Having issues and testing

[ladyannabel]

Hi, My symptoms started about 8 months ago with dysphagia that comes and goes as well as feelings of heat in my legs. I now have weakness in all four limbs bilaterally (worse on right), widespread fasciculations, hyperreflexia and spasticity on clinical exam. There is a "spastic catch" in both legs and I cannot walk on my heels (foot drop?). My tongue deviates to the right and I have a bit of eyelid droop on that side as well. Also negative brain, cervical, and thoracic mri. Is this an example of both upper and lower motor neuron involvement? I am having an EMG and NCS in a couple weeks but I am really hoping and praying my B12 and/or other labs come back abnormal before then to set my mind at ease. I was hoping the MRI would have shown MS or something--anything. Most people want their test results to come back normal. Now I am finding myself wanting them to come back abnormal (except of course for the EMG). I am really scared THAT will be the one to be abnormal. I am sure many of you folks can relate. Doctor did not specifically state that he was concerned about ALS at this point, but I am! What do you all think?

 

[ladyannabel]

Oh, I forgot... I had a normal modified barium swallow! Would this give me hope that it is not ALS? Has anyone with ALS (and dysphagia) had a normal swallow study? Thanks all!

 

[Tokahfang]

Attitude doesn't convey well in text, so I want you to know up front I'm not challenging you, imagine me saying this stuff in a friendly, curious tone. Specifics are important in helping people sort throught the process.

You are throwing a lot of jargon out there, and I am wondering where some if it comes from. Did you doctor use the words spastic catch, or did you see it on his exam and get the term by looking it up? When you say weakness, do you mean you feel weak, the doc said you were weak, or you actually know what numbers your strength tested out as? Which reflexes are hyper?

I am specifically wondering about the dysphagia you mentioned. What is it about eating that isn't working for you?

I didn't hear anything in your post that demands LMN involvement, but your EMG will tell you one way or the other. To put it in perspective, though, injuring your spine in a ski accident is also a combination of UMN and LMN involvement.

It sounds like you have a doc who is working through things with you, which is great! That is the most valuable thing for someone in your position. Don't jump to conclusions they don't, heh.

 

[ladyannabel]

It is all in my medical records. I used to be a transcriptionist and since then I always read my records. Plus he told me that my reflexes were very brisk and he was very concerned about that. (These were records from before the MRI results, so his "guess" at that time was MS or brain tumor. But now that the MRIs were clear but my clinical symptoms aren't cleaning up and he has suggested EMG I am worried that he is now going down the path of ALS. I'm afraid to ask though.

 

[Tokahfang]

Medical records are excellent. Feel free to visitor message an email address to me if you'd rather talk off-forum, but the specifics would be really helpful. How brisk your reflexes are, for instance, is much less valuable knowledge than which reflexes are brisk. That goes for strength numbers and such, too. And please do elaborate on the dysphagia. I can't think of an MND related dysphagia that wouldn't show up on a modified barium swallow, but have you had any esophageal testing done (like a manometry)?

 

[Ms. Pie]

Ask your Neurologist.

 

[ladyannabel]

I think I'll call and talk to his nurse about my worries closer to the date of the test. I'll ask what his specific suspicions are and whether I can take pain meds before EMG.

 

[Ms. Pie]

He may have no idea what it is until he gives you the EMG. Patients is called for here. Ask him after your EMG what he thinks. You're in essence asking for a diagnosis before you get the test.

 

[ottawa girl]

... and whether I can take pain meds before EMG.

The test isn't that bad (but pain thresholds do vary). In thinking back to my EMG, and no doubt you were previously advised, the use of any skin lotion can render the test more painful. In preparation, I recall having had a "soap-less" shower- just in case.

 

[Luke]

Try not to torment yourself with what-if's and fears of worst-case scenarios. There is still a broad universe of things that could explain your symptoms and you shouldn't try to steer your doc's toward ALS. Let him continue down the path he sees fit

 

[ladyannabel]

He may have no idea what it is until he gives you the EMG. Patients is called for here. Ask him after your EMG what he thinks. You're in essence asking for a diagnosis before you get the test.

Well, I am thinking he must have some idea of why he ordered the EMG. Docs don't just order unnecessary tests, so he must be thinking something. Wouldn't he? He first thought MS or spinal cord lesions because my symptoms were highly suggestive of CNS pathology and things that would have shown on MRI. But since they did not... it seems that he is now thinking something else, but he is not telling me what. I suppose I should ask.

 

[notme]

There are several things...

First, ALS doesn't cause a 'heat' feeling in the legs. Nor does it cause droopy eye lids. Also in ALS, the trouble swallowing doesn't come and go--it comes and worsens--but usually there is difficulty with speech first, as the tongue doesn't work properly to form words....so, in essence, I'm thinking you're putting the cart way before the horse.

He's not necessarily doing an EMG because he suspects ALS--he's doing it to find out what, if anything, your muscles and nerves are doing. It would have been irresponsible of him to even speculate re ALS until after he'd done testing. Sounds like your doc is right on the ball!

There are other tests he will need to do most likely--one of which may be a spinal tap---MS does NOT always show lesions on the brain or cord. SOMETIMES it shows in the spinal fluid only, even while symptomatic.

ALS also doesn't attack the entire body with symptoms in all 4 limbs and bulbar region at the same time. That would be very, very unusual--but there are things that are body-wide.

Has MG been ruled out already?

 

[ladyannabel]

Very true, notme. Thank you so very much! I was fishing for confirmation of these things, particularly the intermittence of swallowing. I just wanted to be sure that no PALS jumped up and said "I do" to any of these things. I have thought about the percentage of MSers whose mri studies do in fact come out negative. The neuro said that it looks like I don't have MS but if he finds nothing else, I will ask him about that possibility. Thank you so very much for confirming that ALS does not cause eyelid drooping or intermittent swallowing issues and hot feelings, etc. MG has not been ruled out and I have thought about it, but MG does not cause hyperactive reflexes to my knowledge. We shall see after the EMG I guess, and thanks again for being a big help.

 

[ladyannabel]

I have a diagnosis! It's vitamin B12 deficiency! I just got a call this morning about my labs showing low B12. Still working out the details, but I am so happy I don't have to worry about ALS any more!

 

[ottawa girl]

Great news!

Happy New Year and all the best to you.
Please do what you can to raise awareness about ALS and the people impacted by it.

Wishing you the best life ever!