First ALS Clinic visit

[GRM2008]

My mom was diagnosed with multifocal motor neuropathy, but was referred to a neurologist in NYC who diagnosed ALS and referred her to the ALS Clinic at Columbia Presbyterian. We have our first appt with her late July. My question is, will she be evaluated again at the clinic or is it just assumed that since she's been referred there, her diagnosis is a given? Can anyone tell us what to expect at this first visit to the clinic?

[fiddleplayer51]

Hello GRM,
So sorry about your mom.
My husband was diagnosed in late March with ALS by a neurologist here in our town who performed both EMG and NCV study. The neurologist insisted that we obtain a second opinion so we asked to be referred to the ALS clinic in Charlottesville VA. However, the procedure at the Charlottesville ALS clinic is to have a neurologist from the UVA neurology dept. confirm the diagnosis by repeating the EMG.
My guess is that the EMG for your mother will be repeated. I think most diagnosticians prefer to perform their own tests and the ALS clinic needs to be certain that they are dealing with a confirmed ALS patient.
I hope everything goes well for your mom. Let us know how things go.
All good wishes to you both,
Jane

[sharonca]

As for your first clinic appt - your mom will probably see all the regulars - Respiratory Therapist, Occupational Therapist, Physical Therapist, and the Neuro. They will analyze her situation and make any recommendations for equipment or whatever. You will need to accompany her and keep track of what is what for her. It is overwhelming to get all that information. The appointments usually last several hours and will most certainly be tiring.

Good luck

Sharonca

[GRM2008]

I really appreciate the responses. This is an overwhelming and terrifying thing for any person, any family, to have to endure. It's new to us, so we are still in that stage of perpetual fear and have millions of questions. We want to get to the point of acceptance so that we, as her children, can take the bull by the horns and do what needs to be done. The upsetting thing also is that SHE is the caretaker of her partner of over 10 years, who has very complex needs on a daily basis. My mom is the one who lugs all the heavy stuff, the trash, the newspapers, the groceries, because she's the only one of the two of them who can. Two of us live relatively near her but I live on Long Island, not exactly close to northern NJ where mom is. We are just all feeling very scared, as I know everyone else on this site has felt or is feeling too. Nice to know we're not alone. Thank you.

[KevinMDA]

Please contact your local MDA office and have your mom register with them. She can go to MDA Clinic 4 times a year, at no cost to you, ever. Whatever her insurance doesn't cover, MDA will pick up.

They are likely to have an ALS Support Group for her & your family, as well.

The national website is www.mdausa.org.

Good luck, and God bless.

Kevin

[lovelily]

Hello GRM....I just wanted to wish you the best with your mom's visit. I am sorry that she is having problems. I haven't told my children that I have been referred to a neuromuscular disease hospital. I don't have it in me.

take care
lovelily

[karin]

Hi,

if there's even the slightest possibility that it's MMN, you may want to ask about IVIG treatment.
It helps for MMN, does nothing for ALS.

[GRM2008]

I am so appreciative of all the information that everyone on this site provides. Karin, my greatest prayer is that the ALS specialist actually tells us it MIGHT still be MMN and we can try the IVIG treatments. Lily, I am not sure how old your kids are, or what your relationship with them is, but I can tell you that it pained my mom tremendously to tell us she was diagnosed with ALS, she kept saying she was so sorry, as if it was her fault! My two sisters and I are all in our 40s, and our kids are old enough to have it explained to them in an age-appropriate way, just that Grandma has a disease and she's going to need a lot of help and that spending time with the family is very important to her. The result of this, for my mom, has been that she is drawing strength from her family and friends that is beyond what she imagined. She doesn't feel alone. I wish this very same thing for you. It's out there, don't be afraid to seek it. Kevin, thanks for the referral to the MDA clinic, I will look into it.

[fiddleplayer51]

Kevin,
Thank you so much for reminding people from time to time about MDA and its services. I think it's especially helpful when new members come on and feel so overwhelmed not knowing where to turn or what to do first. MDA is so amazing!
All the best to you. Thanks for joining the forum.
Jane