I'm back after waiting off and it doesn't look good, help

[Dusty7]

In April I said, "I would ask for a copy of the NCS and EMG reports—not just the doctor’s summary, but the whole report."

Did you get the reports? Which muscles showed insertional activity, spontaneous fibrillations, fasciculations? Which showed abnormal MUPS? On the NCS which muscles showed slowed velocity or reduced CMAP?

"decreased nerve signal to my muscles" is not a term I have seen in an EMG. Did she mean you had a decreased CMAP? In which muscles? Axonal loss could be due to a number of other diseases. Or did she mean decresaed velocity? Demyelination could be due to a number of diseases, many of which are treatable.

 

[Kosmoskatten]

As Dusty says, a "decreased nerve signal to muscles" sounds like the NCS. And it is indeed important to know if this means decreased velocity, because that can be present in nerve compression for instance, and it is treatable.

I find it very strange that a physician would say; "I suspect you have ALS". ALS is a diagnoses of exclusion, and doctors seldom jump the guns if they are not sure. You doctor is not sure, since you are referred further.

Are you sure it is not you who suspects you have ALS, and in the blur of the doctors appointment and the fact that they could not give you answers, you have added this to your doctors words?

I am not trying to be rude, but you are on Xanax and there is something going on with your body which have sent you to to an extreme level of health anxiety. I understand your fears, but looking back at your numerous posts it seems you have had many different symptoms, and it is unclear if some of them has gone in remission.

I think you should go to the ALS Clinic and get a proper evaluation. As many have said in this thread, if it is ALS, it seems to move incredibly slow.

The bottom line is that this forum can't help you more than it has at this moment. You need to see the referred neurologist, get the full evaluation, and if it should prove to be ALS, know that there is a great deal of support to be had on this forum, and that you are not alone.

 

[Antologia]

I'm so sorry you didn't have a clean EMG, Zaranataly. I can understand your fears, but try to take one day at a time and see what they say in Houston. Suspect ALS or MS is not the same as a diagnose yet.

I have a question: I know that MS and ALS can sometimes mimic. But, I alway thought, that with MS you don't have a dirty EMG the same way as you have with ALS. Is that correct? I always thought that MS could be diagnosed with a MRI and a spinal tab. Or am I wrong?

 

[Antologia]

Oh, and about the twitching in your esophagus... I never had that, but I think it could be possible. I have twitching in my uturus and vagina now and then. And in my ears as well, I do not only feel it, but I also hear it, it's noisy. So why not in your esophagus?

 

[Zaranataly]

I was also shocked when the doctor mentioned ALS. I did not expect for her to mention it that fast or after only an EMG and some blood work. Basically, where I live the number of neurologist (specialists) in very limited and I was lucky to find her because she is able to read the EMG herself and not go based on what the EMG doctor reports (That's what the EMG doctor said to me).

I'm sorry I was typing really fast and very confused yesterday. Doctor said that I have DECREASED VELOCITY. She is being very straightfoward I don't know why. She is not trying to sugar coat anything that is why I was in a state of panic yesterday. She immediately said:

"I suspect you have ALS based on the results and your symptoms but I can't give you a definite diagnosis because the EMG results weren't as bad as I thought they would be"

that is exactly what she said and my husband was present so It wasn't my imagination.

She also said that I will be sent to the ALS clinic regardless of the MRI & bloodwork results. That is the reason why I was so upset and shocked yesterday.

In her little note for the MRI she said "suspect; ALS or MS"

Also, I'm sorry that a lot of people come to this forum with anxiety or to mock ALS patients but I am not doing that. Honestly, very few people know about this whole procress of getting diagnosed etc and I come to this forum for support. I don't know where else I can talk about this testing process...

My family & friends have no clue that ALS is. They keep telling me that I can do physical therapy and take pills blah blah. I have been trying to explain to them what it really is so that we can be prepared IF that is what I have. I have no idea why this "whatever" I have has progressed in this strange way. The doctor clearly said to me that EVERY PATIENT IS DIFFERENT AND THEIR SYMPTOMS WILL VARY

For now, I will be getting an MRI of the head & spine along with some bloodwork and then the wait begins...

 

[Zaranataly]

In April I said, "I would ask for a copy of the NCS and EMG reports—not just the doctor’s summary, but the whole report."

Did you get the reports? Which muscles showed insertional activity, spontaneous fibrillations, fasciculations? Which showed abnormal MUPS? On the NCS which muscles showed slowed velocity or reduced CMAP?

"decreased nerve signal to my muscles" is not a term I have seen in an EMG. Did she mean you had a decreased CMAP? In which muscles? Axonal loss could be due to a number of other diseases. Or did she mean decresaed velocity? Demyelination could be due to a number of diseases, many of which are treatable.

I will be picking up the reports this afternoon.

 

[Kosmoskatten]

There are still a large number of diseases and issues that can cause decreased velocities in an NCS. Saying the "EMG results are not as bad as I thought they would be" does not sound straightforward at all. It is a good thing that you are picking up your reports.

ALS and MS are two very different things. And they have different clinical and laboratory features. Diagnosing MS without a spinal tap hardly occurs. Did they find white matter in your MRI? This can support an MS diagnoses. Bloodwork is used to rule out other diseases, neither MS or ALS are diagnosed through bloodwork.

I agree that all ALS cases are different, but they still require specific diagnostic features, which with what you have said so far, are not present. And that is a good thing!

Very well, you can bring your EMG report and journal to your ALS-clinic visit and hopefully they can go through this with you so you feel more informed.

Best of luck!

 

[Suzannah]

Hi,

I just wanted to give you a head's up that it might take longer than July to do your clinic visit. I was referred to the same clinic at the beginning of May, after all my tests were done. It took them about three weeks after that to just review the paperwork and decide that I could schedule an appointment. I scheduled towards the end of May, and the first thing they had available was the last week in July.

Sincerely,
Suzannah

 

[chuckstr]

Yeah, echoing what Kosmokatten said, nothing of what you've told us your neurologist said about the EMG is indicative of ALS. I'm not an expert by any means but as far as I know EMG evidence of ALS would consist of acute (positive sharp waves, fibrillations, fasciculations), and chronic (polyphasic, large MUPS) denervation. And even then, as Dusty pointed out, denervation can be caused by many things.

Decreased NCV is indicative of demyelination which isn't normally associated with ALS until after significant atrophy and not in isolation from denervation.

And all this is in the context of which muscles are showing the issues. That is why the EMG report with that detail is so important.

The ALS center should be able to get your problems figured out once and for all.

Good luck.

 

[affected]

All sounds pretty vague still to me.

The process will still take some time, so you need to relax and enjoy that baby.

We are offering you support here, it's just that we will give the kind of support we feel is of benefit to you, and pandering to panic doesn't rate as a beneficial support to me.

When my Chris was being diagnosed we were sent from one specialist to another (none of them neurologists as no one suspected his bulbar symptoms were neurological), we would have to wait a couple of months between appointments. We would think that this new doc was going to work out what was wrong and we would be on the upward path. The appointment would come and go and we were no wiser. We did not sit and cry, we kept on living. Even when Chris had to sell his cafe and stop working, we still had no diagnosis. He suspected strongly then it was ALS, I was in complete denial. Still he didn't fall apart crying why me.

So the support I would offer you is to keep your head on straight, get your priorities and stay off the internet as much as you can.

Sure, come back and post the results of your next tests, but apart from that, think about how much life you can pack in to the waiting time.

 

[dfield00601]

I have bulbar als and this and other sites say it may start with burbar but it will spread ,I have been getting bad cramps in my legs that force me out of bed and cramps in my neck but now I workout at gym every other day I workout hard for about 1and1/2 hours it stops the cramps and I am getting stronger each time I am 55 and drink creatine before working out and on rest days if I take 2 days off the cramps return. the exersize tab here says exersize can keep nerves stuck in place and so far it seems to work. God bless

 

[dfield00601]

the neurologist gave me med that would work to make me talk better if it was the other sickness. it did not help what made them sure was an electro pin test where pins were stuck at many nerve places and it could tell there was too much resistance on my tonghn that was final test that confirmed als.

 

[MaxEidswick]

>I workout hard for about 1and1/2 hours it stops the cramps and I am getting stronger each time I am 55 and drink creatine before working out and on rest days if I take 2 days off the cramps return

very sorry for your diagnosis!

The consensus of everything I've read suggests that working out is a very bad idea. Light and aerobic workouts are preferred as muscle may not redevelop.

For what it's worth,

Max

 

[Zaranataly]

I'm really trying to be positive BUT I have a bad EMG, cramps, fasiculations, weak leg (muscle wasting), and touble with speech/swallowing. The chances of it not being ALS or a serious Neuromotor disease are pretty low.

I already set up an appointment with a counselor through my work (it's free basically).

I'm having a hard time right now. I work as a Child Protective Investigator and it's a pretty stressful job + this imminent diagnosis. I spoke to my supervisors etc. and they are well aware due to my many upcoming appointments. At this moment I am allowed to take as many days off as I need.

Well, at this time I am not panicking. I am mentally preparing myself for whatever is next.

Thank you for the replies and advice. I will continue to post here about my upcoming tests and appointments .

 

[Nikki J]

Did you pick up your report for emg as you planned? Would you care to share?