Hi EddieF, yes needing a ty fix is very common. I have heard many talk about it. I had it all my 1st year on ty and am not sure when it stopped for me, but it did sometime in my 2nd year. I use to count the days till my next "fix". I recall it well and yes I had a minor increase in sx like tingles... I think you are fine. Please let us know how your next fix goes. Sorry I'm late!

I'm considering again going off ty due to problems with my lungs. I'm always sick and quality of life is low b/c of illness. My GP has run out of of drugs to give me. I've been on Rocephin (sp) shots for over a year and usless antibiotics. We have tried them all till they stopped working. I do not know what to do.

My neuro states my MS is folowing my ilness. They are correct. On the few days where I'm not as ill as ususual - MS is much better. When illness is worse - MS is out of control. I wish so I was like the rest of you. I sould be fine and have a happy nornal life with ty, but I smoked. My mistake - my price to pay.

I am told the MS shot drugs are not aggressive enough and will make me sick. Will they hit my lungs as hard? Or do u think LDN... I'm at a loss here.

I was dxed 2-16 while in attact. 2 attacks since. I just came out of the last one.

Please forget I'm 49 and consider me (due to lungs) 60 plus. What would you do? I doubt few if any will respond - so best wishes to all.

Love and respect always

Pink, I'm so sorry that you've been ill and it's making you sx worse!!!!!!! I have a problem with chronic sinus and ear infections. But, fortunately, they have been responding to antibiotics. I can tell when an infection is at the "I need antibiotics now" stage because my m.s. sx get much worse. Until I hit that stage I drink lots of hot fluids, use a nasal irrigator and sit in a steamy room. I wish the antibiotics had helped you as much as they have helped me.

Does your neuro think the oral meds coming out this fall may help you?????? It's the only thing I can think of. I have heard that the oral med may cause problems with one's heart and liver. But, other reports speak very highly of it. I think your neuro is the only one who can give you a medical opinion on the orals.

hugs,
Shayna

Hi Shayna, I've got puter problems and couldn't hold a connection sooner - on kids now.

Thank you very much for your post. I'm sorry to hear you have infection problems too, but very happy the antibiotics are working. I didn't know anyone had a problem like this b4 your post.

I have not talked to my neuro or nurse about Fingolimod since Dec. Then, he said to put one one this drug was like taking them off a proven drug (with sides pretty much know) to go with one he feels is unproven... I do know if he has changed his mind. I asked to be put on ty every 2mos (so I could get my health up), but was told no. I'm sick now but supposed to go in for ty on Tues and will get & post more info when I have it.

I have read Fingolimod has sides such as lung infection, macular edema, and an increase in skin caner especially for those who have been on ty. Those are my major concerns so far along with the risk of a flairs from coming off TY.

I'm going to try for ccsvi, but hold out little hope there due to my location and cost. Time will tell, but I now am ready to risk it, if I can get it. I know I'll have to be on some drug even if I can get it.

I think Natalie8 has found a great neuro. I really think she is getting great advise from hers,and her posts are extremely informative. I would encourage all to follow them. Thanks again Shayna

I'm ba-a-a-a-ck!
Had an ever so long and lovely vacation. Spent most of it on an island with many screaming children and their sometimes screaming parents. Saw most of my nieces and nephews and grand nieces and nephews and godsons and a younger brother who I resisted fighting with (even though he was an ***!)

I am stiff and sore from too much activity. I swam and climbed and ate and drank too much. It wasn't easy moving 30+ people back and forth with all their assorted gear!

We installed a new sink, finally gave up on the 100 year old cast iron antique that no longer can be repaired. I found a giant used 2 bowl stainless steel sink for $20.00 and it was fitted and installed in a day! Who knew that a stupid sink could make so many young dishwashers so happy!

I came out of hiding long enough to have my 42nd infusion on 08/12. As usual, no problems, no concerns! Still waiting for my results from the JCV test. Sadly, the 50%+= rate is not proving out at my neuro's office. Everyone who has been tested through his office so far has come back positive for JC exposure. I've got my fingers crossed that I will be his first negative!

I did my annual walk, talk, mini mental, etc. and he is still insisting that I at least TRY Ampyra (4-ap) He thinks I may benefit from it since I continue to have spasticity and stiffness (it was very visible when he saw me because I was on vacation and having too much fun!) so I am signed on. He says we will know in two weeks whether it is working for me. I haven't started yet. I wanted to wait until I was done with vacation and for some reason they have to investigate my insurance benefits? I'm going to try it for one month. I hate adding more meds to the regimen but if it works, better living through chemistry!

Hope everyone's doing well! It's back to work for me and I didn't want to get out of my car and go inside the first night back!

When I get my infusion in Sept I will have completed 4 years on Tysabri

RW, your vacation sounds delightful, the part you were physically capable of doing sooo much - the yelling kids (parents) not so much
I am really happy for you
Linda

I had infusion #36...I think.....on Friday,August 20. It was stressful because although I had the card with my appointment listed on it at the infusion center they had me listed for September 3 After a lot of begging and pleading they finally gave me the infusion. They had a bag of Ty for a patient the following week and gave it to me instead. They said they had plenty of time to order Ty for that other patient. I left for Califoria after my infusion so that I could be here for my grandson's first day of kindergarten. I'll go back home on August 30.

My neuro still has not received the viles for the stratisfy 2 test for PML. They don't know when they will receive the viles but will call me as soon as they do. I'm really fed up with this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I've been fending off another sinus/ear infection for the past two weeks. So far I've been lucky and have not needed the antibiotics but, it's just a matter of time before I need to begin them again. My neuro has no diea why Biogen has not sent out the viles for the blood draws.

RW, I'm glad you had fun. Grammie, I'm thrilled that you're doing so well. Pink, I wish I knew what to tell you. I've been getting so much different information about the oral med I don't know what to believe. I don't see my neuro again until October. I'm going to ask her then what she thinks about it.

If I don't make it into thje stratisfy 2 program before it closes I may say the heck with it and go off the Ty. I I don't like feeling like I'm playing Russian Roulette. Ty has been good for me but I don't like knowing there is a blood test to see which patients are more susceptible to PML and I may not be able to get it because Biogen is dragging their feet. From what I have read those patients who are diagnosed with PML quickly have a much better chance of surviving with little disability. But, that doesn't change the way I feel about the blood test. If I don't receive it I don't think I will remain on Ty. This is simply too streesful

I'm sorry but I'm just feeling extremely stressed over everything that concerns m.s. and the only thing keeping me sane is the time I'm spending with my grandchildren.

hugs to all ,
Shayna