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MouseDoctor

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  • Dear Prof G

    could you update me on the PML risk in relation to dimethylfumarate (Tecfidera)?

    How likely is this to happen if one starts with fumarate (after a 8 months break from fumarate & other drugs)? My relapes are killing me so I need to re-start it but have a great fear of developing PML. Thanks

    • Thank you Mouse – I would be starting Fumaderm until Tecfidera comes out (hopefully) at the end of this year so it's about Fumaderm and PML risk. I don't know how to decide but the relapes are bad and I am on NO meds whatsoever now for months.

    • The PML cases on Fumaderm are very dirty; most of the cases had other predisposing factors. The only so called 'monotherapy' case had run a severe lymphopenia on Fumaderm and refused to stop the treatment about being advised to do so. Therefore I think the risk of PML in MSers on Fumaderm or Tecifedera is very low (<1 in 10,000) and not a real concern for those considering treatment. Untreated MS would be a much more worrying concern than PML.

    • Thank you both – but I have experience with Fumaderm (dosage etc.) because of my psoriasis. It's just a matter of months before switching to Tecfidera (Can anyone say WHEN will it be definitively licensed in Europe? What is now the reason for the wait?). I need meds cos relapes bad as hell. I'm thinking of doing a JVC-test (privately!!!) just in case to calm my nerves down re PML. Also I will get blood (liver enzymes/leukozytes) regularly now.

      Best

      Anna

  • Hello!

    I have a question about digestive issues.

    Prior to the start of my MS symptoms in November 2012, I could count the number of times I suffered any sort of indigestion issues on the fingers of one hand (I’m almost 40). During 2012 and into the start of 2013 (thankfully nothing since, and I sincerely hope I don’t jinx myself by writing that!), I had 7 instances of crippling pain caused by trapped wind, seemingly with my solar plexus at the epicentre, but going all the way up and down my back, over my shoulders and all around my diaphragm. Most of these instances lasted around 4-5 hours, but the last instance lasted over 10 hours of severe pain and another 24 hours of lesser pain – I actually took myself to A&E where the nurse suggested it was IBS, although the pain was only superficially abdominal.

    I do not think that this was the MS hug as it didn’t feel the way I’ve read the hug described and the “evidence” in each episode was that it was trapped wind (I think having one’s fiancé assist with the burping process really adds to the sexiness of a relationship, n’est pas?!). When I spoke with my current neurologist at our first meeting in January this year, I asked about whether the indigestion was a symptom or an unhappy coincidence: I was told it was the latter. Reading the MS Society’s forum and a few other national forums, there seem to be quite a few of us with the onset of a variety of tummy problems at the same time as we begin to suffer MS symptoms, but we all seem to be told it has nothing to do with our MS.

    Whilst I appreciate that I have absolutely zero scientific research experience and the “evidence” here is anecdotal, how do you KNOW that our problems have nothing to do with MS? It seems a bit odd to me that all kinds of other symptoms are accepted as MS-related, yet our digestive systems are excluded: do they run on different nerves?

    Thanks in anticipation of an educational or at least amusing answer, and as ever, thanks for all your hard work!

    • This is a problem my neurologist solved for me. Following a bout of surgery, I grew very fatigued and slept a lot. I started to have a croaky voice and the need to cough. I put this down to the aneathetist's tube down my throat. This went on for a year, before I mentioned it to my Neurologist. He sent me to an ENT doc and I had stomach acid damaging my throat. I was told to sleep with my head raised, not to eat before bedtime and lay off citrus, orange juice etc.
      Also, I take medication. It has never come back. I thought it was my MS that's why I told him.

    • Same with me! I thought my MS was making my swallowing worse and had to cough in the middle of the night but it was stomach acid. I also try to sleep on two pillows, don't eat sour stuff before sleep and take meds if necessary to stop the acid production. Sometimes it's not MS which is responsible but it was a bit of a panic to wake up and have a coughing attack.

By MouseDoctor

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