Anyone here have info on MS?

[CTyankee]

Our dearest friend, who has had MS for many years, is getting worse and having to cancel outings we plan. He says he shakes too badly to leave his apartment, sometimes temporarily losing some bladder and bowel control. We try to do our best for him but he still suffers an awful lot and we feel terrible for him.

I know Annette Funicello died of her MS and I am scared we are losing our friend to it, too. He's only 62 and his body was pretty much worn out after spending 35 years as a welder and plumber. Thankfully, he had a good union and has many medical benefits and an ample pension.

Are there any hopeful studies out there on progress being made by medical science for MS?

[FarPoint]

1. I'm an Infusion Nurse....

I give a lot of Sounedrol IV in the spring to MS clients. Exacerbations rise in the spring. Also, I have several clients on monthly Tysarbi. All helps.

[CTyankee]

4. He has a primary care physician but I wonder why he hasn't been referred to a specialist.

I guess I shouldn't second guess the guy, but I feel so terrible for him.

Thanks for the info. I'll ask him about the Tysarbi.

Good to know the seasonal impact. He's been out of commission lots this spring...

[FarPoint]

12. A good Neurologist is definitely desired.

There are some great meds out there for MS...He needs a Neurology consult at the very least in my opinion.

[CTyankee]

13. I'm seeing him (hopefully) this coming weekend for brunch...I'll ask...

Thanks. I didn't know what specialist would be in charge of this particular medical problem...now I know...you have been helpful...

[tridim]

2. I've been hearing lots of good things about Cannabis and MS.

http://norml.org/library/item/multiple-sclerosis

Hopefully your friend has the freedom to give it a try.

[CTyankee]

5. He never has mentioned cannabis. He does smoke cigarettes and

I'm sure he would try the cannabis. And I think we have legalized medical marijuana here in CT...

[VanillaRhapsody]

6. I had 2 friends die from M.S.....both tried marijuana....

one believed it helped and one didn't...ymmv

[CTyankee]

7. well, it sure wouldn't hurt and might help and it might ease his anxiety...

he does have a tendency to self medicate with beer and wine...hell, I don't blame him...

[Downwinder]

3. Heat is detrimental for someone with MS.

If he is having problems speaking and understanding he will probably avoid going out.

The National MS Society keeps up on research pretty well.
http://www.nationalmssociety.org/

[CTyankee]

8. thank you for the link.

[blindersoff]

9. I have MS...

although mine is a mild case so far, diagnosed in 2010 with very little disability at this point (fingers crossed -- could change at any time).
Several things to keep in mind:

being followed by a neurologist who specializes in MS is very important (as primary care docs know very little about it and even regular neurologists are stymied by it)

Smoking cigarettes is really not good for people with MS and it is recommended quitting if at all possible

Many people with MS have low Vitamin D levels. If he's not on Vitamin D, he should have his level checked and take it daily (I take 4000 IU/day)

Heat can be debilitating, so many people with MS don't leave their air conditioning much during the summer. During cooler weather, people with MS often feel better.

Outings are often difficult, as a person could leave home and just a car ride or a walk from the parking lot could sap all his energy and make some of the symptoms greater.

MS symptoms can wax and wane, so he could recover some or most of his abilities (or not).

MS is a puzzling and individualized disease, which affects everyone differently. Some, like me, are not affected too badly (my main symptom was optic neuritis which has taken some of my field of vision). My cousin, on the other hand, has had a course of MS that has put her in a wheelchair

A good website/message board (which I have found invaluable) for people with MS or those who have relationships with them is http://www.msworld.org/forum/index.php

[CTyankee]

10. thank you so MUCH for sharing that! It really helps me understand the disease/condition.

I will inquire about his finding a neurologist who specializes in MS. I was pretty surprised that he hadn't done that already...

[Thor_MN]

11. I have a High School friend with MS. We are 51.

He is going out of the country for a treatment, Alemtuzumab aka Lemtrada, because it has not yet been approved by the FDA. I hope it works for him.

In about a month, I will be riding from Duluth to Minneapolis in the CH Robinson MS150 bike ride. (Shameless plug, I work for CH Robinson) I've raised about $1000 each year for the last 5 years for the MS Society. Last couple years have been rough with the late springs, lack of good weather cuts into training time.

[CTyankee]

14. Best of luck to you for future bike rides! Sorry to hear of the delays...