What do I do now ?

[JerryD]

I think I posted this earlier today. But maybe I didn't.
I was dx'd with Primary Progressive MS in 2009. I saw several neurologists, one of whom is the director of the MS center at Univ. of Penn Hospital. His opinion confirmed my diagnosis. I was told that there was no FDA approved medication to treat PPMS.
I have started to consult with a new neurologist, who is an MS specialist. He has prescribed Tecfidera and I have been taking it for about 2 weeks. I haven't noticed any improvements but I have found that I am getting more 'disabled', in the last few weeks. My balance is worsening. My manual dexterity is getting worse. I am more fatigued and easily distracted.
I live in my home with my wife and child. My wife works during the day and my child goes to school. I am worried that very soon I will not be able to be alone. Where do I go frm here? Do I try to find someone to 'baby sit' me. I don't know where to turn. Any suggestions?

[Marco]

It sounds like you are carrying this impossible burden alone. I would suggest you find help, people to come alongside you and help carry you along. Have you tried physical, occupational or speech therapy? Have you spoken with a qualified counselor? The first three, can help you work on energy conservation, improved tactics and potential areas of improvement. The last, can help you navigate the days, especially when no near-term benefit exits.
I would also suggest you find a way to get out of your house. Even sitting outside, breathing fresh air may improve your spirits. I sat compressing a sofa cushion for the past 2+ years and it was depressing. I have been doing PT, but little else to improve my situation. There will be periods when maintaining functional capacity will be more important than achieving new gains.

PPMS patients certainly have the hardest row to hoe. What I do know is despair can only rule and reign where no hope remains. Always try to believe in something; God, science or a even a vitamin bottle. I believe in you and know that you can do this, maybe not alone, but you can do this. Hang in there my friend and I wish you well.

[Seasha]

I'm sorry you are faced with this right now, Jerry. I'm just wondering if some of your worsening symptoms might be the result of side effects of Tecfidera? You've been on it for 2 weeks. I've read that some of the s/e are less than desirable especially when going up to the 240mg dosage.

Here is a post you might want to read. People post about crippling fatigue, gait problems, weakness, etc early on. http://www.msworld.org/forum/showthread.php?t=127654

I know it's just a "shot in the dark", but wondering just the same. I hope things turn around for you!

[Jules A]

Unfortunately this is something all of us with this miserable disease needs to consider and plan for.

Do you want to stay in your home or are you thinking about possibly looking into nursing homes? If you want to stay in your home there are options such as home health care and adult day care centers but I wonder how the family members deal with the person's needs for the rest of the hours in a day. Its not as if a 9a-5p visiting nurse technician can meet all the needs of someone until the next morning.

[bree2013]

I have started to consult with a new neurologist, who is an MS specialist. He has prescribed Tecfidera and I have been taking it for about 2 weeks. I haven't noticed any improvements but I have found that I am getting more 'disabled', in the last few weeks. My balance is worsening. My manual dexterity is getting worse. I am more fatigued and easily distracted.

Hi Jerry,

As Seasha mentioned, perhaps your decline over the past few weeks is due to Tecfidera. With your doc's consent, maybe you could stop Tec and see if these things get better.

Quite a few people have had some of these negative s/e's when take Tec.

I wish you well
Bree