Old 06-03-2008, 01:58 PM #1 (permalink)
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Default Another Wait and See!

Well yesterday was the 4 month appointment with the neuro and as we expected (wait and see). The neuro examined my husband and said that he has progressed significantly since February. The right and left leg are compromised and he is showing muscle atrophy in his right hand and and thumb area. I asked the neuro if he is still sticking to his diagnosis of PLS instead of ALS and he said at this point he will not be able to tell until he does the EMG/NCV in early September. I asked the neuro for something for depression as this is depressing the heck out of my husband and myself as well. He gave him something to try and told my husband to try it that it may help him cope. I told the neuro that I was under the impression that ALS was typically lower motor neuron (throat, breathing, speaking etc and he said no that ALS can be everywhere). He also said that since February he has received four new patients presenting with symptoms of ALS/PLS which he said is extremely rare and a large number for the area. I told him to look into this forum and he would be amazed of all the people who have the same medical similarities. So my friends this nightmare continues for us. Take care, Gracie
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Old 06-03-2008, 03:03 PM #2 (permalink)
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Default dear gracie

i am so sorry to hear how much your husband has progressed and his depression is very understandable. i can not understand why his neuro wants to wait till september for the emg if he has visiable atrophy, is it the only time they can fit him in for it?.
my heart goes out to you both having to wait and not know for sure.
you are both in my thoughts and prayers.
god bless
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Old 06-03-2008, 04:13 PM #3 (permalink)
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Caroline you are such a wonderful person and your comments always somehow help. I think probably the neuro wants to wait the full six months because he had the last EMG at the last of February and his next apt. is September 2. These EMG/NCV tests are painful as you already know and my husband is having another Radio Freququency procedure for the LR & L5 in his back on May 24th and then another one around July on his neck which I might add having nothing to do with the motor neuron problem. Believe me if my husband never had another emg it would be too soon. Thanks for your help and may God Bless also. Gracie
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Old 06-03-2008, 04:25 PM #4 (permalink)
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Default gracie

was his last emg in febuary ok? did they do the test all over including the area that has now got atrophy? i would think the last emg may have been inconclusive if he has visiable atrophy and they wont say if it is pls/als. so like you said they want to wait a bit longer and see what happens. i dont want to get your hopes up too much but i do know of some pls'ers with some non progressive or slight atrophy, not enough to class them as als. just something to give you both a bit of hope.
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Old 06-03-2008, 07:16 PM #5 (permalink)
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Ok Guys They tell you 3-5 years is the wait and see period . The difference is one stops progression or severely slows ,the other continues to progress and can speed up . One shows atrophy on the EMG the other doesnt . Like ive said before do the sqeeze test for the hand strength and the leg test for the legs
this way you can keep track on a weekly basis . otherwise you'll be waiting for the doctor to tell you . Geo
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Old 06-03-2008, 07:28 PM #6 (permalink)
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Hi Everyone,
The last EMG in February ( he had weakness in right leg only)did not show any atrophy in legs or arms/hands but he has progressed a lot in 4 months. When he told the doctor that his right thumb was weak and he has been dropping things then the doctor had him squeeze his hands and he said the right had is weak and he pointed to the spot on the right side of the thumb but down about and inch (it sort of looks caved in) and he said that was muscle atrophy. Is atrophy only in ALS? I told the neuro to come to this site. Gracie
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Old 06-04-2008, 09:08 AM #7 (permalink)
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Hi Gracie,

I'm sorry for all that you are going through.

The EMG does not identify atrophy. Atrophy is visually identified. However, the EMG can pick up where there is nerve damage.

As for atrophy being only ALS, this is not always the case. Over time lack of use can also bring on atrophy. I have found sites stating atrophy as a symptom of PLS, however this would most likely be from not using the muscle the way one once did prior to disease onset.

I guess one has to look at the bright side, even if it is now ALS at least the progression is much slower than typical ALS. If it truly is ALS now (but let's pray it isn't), your husband's would be considered upper motor neuron dominant ALS.

By the way, you state that progression as been rapid in the past 4 months, but your husband can still walk unassisted and has even attempted bike riding. I know he has gone from what he can do to what he can't, but this is still rather slow. Fast would be from walking to not walking or needing assistance in 4 months. Many PLSers, even on this forum, has the most progression in the first 2 years from onset and then slowed down.
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Old 06-04-2008, 10:30 AM #8 (permalink)
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Hi sral,
Thanks for your response. Yes my husband is still walking, not well but he is still able to walk and I would guess the bike riding is a thing of the past, no balance getting on and off the bike but can balance it well while on the bike. The fall he had in April I think scared him enough into realization that he can't do that any longer. Funny, last year we were saying well thank God we can at least bike ride. When he had his emg in February he did not have the muscle atrophy right hand. He is right handed so he uses this hand constantly, makes me wonder (why) the muscle atrophy because this is his predominate side and the one his uses most. Sral do you have PLS or ALS? It just feel like.......with every new loss of function or new symptom there is a greater feel of fear that embarasses you. Last night was a bad night trying to sleep. As I tossed and turned going over this in my head over and over again my husband said, whats the matter can't you sleep which of course means he was tossing and turning and thinking also, as I glanced at the clock it read 2:45 am (yep this is a typical few days after the neurologists appointment) and lucky us we get to go to the primary doctor tomorrow to give him an update. I don't see much sleeping going on around here for several days or should I say several years. Thanks again sral and God Bless. Gracie
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Old 06-04-2008, 01:13 PM #9 (permalink)
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Gracie someone told me about a recumbant bike thats a tricycle thing ?and she has PLS. And no problem in the sleep Yap im awake at 3:00 every night but im able to get back to sleep ,but its spotty . Worrying will not make it go away ,only make you feel worse . Once you lay your head down for the night you have to shut it off or you'll get sick also . Geo
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Old 06-04-2008, 02:40 PM #10 (permalink)
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Gracie,

No I do not have PLS or ALS. My mom was diagnosed with upper motor neuron disease in August based on a clean EMG. The neuro said it was too early to call it PLS and so it's a wait and see for the next 6 months. She has progressed alot in the last 6 months as well. Her walking is not good either and she cannot do long walks. Walking around the block is a thing of the past. She does use the stationary bike. Something you may want to consider if your husband wants to keep his muscles moving. Be sure though that he does not use it to the point of muscle fatigue as this MAY (no true evidence) speed up progression.

As for the sleepless nights, it's been the story of my life since the diagnosis. The wait and see part of this is what keeps us awake. It's like a heavy weight on us.

Why does your husband find it difficult to walk, is it because he feels weak or stiff etc?
How else do you feel he's progressed? Has he gone from walking well to not etc?
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Old 06-04-2008, 07:41 PM #11 (permalink)
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Geo/sral
My husband can walk with a cane and holding on to something as he walks by. His hyperflexia and knee buckling makes it difficult to keep his balance. Now that the left knee is also buckling you can imagine what his stride looks and must feel like. His legs are weak and going up and down the stairs is difficult because of the clonus of both feet now and lifting his legs to go down each step he will sometimes barely make it to the end of the step and sort of slides across the step now. His legs never were never big and to me they seem very slight and thinning. I of course notice these things after 42 years of being together night and day. Thanks guys you are the best! Gracie
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Old 06-05-2008, 04:34 AM #12 (permalink)
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Hang in there Gracie!
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Old 06-05-2008, 08:11 AM #13 (permalink)
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Gracie this is why i dont do the Muscle relaxers as we need some spasticity to maintain a ridgid posture . Otherwise we are wobbly .And When these Weebles Wobble they do fall down LOL, a little Humor Geo
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Old 06-05-2008, 08:57 AM #14 (permalink)
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You are so right Geo. Let me ask you something, before my husband took the Baclofen his legs were extremely aching and he had facillations which I guess is a result from the hyperflexia which is hyper flexing of the muscles. Don't your legs react like this or are you on something else? I am on a spinning top here just trying to understand this disease and how I can possibly comfort my husband (if that is at all possible). As far as the LOL I totally understand that too. My grandmother used to say, "It isn't a laughing matter but it doesn't matter if you laugh".

I haven't heard much from grandpa Al lately, does anyone know if he is okay. Al if you are out there let us know you are hanging in there, we love you too! Gracie
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Old 06-05-2008, 09:50 AM #15 (permalink)
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I hope I can say that I have been on baclofen for 4 years, both pump and pills and it has been a saver for me walking and using my hands. But, I hope you dont mind a different question, I am going to a MDA clinic soon and I was wondering what info they will be able to tell me and how soon. Thanks !
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