EMG this week - any guidance appreciated

[tmg16]

I am going with my Mom to her EMG appt this week. She is mid-50's and MND/ALS has been mentioned as likely given clinical findings and lack of other findings on MRI and bloodwork. I have read quite a few posts on this board as well as what I could find by googling. What can I expect? My understanding is that the neurologist will conduct the test and review the results at the appointment and I am just so afraid that I will not be able to be what I need to be for my mom. Any advice is welcome. Her symptoms were hand weakness beginning almost a year ago and has progresses to difficulty swallowing, slurring and I suspect some breathing issues. We are close but she is very reserved/stoic and has not shared much. I don't want to make any of this harder for her.

 

[lgelb]

T,
Depending on the setup, you may or may not have a diagnosis when you leave. But just by being there, you're letting your mom know that you're there to learn/support and that's a good thing. Having you around couldn't possibly make it harder unless you were unrealistic, e.g. touting pseudoscience, miracles, or in denial. Doesn't sound like you would err in either direction. Make sure you bring or the neuro has her previous records/tests (including film).

If the neuro is revealing, it can be hard for your mom to process. Try to enter notes from the appointment as you go, ask any questions that you think your mom would want to know, make sure there is a followup plan (what happens next and where). Don't worry about being some perfect companion; this is one of the times that showing up and following the Golden Rule works as well as anything. Thank you for going with her, and we all hope that the EMG points in another direction.

Best,
Laurie

 

[tmg16]

Laurie,
Thank you so much for taking the time to reply. I have been astounded by the support on this board and site. I am not into pseudoscience and only wish I believed in miracles. I am more concerned about that article I've seen about the circles of comfort and not being on the right side of the circle for her. On the one hand I am a pretty practical person and am thinking about all that this means and on the other I get pretty weepy when I go down that road. I was supposed to get to keep her for another 20 years dammit.

 

[Atsugi]

TMG, you seem to be afraid you'll do or say something wrong, or afraid that you'll not be supportive enough. Above all, you're afraid of losing your mom. Don't blame you. We've all been there, for sure.

Mom is 50+, independent, and she has been handling life slings and arrows since way before you were born. Respect that. You don't need to say or do anything to show your love. Just be there.

Just be there, tmg. It means a lot.

 

[scaredwifetx]

TMG, you already have a great start with supporting your mother. I can also tell you that you will learn and will be able to be there for your mother. Once the EMG results are back and if she is diagnosed with ALS, you will need to be as mentally strong as possible. It is very hard hearing your diagnosis and it is equally as hard for the family. Give your mother and yourself time to grieve and or be in shock.
I can say from experience that I did not give myself that time and thought I had to get everything planned for his needs right away. You so want to stay ahead of the game but you not want to take on to much all at once. This will not do you or your mother any good. You can also contact the ALS Association in your area. They will be remarkably helpful and will counsel you and your mother regarding the steps that need to be taken.

You are her son and what she will need most is for you to be by her side and knowing you are ok. My husbands biggest fear has not been the disease. It has always been what is doing to me. You will be in our thoughts and know that you do have help and support here.

 

[Green Queen]

Seeing my kids and husband cry at appointment times was good for me.

Whether it was good news or bad news, knowing I wasn't going to face things alone, that they were there for the long haul...good feeling amongst all the turmoil.

All the best for the EMG.

 

[AP1981]

Good luck for your mum.

Just being there is great support. Also really useful is having a pen and paper to write things down.

 

[tmg16]

Thank you so much for your kind words - they mean a lot. I'm trying to mentally prepare myself. I'll be sure to bring pen and paper. If we get a diagnosis should I ask about a prescription for rilutek right away. If my Mom doesn't bring it up? Anything else? I've been reading on these boards for a week now and it looks like if she has nmd she could already benefit from some of the assistive devices because I think her breathing is already affected. She has a kind of a weak cough from a cold she had 6-8 weeks ago that keeps cropping up. She is independent but she is still working on coping with my Dad's death (a couple of years ago) and is not a very good advocate for herself. She let her pcp keep sending her for pt and to orthopedic specialists when she began having problems with her hand and even swallowing.

 

[Nikki J]

If this is the treating neurologist I would think they would offer riluzole on diagnosis. There is believed to be better effect given early. It is not a cure or even a really effective treatment but for those of us who are fortunate it seems to slow things down a bit.

Has she had pfts ( breathing tests)? If not given her issues ask for them to be ordered

Good luck

 

[tmg16]

She has not had any breathing tests. This has been really fast considering some of what I have read about others' road to diagnosis - but then I think that is because the symptoms don't point away from mnd at all. She has had a brain MRI and cervical MRI, lots of bloodwork and clinical exams. Thanks for the info - I'll mention the pft (pulmonary function test?) if no one else does. Her initial appointment with a family medicine doc was 3 weeks ago and her first neurology appointment was a week ago. Should I ask for a referral to Mayo?

 

[Nikki J]

Yes on meaning of pfts!
If you are solid with the diagnosis I would want to go to an ALS clinic. A good clinic can help with equipment issues and you can see all the services in one day which can be important when it is harder to get out.
There is a clinic at Mayo. There is also one at Hennepin County(ALSA approved). If, as I would guess from your profile the latter is significantly more convenient I would give it a try. Travel gets harder. If you go to a clinic and hate it you can switch. You can try both and pick.
If you feel unsure of the diagnosis though I would probably travel for a second opinion

You are local to these places so you may have knowledge of these places that I do Not

 

[tmg16]

Thanks Nikki, I really appreciate it. HCMC would likely be more convenient as would the U (which I think also has a clinic). I know some swear by Mayo (not for this specifically but just in general).

 

[Atsugi]

Mayo has two really big things going for it as far as ALS patients are concerned:
1. First, they put big bucks into hiring the best.
2. Second, the ACTUALLY have patient-centered medicine, where the patient is in one room and if you have a concern they go get a doctor to come to YOU.

 

[tmg16]

Thanks Mike. I appreciate it.

 

[tmg16]

No diagnosis still. The doc wanted time to review the EMG results and ordered a thoracic MRI and more blood work. He did say all the muscles he tested were abnormal (left foot, calf, upper leg and hip; same on right; right shoulder, arm, wrist & hand; and mid to upper back). All the motor nerves were abnormal. All sensory nerves were normal. There is quite a bit of wasting in her right hand where she first noticed weakness (back last April). Nothing on any blood work except vitamin D deficient. Cervical MRI showed compression and stenosis but he didn't feel like it was enough to explain the symptoms. He seemed a bit thrown by the back muscles being affected. More tests and then another appointment to review. Is there really a chance this isn't ALS or is the doc just doing his due diligence to rule out anything and everything else?