December 8, 2019 at 5:12 am
You can join this facebook international group about anti mag peripheral neuropathy based in France with several members from USA,France,Great Britain,Israel…..
https://www.facebook.com/groups/1592338124143555/?ref=bookmarksFebruary 11, 2018 at 5:14 am
I do not remember the rate of flow per hour of ivig treatment, but it was very slow.
I was hospitalized Monday to Friday night, allergists have not made the link between skin allergy and ivig.
Although this is rather common.
I felt an improvement that allowed me to resume the race on foot.
For about a year the disease progresses slowly to the limbs my conduction velocities and sensitivity are worse at the last emg.
I’m actually walking less quickly and I’m less sure on my feet
Ivig are in the front line when anti-mag neuropathy is not too severe, immunosuppressive drugs are second-line.
Take care of yourself
ChristopheJanuary 27, 2018 at 4:17 am
I am Christophe the person in France who opened an anti mag group on Facebook, my username here is Matou
I am very pleased that the ivig gives you a better self-evident, it is the first intention of treatment for the forms of neuropathies anti mag very slow in their progression
On the facebook group you will find in the files a guideline on the treatments, it is the last leaflet of JM Vallat
I also had 4 years ago two cures on a week of ivig with a better being, I stopped because I made an allergic reaction.
all the best for everybody
MatouJanuary 23, 2018 at 9:38 am
This information to follow
The Obinutuzumab (GAZYVA), a Potent Anti-B Cell Agent, in the Treatment of Rituximab-Unresponsive IgM Anti-Myelin-Associated-Glycoprotein (MAG)-Mediated-Neuropathy will be submitte to the American Academy of Neurology annual meeting April 2018
MatouJanuary 22, 2018 at 7:44 am
and if you want “my” small facebook group about neuropathy anti magJanuary 22, 2018 at 7:29 am
Hi Peter and everybody,
Polyneuron and the IMAGiNe study are in contact with various hospitals and reffenral centers of rare diseases in Europe and in the United States.
Your doctors will certainly be contactedso that you can be part of the cohort of patients according to certain requirements.
I enclose a very interesting link of Dalakas of January 15, 2018 , wich discusses new treatments to come and humanized monoclonal antibodies Ocrevus.
Take care Matou from FranceJanuary 14, 2018 at 6:23 am
A very very interesting link about the international workshop in the Netherlands on February 2017
You must absolutely share these informations with your doctor or medical team
Matou from FranceJanuary 12, 2018 at 5:34 am
The link about Kusajili:
https://www.kusajili.com/Trial/Index/0e652b18-b9fd-4679-9547-0d605a264028January 12, 2018 at 5:30 am
When i share the information about Polyneuron on this forum , we must be patient for the orphan drug, it’s very controlled : http://ec.europa.eu/health/documents/community-register/html/o1893.htm
Another information for you
My control EMG lasted a good hour at the Reference Center for Rare Neuropathies at the Kremlin Bicêtre Hospital.
Performed on the four limbs with this time the two techniques on some nerves on the surface and invasive (needles), I wonder about the quality and the reliability of this examination for the follow-up of the anti-Mag neuropathy. I see the neurologist at the end of February for the results.
This review gives me the opportunity to post two links about the QTRAC method that would be much more appropriate for tracking. I can not get an answer from the Adolphe de Rothschild Ophthalmological Foundation that tests this method.
Have you heard of it?
Matou from FranceNovember 10, 2017 at 7:45 am
I hope you are fine and well
You can join this group on facebook about anti mag neuropathy if you want:
MatouAugust 25, 2017 at 5:29 am
Thank you Heidi, for this information about Polyneuron, it will be a good news for us if the orphan drug will be the good treatment.
I saw my neurologist and he offered me rituximab,i prefer to wait to try this molecule, i mainly tingling in feet, conduction speeds slowed and loss of sensitivity.I have fasciculations in the feet, i walk slowy about 12000 steps a day, i am rather tired.
I hope that you will have Heidi improvements after your second treatment and not too adverse effects.
Take good care everyone!
MatouAugust 22, 2017 at 1:54 pm
I share this information on July 2017 about the orphan drug:
Matou from FranceAugust 15, 2017 at 4:27 am
Dear Heidi and dear 5523Cats,
I apologize if my english is very rough, i am French and i live near Paris.
This is interesting information about current research.However, the outcome of current studies does not presage marketing authorisation for the time being, and i have not heard for therapeutic trial.
I see my neurologist next week,I’ll talk to her, in september in Marseille, a seminar will address in part the anti-mag neuropathies.
I wish you the best and take care of yourself.
MatouAugust 12, 2017 at 3:06 am
Perhaps an orphan medicinal product in Europa
Do you know about Polyphenyl?
MatouAugust 12, 2017 at 2:58 am
Thanks you for this precious information