MS - the gift that keeps on giving

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MS - the gift that keeps on giving

Postby Grumpster » Tue Dec 09, 2008 4:24 pm

Well 2008 has been an unusually crappy year for me. A severe fall and head injury, wicked vertigo for over 6 months now, optic neuritis in both eyes, balance and gait problems, and now a new gift from the MS grinch of the holidays... right arm numb from the elbow down and some loss of function in right hand. Wow.. what next? I can hardly wait to see. The wheel of misfortune keeps on spinning I guess. I am really having a tough time dealing with this new set of symptoms. I am right handed and I feel that losing the function in my right hand will push me over the edge of sanity. I keep telling myself that this will pass. Well it has been over a month and it seems to be getting worse. The vertigo I have had since after the head injury comes and goes, but mostly stays. I feel that I may be entering SPMS. Things seem to stay once I get them. I have been dx for >8 years now.

I am eating right, drinking is down to a glass of wine or beer on rare occasions and I try to exercise when possible - to treat my body right. These have seemingly had no effect on my body doing the same for me. What to do? Nothing? That is what the neuro has up his sleeve - nada.

I hope to start Campath trial shortly, but after reading some of the stories here I am not as optomistic about that.

MS Sucks - Now what?
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Postby CureOrBust » Tue Dec 09, 2008 5:08 pm

Have you had steroid treatment for your relapse / new symptoms?

I am surprised you would speak as you have of Campath, as you are in the midst of a relapse. To me, that would give me even more reason and drive.

I am trying to get it now off-label (I don't fit into either of the current trials), and my biggest concern is that I have dodged having any relapse for some time, and am very very slowly improving. Which makes it harder to stay committed to doing something as serious as Campath, by choice.
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Postby cheerleader » Tue Dec 09, 2008 5:50 pm

Grump...
this year has totally sucked for you in so many ways. Really sorry to hear about your current situation. Are you still on rebif? antibiotics? What are you doing until the campath trials? BTW, as you are well aware, not everything works for everybody...but campath has helped many people-those with complaints are probably more likely to post. Hang in there...you are doing all the right stuff for your health.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: MS - the gift that keeps on giving

Postby Grumpster » Wed Dec 10, 2008 11:35 am

Grumpster wrote:I hope to start Campath trial shortly, but after reading some of the stories here I am not as optomistic about that.


Hello Cheer and AC - just to clarify - I am not pesimistic about the Campath trial, just not as optomistic as I was once I found that I likely will be on it. I just read some real rough stories from people that gave me pause. The way I see it now is a 25% chance of Graves disease is better than a 100% chance that I will continue to get worse at the alarming speed I have been. I am on Rebif which I feel is not effective for me anymore. I had IV steroids and oral taper 2 weeks ago. I stopped antibiotics in August after 8 months of a CAP. The vertigo made me feel the need to stop many of the wild card variables in my therapy in an attempt to isolate what was going on. Now I know through MRI - brain stem lesions. Party--!?$

I feel that I may have been putting too much hope into the trial as my last line of defense. i guess I still am in that position as nothing else is working. - Grumpier -
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Postby Wonderfulworld » Wed Dec 10, 2008 12:47 pm

Grumpster I am very sorry you have had such a dreadfully tough year. Just one of those things would be hard enough to deal with. When they all come together, and new stuff happening like that, it is really draining on your optimism, your reserves, everything.

I hope you are not one of the 25% who get Graves disease on Campath. Odds in your favour but still it's very high risk. I hope it works well for you.

The only consolation I can offer is that I too went through a few years when I got the "works" from MS...bladder, bowel, speech, balance, fatigue, vision, co-ordination...they all went haywire. But over time it eased up. I remember the hopelessness I felt when nothign was really working and I felt I was out of options. Sending you a cyber-hug. { :wink: }
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Postby Lyon » Wed Dec 10, 2008 4:54 pm

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Postby Grumpster » Wed Dec 10, 2008 6:55 pm

I am going for the trial like a bum on a baloney sandwich. :wink: No pain, no gain?! I just waffled a bit.....
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Postby Lyon » Wed Dec 10, 2008 8:25 pm

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Postby gibbledygook » Thu Dec 11, 2008 1:44 am

Have you tried salvia miltiorrhiza (one pot is only about $6 from iherb) or ginkgo or curcumin? I know that these probably don't work for everyone but I am convinced that they are doing something positive for me although I still can't quite figure out the correct dose which is probably far lower than I have hitherto been trying. Best of luck. There must be something out there, even if it's campath.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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new gift

Postby Grumpster » Fri Jan 02, 2009 3:42 pm

Well 2009 is off to an awesome start. My hand numbness is down a little and I am able to use it better now. That is nice but now I have massive numbness in my rt leg and foot. It feels llike I am some sort of pirate walking around on a wooden stump. This last 8-9 months has been crazy like that. Positive note I am set to start the Campath trial later this month after a delay at the site. I switched to an alternate site which has patients already undergoing treatment. Now I just cross the fingers and hope I do not get randomized into the Rebif arn, 20% chance. That would suck and my Campath chance would be shot. Wish me luck with that and the stump foot.
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Postby Loobie » Fri Jan 02, 2009 4:50 pm

Good luck dude. I will pray like hell that you get the Campath. I'm pulling for you man. Let's hope '09 os good for the both of us!
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Postby Grumpster » Sat Jan 03, 2009 12:04 pm

Thanks Lew,

I hope that 09 is much better than 08 was for the both of us. The Campath trial is really the only thing giving me a ray of hope right now. I am going to focus on the 80% chance I get it, not the 20% chance of Rebif crap. I hope you are doing OK. Best to you and family.

Grump - (stump) ha
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Postby MrsGeorge » Mon Jan 05, 2009 5:26 am

I hope you get the Campath. Sounds like 2009 is already looking up. Long may it continue!
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Postby carolew » Mon Jan 05, 2009 7:12 pm

I think that the name of this topic is so appropriate.... make me sick..
Good luck Grumpster...Carole
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Postby Miss_Feisty » Mon Jan 05, 2009 7:44 pm

Arr Grumpster me matey.

Sorry to hear of your ails. The stump thing reminds me of a pirate ready for the attacking ship. At least you have a better persona, I just appear as a drunkard tripping in from the pub. It is horrible but funny some days, I can't help but laugh at my transposed phrases and the places things land when I drop them (across the room).

Falling down is not funny and I hope you were able to heal considerably well.
I hear of your bad bout in 2008 and I'm not far behind at times. I can't help but wonder what the pirate gods are thinking when handing out these things....oh what nerve!

Treatment appears to go with whatever "floats ones' boat". I hope your current choice makes a difference for you. I carry a little optimism around in my purse like a bad tissue. You don't always want to use it, but sometimes you need to.

Good luck and keep believing 09 will be better to you.
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