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Just J

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My husband's mobility has been declining for 3 yrs. It first started in late 2005 with numbness in his feet, by Aug 2006 the weakness in his legs was so bad that he had to give up golfing which he loved (he was no longer able to make it through 18 holes even with using a gof cart). In Jan 2008 we applied for a handicap sticker for his car and recently purchased a cane for him. He is still able to go up and down steps but only when necessary. He is very fatigued throughout the day and can not stand for more than about 5 minutes and even sitting for too long becomes a problem. He now spends about 60% of his waking hours laying down. After taking a shower he has to lay down because his legs are tired. We FINALLY have an appointment with Johns Hopkins Neurological center in early September (even though we have seen other neurologist in the Baltimore area for the past 3 yrs). He has had numerous MRIs, brain scans, 2 emgs, and a spinal tap. The "science" is not showing anything is wrong. MS and lyme disease has been ruled out.

I have done a lot of research and everything leads me back to ALS. His walk is stiff, his legs won't bend, his left foot drops. Putting on pants and shoes is very slow and difficult. He is starting to have tightness/numbness in his hands. Otherwise, all symptoms are isolated to his legs, the left leg being weaker. He has hundreds of leg cramps and spasms every day, has had a lot of atrophy in his legs too. My only question is that he has lower back pain. Is pain a typical symptom? Possibibly it is just normal back pain that someone of his age (58) will have after years of heavy sports. He says the pain is managable and does not take pain medicine.

Naturally, no one wants to be diagnosed with ALS but after 3 years no diagnosis is not helpful either. A diagnosis of any kind would at least allow us to plan. I feel as though our life has been on hold for 3 yrs.
 

CindyM

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Hi there! Boy do we have a lot in common. I was so glad to see I am not alone in having things drag on. I'm a little luckier than your husband in that I still get around but there are a lot of us aroudn here who can relate to being in limbo.

Has he been to an ALS clinic? How do they explain the weakness?
 

gbrown

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Back Pain

Just J:

Your husband has a lot of the symptoms of ALS. Like Cindy said in her post, you need to get him to an ALS clinic. I, too have a lot of back pain. One of the physical therapists that worked with me said it was coming from so much sitting and laying down, He said the human body is designed to be upright and walking for a lot of the day and while sitting down it puts extra pressure on the back causing pain. I have a half pillow that I use in my recliner and my power chair. That helps a lot.

I also use Backlofen muscle relaxers for the tightness and spacticity in my muscles. It is one of the oldest and least expensive of the muscle relaxers but works fine.

Good Luck,
Gordon
 

wright

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I read a lot of your other posts and it sure sounds like it could be some type of peripheral neuropathy.

How long ago was his EMG and what were his symptoms at the time? Who did the EMG's and what muscles were done with each EMG?

I didn't see anything about blood work: has his vit B12 level been checked? Low vit B12 can cause neuropathy AND it causes pernicious anemia . . . and you said your husband is fatigued most of the day.

If you're going to Hopkins, they will figure out what is happening with your husband. A lot of local neuro's dont' have the experience to handle "odd" cases . . . while the neuro's at places like Hopkins are incredibly smart and experienced.

I wish you the best.
 

awieleba

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Just J

sorry to hear about your health problems.
Maybe he has pls? I hear that you have clean emgs and alot of cramps with that. Maybe you should check out the pls section. Just an idea!

I wish you luck at Hopkins and keep us posted. you are in my prayers

april
 

wright

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From your other posts, you stated that your husband has a lot of muscle atrophy. If he has as much atrophy as you say he has . . . and in the time frame that you said he got it . . . then it's not PLS.

Muscle atrophy is a lower motor neuron symptom (i.e. denervation atrophy). You can get atrophy from PLS but it's disuse atrophy, which takes a very long time to become evident, unlike denervation atrophy . . . and even then . . . it won't be very profound.

As we said, your John's Hopkins visit will more than likely shed some light on what the problem is. Hang in there until then. Take care.
 

Just J

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I read a lot of your other posts and it sure sounds like it could be some type of peripheral neuropathy.

How long ago was his EMG and what were his symptoms at the time? Who did the EMG's and what muscles were done with each EMG?

I didn't see anything about blood work: has his vit B12 level been checked? Low vit B12 can cause neuropathy AND it causes pernicious anemia . . . and you said your husband is fatigued most of the day.

If you're going to Hopkins, they will figure out what is happening with your husband. A lot of local neuro's dont' have the experience to handle "odd" cases . . . while the neuro's at places like Hopkins are incredibly smart and experienced.

I wish you the best.
___________________________________

Wright, thank you for your post. The last emg's were 12 - 18 months ago. After the first result the doctor himself was not happy with the results and did the 2nd one himself which indicated no nerve issues. We are also going to ask about the B12 levels. Someone else had mentioned that to us. None of our past Neuro's had mentioned ALS or PLS...I am hopeful that Hopkins will at least have some clue as to what is going on as he continues to decline. It seems that he stabilizes for about 6 weeks at times then starts to major decline within a few weeks.
 

Just J

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Hi there! Boy do we have a lot in common. I was so glad to see I am not alone in having things drag on. I'm a little luckier than your husband in that I still get around but there are a lot of us aroudn here who can relate to being in limbo.

Has he been to an ALS clinic? How do they explain the weakness?

Cindy, thank you for your response. We have not been to an ALS clinic. Always being hopeful that things would start to turn toward the positive. Our last Neuro saw Mike in March and set him up for a follow up visit in Sept with no plan of action in between...so what can be said 6 months later other than witnessing the decline in his mobility. He seems like a toddler to me trying to walk about the house. He places his hand on just about anything that he passes in order to be stablized. Clearly this is not normal.

My emotions have just been all over the place and I finally got real angry. That's when i called Hopkings for the 2nd time. I contacted them last December and honestly they were a bit off putting to me at the time so nothing happened then. But I decided to try again so I will continue to post as we go through this process.
 

Just J

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Just J:

Your husband has a lot of the symptoms of ALS. Like Cindy said in her post, you need to get him to an ALS clinic. I, too have a lot of back pain. One of the physical therapists that worked with me said it was coming from so much sitting and laying down, He said the human body is designed to be upright and walking for a lot of the day and while sitting down it puts extra pressure on the back causing pain. I have a half pillow that I use in my recliner and my power chair. That helps a lot.

I also use Backlofen muscle relaxers for the tightness and spacticity in my muscles. It is one of the oldest and least expensive of the muscle relaxers but works fine.

Good Luck,
Gordon



Gordon, thank you for your post. Have you been diagnosed with ALS? What are your other symptoms? My husband says that in the morning he feels better and walks better but everything settles in within an hour. Because he feels good in the morning he is rejecting the idea of ALS/PLS or even MS (we need to revisit that one too). He thinks that if he had one of these conditions that he would not feel better in the morning. According to me, the person who witnesses everything that he does, his legs only slightly bend int he morning. Some time thereafter they are quite stiff.
 

Just J

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Hi there! Boy do we have a lot in common. I was so glad to see I am not alone in having things drag on. I'm a little luckier than your husband in that I still get around but there are a lot of us aroudn here who can relate to being in limbo.

Has he been to an ALS clinic? How do they explain the weakness?

Cindy, I forgot to ask what are your symptoms? How are you doing? Also, in response to aksing about Mike's weakness....initially they claimed it was due to compression on the C4,5,6 vertabrae in which he had surgery in Jan 2007 to repair. He has gotten considerably worse since then so I do not believe the compression and his mobility are related. If the compression has been corrected then why does his mobility continue to decline?
 

lhagsjr

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Reflexes

Is anyone familiar with the scale they use for rating reflexes? What is a normal rating? 1? What is considered brisk?
 

wright

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Well hey Lou, I haven't seen you post in forever. I hope that means you're doing well. Is there any news?


Rating system is from 0 to 4:

0 = absent . . . even with reinforcment

1 = depressed . . . but present with reinforcement (still considered depressed)

2= normal

3 = increased (some still consider this normal)

4 = hyperreflexia (clonus is probably present too)

Reinforcement means to repeat the "tapping" while the patient clenches the fingers of both hands together and acts as if they are trying to pull their fingers apart. This creates a "diversion" so that the patient's reflexes are truly tested without the patient consciously affecting them (which we can do to an extent).
 

Sammantha

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reflexes

I have to chime in with this whole reflex thing.......... When i was first sent to a University neuro she asked me if i had always had brisk reflexes or if when i was young a did a doctor tell me i had brisk reflexes, i said no........ Then i read in her chart, hyperreflexia throughout, not worried. So i got my medical record from six months ago from my local neuro, who rated my reflexes 1+. I looked that up and it said, decreased with reinforcement but normal. I specifically remember him having to hit it twice to elicit a response. Well NOW my reflexes are so crazy that when i talk and use my hands, as soon as i set them down, if they hit my knees they go flying. On my last neuro visit the doc said my reflexes were very brisk and i had sustained clonus. To make a long story short NONE of this has had any impact on giving me a d--- diagnosis! Sam
 

CindyM

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I agree. I had about 4 months of brisk reflexes, now they are slow or absent. As far as I am concerned, I will believe I have ALS when and if I am in a wheelchair and too weak to brush my teeth. :-D That works for me!
 

crystalkk

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Cindy- Did you ever go back to the specialist, with ALS your reflexes usually stay brisk and don't become slow or absent even no matter how atrophied or weak your limbs become they stay brisk. I know you really don't want to know like you said above....but you could really have something treatable and are missing out on a treatment...... I am not a doctor, It's just my opinion.....

Just J- How are your husbands reflexes?
P.S. I did answer your PM this morning...Please keep in touch.
 
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