lot more practical knowledge as we're preparing for a diagnosis or living with the disease. A friend of mine who's been dealing with many health issues over the past 20 yrs always says "we're not just the patient but also part of our treatment plan."
 
I can only echo ottawa girl's comments, some days are better then others but no never what I would call improvement. Cold renders my weak hand completely useless but when warm I still have some function, in general however it is a steady, progressive loss of strength...
 
What was your diagnosis after the abnormal EMG? I have my good days and not so good days but once I lose something it's just gone for good so far.
 
There can be many causes of the weakness,, but for us, once its gone, its gone... sounds like you may have something else to me, but not being a doctor... from what I understand about EMG 's, its the denervation (which can be caused by lots of things) and lack of reinnervation that indicates an ongoing problem like ALS. Good luck and talk to your doctor.
 
I'll echo prior comments and say that my PALS does not improve....ever! That being said though, he does have some days that are better than others. The cold weather seems to exacerbate his symptoms and intensify his inability to perform certain functions. Nonetheless, he has never regained any of the functions he's already lost. Take care and best wishes.

Ruth
 
Thank you all for the quick responses and good wishes. And for reassuring me that these small improvements may be a very significant clue to my condition. I'll certainly share any new information when I get it.
 
HI

The fact that you've noted improvement AND had an abnormal NCV both point away from ALS. Also the facts that you've experienced pain in the hand/forearm with the weakness point away from ALS.


Weakness that happens seemingly 'overnight' is another indicator away from ALS.

I'd continue on with the second specialist and have them redo the EMGs and NCVs as appropriate.

Obviously something caused the loss of use in the finger--but it sounds more like it could be something pinched--and not necessarily from the neck--though that's possible with spinal stenosis seen on the MRI. I'm not a doctor, but it sounds like they may have jumped to thinking ALS a bit too soon. Things need ruled out.

Our saying here is that it can only be ALS when it can't be anything else.

My issues started very similar to yours--I suddenly couldn't use a finger on my left hand. That progressed to weakness throughout the arm that spread to the other arm. Turning keys, pushing buttons, opening jars--are all things of the past for me as well and I also have abnormal EMG/NCV--but because the NCV was abnormal--the ALS specialist does NOT believe I have ALS-so try not to worry and let them sort you out.

I should also mention that the neuro I saw first was sure I had ALS based on the weakness and loss of function. I still choose to believe he was wrong and I'm still here two years later.

Good luck to you.
 
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Thank you, again. I've read most of the above in my extensive (and sometimes too extensive) research about ALS but it was very helpful to see it summarized and connected. I'll bring it up with my neuro next time and see where it leads.
 
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