Good News/Bad news

[liz]

Hi Leslie -

Unlike a lot of you, I've been very fortunate with the doctors that I've seen through all of this. They've been respectful, truthful, hopeful, and compassionate. I think this has made a big difference as to how I've handled my whole situation.

From your last post, it sounds like you don't have a lot of confidence in the doctor that you saw. If you're going to make a switch, switching early seems to make the most sense to me. I just wish you didn't have to travel so far for care.

I wish you the best of luck, no matter what you decide to do.

Liz

 

[Jamiet]

Leslie,

Find you a neuro that is at a sponsored MDA ALS facility. Go to the MDA's website and you can look for a facility. There should be one w/in a few hours of you. I drive 4 hours to visit my neuro in HOuston.

Went there today, and regarding reflexes....I did kick her..literally....it hurt her....Of course, she stated you are VERY brisk....

And again, she had no answers for me. She is still saying no als, but, her confidence seemed shaken this time.... Told me to come back in June...that's 5 months...

She was straight forward with me and told me, you'll either be better or worse... If your worse, it's bad, if your not, it's good....

Normal Reflexes are a good thing.

Best of Luck Leslie...

 

[patricia1]

Its important not only who reads your emg but who does it as well so yes I would make sure before I let him do it or read it because it is not a pleasant test

 

[ltr]

I'm sorry your reflexes were brisk Jamie. I know that can give you a pit in your stomach. Hopefully things will get better and when you are ready to go back your reflexes will have calmed down. I am sure 5 months seems very long to you, it does to me, but try to put your mind on moving on, think positive. My reflexes changed, maybe yours will too. Leslie

 

[niceguy]

Hi Jamiet,
I agree with Leslie on the reflexes and trying to relax over the next 5 months. My reflexes / jumpiness were much higher before certain tests like my EMG came back clean. Which I'd attribute to my anxiety and hightened attention to the reflex test. I know that somethings wrong with me but at least there was some positive news. Did you have other normal pathalogical signs? How about the Babinski(?) test?

Since then, I've basically been more accepting of the fact that something has changed and it's affecting my life. At this point in time I don't know if it will continue to progress or if this is as bad as things will be.

The way I keep looking at things is; I've been fortunate in a lot of ways, and I'll continue to do the best that I can. I've actually loosened up a bit more around people and I've gone out and purchased a few things I probably wouldn't have if my symptoms had never occured. At this point in time I'm enjoying things more than I did before, so that's a big plus.

 

[hopingforthebest]

Leslie

That's a good question? Not sure about that. Ask the experts here.

Praying for you!

Patty

 

[MagnusD]

Why are weakend reflexes a symptom of ALS?

 

[ltr]

I don't think they are. From what I have read they are brisk or hyperreflexic in als.

 

[liz]

Leslie -

You are right. It is brisk reflexes that are a sign of ALS, at least early on.

Liz

 

[MagnusD]

Upper motor neuron
Spasticity
Hyperreflexia
Pathologic reflexes (eg, Babinski's sign)


Lower motor neuron
Muscle weakness
Muscle atrophy
Fasciculations
Hyporeflexia This is Weakend or absent reflexes....
Hypotonicity, flaccidity
Muscle cramps


Bulbar
Dysarthria
Dysphagia
Sialorrhea
Pseudobulbar palsy


Respiratory
Exertional dyspnea
Respiratory failure


Other
Fatigue
Insomnia
Weight loss
Tendon shortening
Joint contracture
ALS, amyotrophic lateral sclerosis.




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Adapted, with permission, from Mitsumoto (1).


Is this a late sign or what?
Ive been scheduled for an EMG and NCV in May for having the spasms/cramps/fatigue and weak reflexes
My strength was not that bad. However I am showing some signs of atrophy; when I look at myself now and compare to 7 months ago. My body pops/crackles when I move, and if I walk for awhile the next day it feels as though I ran on a treadmill for an hour type soreness
I also am always tense and flexing muscles unvoluntary, but I notice them at times and can relax them back to normal not sure if this is Spasticity...
Im just worried and scared

 

[ltr]

We have some of the same symptoms. I, too, feel as if I ran a marathon the next day after walking. Simple things make my muscles feel as if I worked out strenuously. For instance, today the physical therapist checked my muscle strength, which he said was good. Now I am having much more twitching, cramping and feel as if I worked out. And all I did was push back against his arm! I also have noticed that my "bones" crack when moving. I am not sure it is bones, like you said pop and cracking. Also, like I said earlier my reflexes have gone from one thing to the other and the docs were never upset about them. I would rather think it doesn't mean anything than to think I have only seem dumb docs! I'm trying to convince myself of the former!

It is very good news that your strength is good. Did the doc say you had atrophy or did you notice it yourself? Because I noticed my muscles wasting, but the physical therapist said he didn't see "too much wasting". That's way more than any doc has told me.

I know May seems a century away, but maybe things will get better by then. We have some similar symptoms and there are people on this forum who are sure I don't have an MND and the neuro didn't seem alarmed. I hope you the best. Leslie

 

[MagnusD]

My muscles are real defined now, ex. splits in my calves where I never had them 6 months ago. My muscles are smaller than they used to be. The worm like spasms and cramps just make my day go bad from waking till I go to bed.

 

[niceguy]

Adapted, with permission, from Mitsumoto (1).

Is this a late sign or what?
Ive been scheduled for an EMG and NCV in May for having the spasms/cramps/fatigue and weak reflexes
My strength was not that bad. However I am showing some signs of atrophy; when I look at myself now and compare to 7 months ago. My body pops/crackles when I move, and if I walk for awhile the next day it feels as though I ran on a treadmill for an hour type soreness
I also am always tense and flexing muscles unvoluntary, but I notice them at times and can relax them back to normal not sure if this is Spasticity...
Im just worried and scared

I have similiar muscle and joint issues. I noticed an increase in joint problems with my wrists, fingers, neck, knees, and my ankles (minor but they've all started to occur within the last 6 months). If I get up out of my chair and push down with my left arm I get a loud crack...

My muscles... they quiver at times when under light loads (but I have good strength). I find them tensed exactly as you've described and I can relax them immediately upon notice. This is very different compared to the "spastic" feelings in my hamstrings. It's hard to explain but there's a clear difference because the tight muscles aren't cramped and I can relax them. When the spasticity occurs in the legs, I'm stuck with it until they relax on their own (it's a more uncomfortable feeling in the legs and the muscles aren't very tightly contracted).

Fortunately / unfortunately for me, I've experienced other symptoms that point to metabolic disorders. The'yre incurable as well and they tend to progress more slowly (than a MND) but they also affect more areas of the body. The muscles first affected (notably) are my shoulders and hips. Now my neck and back fatigue faster as well and I've also had tendon pain (achillies). About 2 - 3 years ago I started to work out (after stoping in highschool). Everything seemed fine throughout the day after the workout but when I woke up... The tendons between my biceps and forearm hurt more than any muscle injury I'd had in the past. So, I'm not sure if something's been wrong for the last few years but it wasn't noticeable enough to see a doctor.

One symptom that I have which is clear to me throughout the day is taking a drink. If the water bottle is about 1 - 2 feet away my arm feels akward reaching out for it. Once I get it, the last few inches before I can drink become akward and shaky. Sometimes my head will even make a funny move while I'm focusing on getting the drink in my mouth and not on my face. A lot of the time it feels like my hand wants to move quickly and throw the drink in my face...

 

[ltr]

Hi Jamie,

I wanted to thank you for suggesting the vitamin regimen with the dosages. It has been about 3 weeks since I started it and my twitching has lessened. In fact, as compared to when I wrote that post I feel a lot better. I still have neurological symptoms and am not the person I was 16 months ago, but I definitely feel better than I did. It makes me wonder if I was deficient in one of them. Anyway, I am so thankful for that info because of how much it has helped me. Leslie