1st ALS clinic appointment

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sharona

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Hi Well we finally decided to make an ALS clinic appt.Larry has been going to local neuro for 4yrs & all he says is he has both upper & lower motor neuron disease,So we have finally decide to go to ALS clinic maybe they will have a better idea what is going on.Praying it's not ALS but if it is atleast we can begin to deal with knowing what is happening to his body.Larry will be seeing Dr.Julie Rowin at University of Illinois in Chicago on Oct 29th .Please add Larry to your prayers. thank you.& God Bless all.
Sharon
 
hi sharon.
i will definatly keep you in my thoughts and prayers.:smile:
hope the appointment goes well,please keep us updated.
i hope you are ok,i know you also suffer ill health.
 
Hi Sharon, I will be thinking about you... L
 
Hi Caroline,
I think of you often .Hope you are doing better I read all your posts.I think of Del everytime I come on this site which is many times a day.I miss him he was my BUDDY.Thanks all I will keep you informed of what we find out,may not be what we want to hear but we will deal with what ever comes.God Bless all.
Sharon
 
My thoughts & prayers are definately with you. Keep us posted.
 
I'm surprised the local neuro didn't refer you to an ALS clinic when he first started saying it was an upper and lower motor neuron disease. There aren't too many of those that I know of outside ALS.

I'm hoping the local guy is wrong!

Best of luck!

Zaphoon
 
Sharona,you will definetly get more answers from tthe ALS clinic and they have a multi dicipline team that can give you great support. You will both be in my thoughts and prayers .
 
Hi Zaphoon
When Larry first went to this neuro group,the first doc said on the first visit he thought ALS,but then retracted this diagnosed after doing all kinds of tests saying clinicals point to ALS,but tests emg etc do not.so then he turned Larry over to his partner after more tests etc.he says MND upper & lower.I asked about going to an ALS clinic & he said you can go but you may hear what you don't want to hear.& you probably will come back here and we are both very good neuro docs.WE NEED TO KNOW SOMETHING YES OR NO ALS.it drives you crazy not knowing what is happening to your body yes his progression has been slow ,but his dad got very sick & died within about 6mos, that took a toll on Larry he was very close to his dad .he passed away on May 10 09 & he still is dealing with depression. & I noticed more changes since then ,so please keep him in your prayers.thank you so very much.God Bless.
Sharon
 
Sharon,

After reading your last post, I am very glad to know that you have an appointment with an ALS clinic. You will get a definite yes or no regarding ALS, at the very least. If it turns out your husband does have ALS, the clinic has the tools to educate and equip you regarding changes as they occur. If it turns out not to be ALS, well, you've heard it from the experts.

I think it was a bit brazen for your neuro to tell you there is no need to go to the clinic because you may hear what you don't want to hear. I think he can't tell you what you need to hear - a correct diagnosis. It seems to me he can't seem to face the fact that he can't give you a definite answer.

You have it right, regarding the not knowing aspect of things. With me, the clinic I went to was stymied but the VA neuro didn't hesitate to make the call of PLS for me. In one respect, it does help putting a tag on things but at least in my mind, I'm still hoping for something else.

I just received the notes from my last neuro visit: hyperreflexic with bilateral lower extremity triple flexion responses; unchanged tightness and minimal fasciculations in calves; biparetic gait, slightly greater on the left; orbicularis myokymia on the left; there may be a little atrophy in the flexor carpi radialis mid forearm.

I think its chicken pox. A week or two and it will all be gone, except the memory...

Zaphoon
 
Sharon, they may be very good neurologists but they are only doctors. An ALS clinic is so much more than just doctors, when I go to mine I get about 10 minutes with the doctor and about 2 hours with speech language pathologists, dietitians, physiotherapists, respiratory technicians, social workers and all of the other support staff that makes living with this disease bearable. You do need some answers and you also need some help and hopefully the clinic can give you both.

Barry
 
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