why your CRAB?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

why your CRAB?

Postby ga_kristy » Sun Oct 09, 2005 9:00 am

trying to do research on the best CRAB, for my newly dx son. The DR. says we can help in the decision, but there are so many good and bad things about each one.

Please let me know what made you choose the one you use. And how do you feel about it. Side effects, the amount of times you use it. etc.


thank you.

kristy
User avatar
ga_kristy
Getting to Know You...
 
Posts: 18
Joined: Thu Oct 06, 2005 3:00 pm

Advertisement

Postby LifeontheIce » Sun Oct 09, 2005 10:05 am

Hi, Kristy. I am on the antibiotics for MS and doing well. MRI of my brain resembled encephalitis as well. Your son sad story reminded me what Sarah Longlands once wrote to me about the youngest of Dr Wheldon"s patients. A child who went from the smartest in his class to the dumbest one. The physicians were hopeless. He was able to regain all functions following the antibiotics therapy. He had the Chlamydia pneumoniae encephalitis. It might be helpful to get him tested first, before starting injections that only delay progress of the disease.
Barbara
User avatar
LifeontheIce
Family Elder
 
Posts: 113
Joined: Wed Jul 06, 2005 3:00 pm
Location: Chicago area

Postby ga_kristy » Sun Oct 09, 2005 11:14 am

he did have the ADEM encephmylitis(sp) w/ possiable MS. but with more testing they did dx MS.
User avatar
ga_kristy
Getting to Know You...
 
Posts: 18
Joined: Thu Oct 06, 2005 3:00 pm

Postby adjanimals » Sun Oct 09, 2005 11:24 am

Kristy,
How old is you son? What symtoms? Did you get second and even third opinions from other doctors? Just asking cause sometimes I feal doctors use MS as a scapegoat when there are not sure. Toss the subject of trying LDN (low-dose naltrexone) at your doctor. Check out the web sit, www.lowdosenaltrexone.org
He/She will most likely shoot it down, as it hasn't been trialed or there just to ignorant to check it out.
User avatar
adjanimals
Family Member
 
Posts: 93
Joined: Sat Jul 10, 2004 3:00 pm
Location: Minnesota, USA

Postby JFH » Sun Oct 09, 2005 11:47 am

Kirsty

Have a look at this site http://www.msdecisions.org.uk much of the content is UK biased but it might help you - there are some short videos of jabs, perhaps makes them less scary. Hope it helps you make your choice for your son.

My principle reason for choosing Betaferon wont help you I'm afraid. I'm 51, a long way up the age scale from your son. I'm diagnosed with RRMS. The stats for the progression of the disease in older men with late diagnosis, like me, are not good. Average time to a progressive condition is 6 years. Betaferon is the only DMD available in the UK for SP - hence my choice. (Averages of course are a mid-value with as much weight above as below - so I've not settled on 6 years :wink: )

Good luck to you and your family in whatever you decide.

Also I was chicken about the jabs and chose the shorter needle :oops: subcutaneous rather the intermuscular!
John
I am what I am
User avatar
JFH
Family Elder
 
Posts: 288
Joined: Sun Jul 11, 2004 3:00 pm
Location: England

Postby LifeontheIce » Sun Oct 09, 2005 3:03 pm

Kristy, since you are in contact with Sarah already, I will add one thing.

ADEM is only a form encephalitis presents. Obviously, they got no clue what it was caused by since they decided to call it MS.

Good luck!
B.
User avatar
LifeontheIce
Family Elder
 
Posts: 113
Joined: Wed Jul 06, 2005 3:00 pm
Location: Chicago area

Postby ga_kristy » Sun Oct 09, 2005 5:06 pm

B. who is Sarah? and I dont get what you mean by that last statement. They didnt know what caused it so they decided it was MS.
User avatar
ga_kristy
Getting to Know You...
 
Posts: 18
Joined: Thu Oct 06, 2005 3:00 pm

Postby LifeontheIce » Sun Oct 09, 2005 5:41 pm

Sarah is Anecdote, also Dr Wheldon's wife. Check your private messages.

MS is a garbage can where neurologists throw everything they cannot explain. This way thay don't have to practice humbleness.
User avatar
LifeontheIce
Family Elder
 
Posts: 113
Joined: Wed Jul 06, 2005 3:00 pm
Location: Chicago area

Postby SarahLonglands » Mon Oct 10, 2005 3:34 am

Hello Kristy,

As B. said, look in your private messages box, located near the top on the left hand side of every page and you will find my mail. Read it carefully and try to take it all in. Ask me any questions you have.

In the meantime, if you really want to start one of the CRABs, Avonex or Betaferon I would say are the ones to go for. John gave you one very good reason above, for kids of any age!

Also I was chicken about the jabs and chose the shorter needle subcutaneous rather the intermuscular!


Only consider this if you insurance covers it, because they are very expensive. You don't want to bankrupt yourself unnecessarily and they only modify the disease by reducing the number of relapses.

Apart from that, diet is very important for everyone, not just people with MS, and Melody can talk endlessly about diet and supplements. In the other thread you started in this forum she mentions Vit D and omega 3 fish oil as being critical. She is right. Fish oil for ADHD as well as MS, so you are killing two birds with one stone here.

http://www.oilofpisces.com/attentiondeficitdisorder.html

http://www.bbc.co.uk/science/humanbody/mind/articles/intelligenceandmemory/omega_three.shtml

Try not to get too worked up about all this, your son will sense it and act accordingly. Think about everything said here and in Melody's postings and my Private Message.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service