I viewed your video clips and I thought they were excellent and very informative.
In your clips, you said to “start early, start now…” I started very early by discovering MS very early. I started the combi - RX trial with the NIH . We are studying if takingAvonex and Copaxone together are better than taking just 1 or the other. Each of us is guaranteed at least 1 and probably receives both of them. My friends and Doctor say the medicine is working.
I am interested in your knowledge about cognition and want information about improving my cognition. I’ve research it some and discovered a medicine that could improve cognitive skills. Please tell me if you know any other things that could help me return to being “one of the sharp tools in the work shed…” Here is a website that interests me -http://en.wikipedia.org/wiki/
Keep up the good work…,
Answer:
Thank you for the kind and encouraging words. If this is something
that other people want as well, we can continue it in the future at
other meetings (and even in between).
CombiRx is finally finished recruiting and we should be seeing results
in the next 2 - 3 years. Based on the earlier safety data, I have been
using combined glatiramer acetate (copaxone) and beta interferons
(avonex, betaseron, rebif and soon: extavia) with a lot of success
(but this is obviously uncontrolled).
As you point out, MS is a lot more than movement and walking.
Cognition (memory or thinking) may be affected by MS as well and we
are trying to figure out better strategies to deal with this troubling
symptom.
For more about the causes of cognitive problems in MS (it is not
always as simple as blaming the MS plaques themselves), see:
http://www.healthcentral.com/
This is why it is so important to talk to your neurologist to figure
out what is causing your symptoms. You may also want to be seen by a
neuropsychologist.
In another post, I reviewed ways of treating these symptoms, see:
http://www.healthcentral.com/
The website you point out reviews many different medications to help
cognition, as well.
Also, don't forget other techniques, besides expensive
pharmaceuticals, such as yoga, tai chi, crosswords and sudoku.
Question:
transverse myelitis (TM) and trigeminal neuralgia (TN) is the shooting
pain that can come from MS lesions in various places (including
possibly the high cervical spinal cord).
It sound slike both of them come on (are uncovered) when you are
stressed or overheated and this may explain why swimming helps. The
deep breathing may be useful, not only in making it easier to breathe
when you have tightness around your chest or abdomen, but may also
relax you. The relationship between MS and stress is a tricky one, but
we do know, at the very least, that stress can worsen MS symptoms.
A pseudorelapse means that there is not actually new inflammation or
MS activity, but that older symptoms are uncovered. This is usually
because of an overheating of the nerves -- for more about heat
sensitivity and it causing something called Uhthoff's phenomenon --
see:
http://www.medhelp.org/posts/
Neurologists treat TN and TM with symptomatic medications, like
oxcarbazepine (trileptal), other epilepsy drugs (not because you have
seizures) and even antidepressants. When these symptoms are new or
especially severe, neurologists may consider steroids (intravenous
methylprednisolone, intramuscular or subcutaneous ACTH or high dose
oral prednisone). I also use a medication called compounded
4-aminopyridine (soon to be available as Fampridine SR by Acorda
Therapeutics and hopefully another similar medication Nerispirdine by
Sanofi-Aventis many years from now). This medication prolongs action
potentials (electricity in the nerves) and thereby allows a greater
statistical chance for electrical nerve conduction to proceed. At
first some people with TN complain that their pain worsens because
their nerves are working better, but soon the nerves actually do work
better and the trigeminal neuralgia is better controlled.
Sometimes patients are given intravenous (IV) phenytoin (dilantin) or
fosphenytoin to break a severe attck of TN.
I reviewed medictions above, but there are, of course, other
therapeutic options, such as acupuncture.
Question: Are there drugs, especially tablets in the pipeline for people like me with P.P.M.S.? I am disabled, and feel left on the side line.
medications work mostly in relapsing remitting MS (RRMS).
We often use chemotherapies in the treatment of progressive MS -- such
as, mitoxantrone (novantrone), cyclophosphamide (cytoxan), etc.
More recently there have been trials with dirucotide (MBP8298), with
unfortunately negative results.
There are ongoing trials with FTY720 (fingolimod) and many of us
believe that rituximab (rituxan) works in progressive MS (despite the
clinical trial) -- we will see what happens with ocrelizumab.
At Neurologique, we are working diligently on developing a medication
for progressive MS; once clinical trials commence, we will be sure to
announce this prominently.
diagnosed with MS. After several years of Avonex, she finally found a
"Lyme" dr. who tested her & says with 90 percent certainty that she has Lyme
Disease. Symptoms are much the same; several different Lyme tests were done
to confirm the Lyme diagnosis.
Does Avonex & doxycycline (sp?) make a bad mix? Does revving up her immune
system with the Avonex & taking the antibiotic at the same time to fight off
the Lyme infection make any sense or detrimental in any way? She is
particularly mad that she's been on the MS drug for about 5 years and it may
have been Lyme that whole time. The expense of the MS drug has not been easy
to deal with and she's had to quit jobs shortly after starting them due to
the fact that some insurance companies don't cover her drug and she didn't
know the drug wouldn't be covered until after she got on their insurance and
checked with the carrier only to find out what drugs were or were not
covered.
Keep the questions coming.
Medical Director
Neurologique
info@neurologique.org
www.neurologique.org
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