Thanks so much for your question Donna.  Primary-Progressive MS must be really difficult manage.  So when you and your doctor are not in sync, it can be frustrating.  If you already haven't tried, you might try expressing your feelings to you doctor and other practioners at the clinic.  It might be that they are just not clear on what you need from them. Honest and open communication is essential for your continued care.

As well, you might consider finding other tyoes of support - through groups that focus on MS.  Maybe there is a local chapter of an organization that could offer something more than strictly medical care.  Finally, you can look at other doctor and hospital options in your area.

Hope this helps and all the best, sue

Hi Donna. I read your question and had to respond.  I too was diagnosed with MS in August of last year. We need to make sure we have cheesecake or something to celebrate that anniversary. All joking aside, I have multiple lesions and have switched neurologists because I was feeling the same way that you are--not getting anywhere. I have been told that I am functioning well for the number of lesions and where they are located. I am on all the same meds as you are (it is great to meet you) I get frustrated wondering if there is anything else I can do to feel better.

It sounds like you are doing all of the right things with your vitamins and staying active. Have they put you on any MS therapy? I read somewhere about the IV drug Tysabri being used for primary progressive MS. That is what I am on--3 infusions so far. I was told that I probably have RR, but I still am not sure what they use to determine the label they give us. I will be 40 in August, and somedays it is hard to think of working full-time for too many more years. I just take it one day at a time.

Don't feel bad about calling your docs to get more answers. You are your best advocate---that is what I am finding out through all this. You deserve answers and cannot sit idle in this disease. I was so thankful when I switched neuros and kind of proud that I made a step to be my own advocate. I still have not much faith in my general doc, but I will take MS info to her to read. When my legs feel like concrete, I diagnose myself with an infection and I am usually right! Then I tell them what to prescribe. I might actually send them a bill! Have a great day and keep your chin up.

Shelly

Shelley

I smiled when I read your cheesecake comment!! ( I love cheesecake by the way)

I think what I need to do is reach out to others and ask questions!

( I mean others that have MS not health care ppl).

I just get frustrated sometimes when I feel 'alone' in my quest for answers. Maybe a retreat gathering at a Ranch would be a neat way for people to get together..hmmm.. now thats an idea.

I will continue to 'do what I do' and do it with a smile on my face the best I can.

Donna

Hi Donna!

I was just surfing the net for any kind of new info on pri-prog ms and I came across your question.  My mother-n-law has pp ms and has been on just about every kind of med you can think of.  I have watched her for 15 yrs, trying to come up with something that works.  And this is what I have concluded.  First of all, doctors will put you on anything and everything.  Why is this?  In her case, I believe it is done to give some kind of hope...but what has happened is she is almost broke from paying out muchmuch $$$ on the different kinds of treatments (I have a prob with the partnering of doctors and pharmaceutical co.s).  But physically, nothing.  She was just told last week that they were taking her off Tysambri (thank God!) after having injections for over a year.  ONce again, no substantial claims that this med helps pp ms, but the doctor is pacifying her mental need for medication.  SO DANGEROUS!  How do we know the med is not working?  Her brother had the same type ms and never took any type of injectible drug and his rate of progression was the same.  Sooooo...in drawing conclusions, I and my husband (her son) have begged her to not waste her disability check on the needless round of drugs.  Her best bet was (and is) physical therapy (keep the muscles working), rest, and if one feels like they need some type of therapy, then try the natural way (ie bee stings, flaxseed oil, oxygen therapy-used often in UK).  As for the doctor's bedside manners, she has gone through the same.  I believe the prob is they just don't know what to do....

I WILL be praying for you and for those dealing with this disease.  God is walking with you.

Trea