Thursday, September 10, 2009

Multimedia Sources (MS)

As I attend ECTRIMS and look for answers, the questions keep coming in:

Question:

What can you tell us about trials and developments with estriol? Like many other patients who inject their medication, I am eagerly awaiting an oral medication.

Thank you for your devotion to finding MS answers.

Answer:

As I am sure you are aware, there are many other medications in clinical trial development (orals, intravenous/IV and even some more injections under the skin).

Estriol is a pregnancy hormone secreted by the placenta and the rationale for its use is that woman have MS more than men and MS seems to be its best during pregnancy (I think only the second and third trimester) and worsens after delivery.

The question is whether these observations are going to translate into an effective and safe medication. Also, will estriol only be used in combination (just like Vitamin D is) with a standard MS drug or will it be good enough alone?

There is currently a large trial combining estriol with Copaxone (glatiramer acetate).


Question:

I have had RRMS since 1988. I have had a symptom of all-over itching, with no rash/hives, etc., for the past 10 yeas. Because it was periodic, it was then controlled by hydroxyzine, as needed.

Eighteen months ago, the itching increased in intensity and became a 24-hour symptom - made worse by humidity, heat, fatigue and stress.

I am currently on Singulair, Doxepin, Xyzal and Neurontin daily, with the hydroxyzine again taken as needed when all else fails.

I have talked to my neurologist, primary care doctor and dermatologist, but we have exhausted all antihistamines with little success. I am set to see an MS specialist in October, but my own research has shown me, among other things, the following:

1. Itching is usually a short-lived symptom;
2. It can signal the beginning stages of the more advance stages
of MS; and
3. Novantrone is the medication used at that time.

My question: Is the intensity of this symptom as I currently experience it that rare; and could this signal that I have become Secondary Progressive (I have not had a relapse in many years, but previous symptoms have increased in duration/intensity).

Thank you for any help you can give me.

Answer:

Other people report itching as an MS symptom -- it probably stems from sensory disturbances or from involvement of the autonomic nervous system (unlikely).

I think that before jumping to conclusions like SPMS and novantrone (mitoxantrone), it behooves you to see your new MS neurologist.

Not having a relapse for many years, could be an indication that your MS has changed to secondary progressive, or it could be a good sign that your MS is well controlled and then the symptoms you are having may just worsening for other reasons (such as core body temperature, etc.).

Your neurologist may consider the use of compounded 4-aminopyridine, but this would be an off-label use of the compound.


Then the power of the MS community was felt through the Multiple Sclerosis Patient Network (M*S*P*N) with this patient's response back:

Thank you so very much for replying to my question. I will definitely take your advice. If it's okay, I'll let you know the outcome after I see the specialist next month.

Please feel free to use my question on your blog. It is so hard to get information about itching - anyone with this problem who reads your advice will know they are not alone.

Again, thank you for your reply and detailed advice. You are the only doctor who has been able to give me any direction - I can't say what it means when someone with a chronic illness is finally given some hope for relief from such an annoying symptom.


As always, stem cells are a big question and we received several questions, such as this one:

Question:

Many MS patients are going to Costa Rica, Panama & Israel for autologous stem cell transplants.
Improvements are reported by numerous patients. .
What is your opinion of the efficacy, safety and value of these treatments? Also, do you believe the improvements will continue for these patients or revert back to their previous condition?
And, when do you see the US, Canada and the European countires offering
this treatment?

Answer:

The jury is still out on stem cells.

You probably remember all the excitement in the 1990s surrounding genetic engineering; since then there have been little advances in helping diseases.

Stem cell research is still in its infancy and in all of the protocols patients are first given very heavy duty chemotherapies/immunosuppresants, which contribute to most of the benefit in treating MS.

Stem cell transplantation is also a risky procedure and is especially dangerous in unregulated countries.


The question is going to be how we direct stem cells into the damaged areas.


- Dr. Daniel Kantor, MD BSE
Medical Director
Neurologique

info@neurologique.org
www.neurologique.org

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