ALS clinics in DC/Baltimore area -- useful for PLS?

[callieB]

Hi, my husband with PLS-bulbar onset for about 4 years now has symptoms that are worsening. I'm trying to convince him to attend an ALS clinic although he's not sure it would be useful. He has a neurologist (who diagnosed him early on) whom he really likes, but I feel more consultation with other specialist would help us at this juncture and like to convenience of the clinic set up.

Is anyone in the DC/Baltimore area? We are looking at GWU, UMMC, or Johns Hopkins I think. WOuld appreciate any feedback or advice. Thanks!

 

[billbell52]

I also have Bulbar PLS. It is VERY rare. At 4 years I started having problems walking. At 6-7 years I was confined to a power wheelchair (PWC). PLS progression can vary widely, however, I have seen Bulbar PLS progress in a similar way. I go to the MDA/ALS clinic in Dallas. I like the clinic because I like the doctor and he is familiar with the disease. He goes out of his way to make sure I have everything. MDA is very good at covering a lot of costs. Having said that there is no treatment for the disease. The doctor can prescribe meds for symptoms.

Bulbar ALS progresses quickly. If he is 4 years into the disease he doesn't have ALS. I am not sure of your goals. I doubt a specialist will come up with anything different. If it really bothers you go ahead and make the appointment. You both may really like the clinic.

 

[callieB]

Thanks BillBell. I have seen your summary or symptom progression for bulbar onset PLS and it seems my husband is in a similar progression.

I'm not sure my goals either. Just looking for more support I guess, as things are starting to get a lot harder for him. Also maybe to find people who are familiar with this disease. He has a neurologist but I don't think the doctor has seen a lot of PLS. I'm hoping someone can give us a sense of what to expect so we can make plans. Our current housing situation isn't great for what's to come. I'm someone who learns a lot just by reading online, but my husband reacts better to an individual/professional's advice.

 

[Nikki J]

My sister lived in MD and had ALS. The doctors at Hopkins are brilliant and she liked her doctor there. She was less enthusiastic about the clinic but they do have all the services. I heard from someone else they liked UMMC

You might also consider the NIH study on PLS. This would not replace care in the community but he would see Dr Floeter who is actually a PLS specialist ( something you won't find in the non academic world) she is both brilliant and kind

 

[Duker52]

I live in Alexandria, VA and am now seeing a neurologist at Johns Hopkins. I will see their ALS clinic in September, which is the earliest they could fit me in. I started out at GWU and Georgetown, but lost confidence in both. JH is the best, IMHO. I have familial ALS.

 

[callieB]

My sister lived in MD and had ALS. The doctors at Hopkins are brilliant and she liked her doctor there. She was less enthusiastic about the clinic but they do have all the services. I heard from someone else they liked UMMC

You might also consider the NIH study on PLS. This would not replace care in the community but he would see Dr Floeter who is actually a PLS specialist ( something you won't find in the non academic world) she is both brilliant and kind

Thanks, unfortunately he is not a candidate for Dr Floeter's study due to another condition he has.

 

[callieB]

I live in Alexandria, VA and am now seeing a neurologist at Johns Hopkins. I will see their ALS clinic in September, which is the earliest they could fit me in. I started out at GWU and Georgetown, but lost confidence in both. JH is the best, IMHO. I have familial ALS.

May I ask why you lost confidence in GWU clinic? I didn't know Georgetown U had an ALS clinic.

 

[billbell52]

PLS is a VERY rare disease. About 50 people get it a year in the US. Bulbar PLS is a rare form of PLS. Around 10 people get it a year. I doubt his doctor has seen another case. Even at the ALS clinic I go to they less than 10 and that includes North Texas, Southern Oklahoma and Western Arkansas. The clinics are more equipped to give advice about living with the disease. In my experience doctors are very reluctant to give a progression timeline. One thing I wish I had done was better prepare for my disability requirements. I would have sold my house and moved into a condo. I getting ready to do that now.