MS in all its glory

Sunny Dayz

byhookorbycrook wrote: »

Gillenya is a disease modifying drug. Gabapentin is for treating sensory issues like the pins and needles.

okay.... the only symptoms my husband has are pins and needles and he was prescribed Gilenya...
Never heard Gabapentin? mentioned...

byhookorbycrook

It's used for neuropathic pain, so unless he complained that they were severe he may not have been considered in need of it.

Sunny Dayz

Ah yeah it's not severe, just annoying

Lollipops23

byhookorbycrook wrote: »

Gillenya is a disease modifying drug. Gabapentin is for treating sensory issues like the pins and needles.

Ah it's not painful or even all that uncomfortable- just new!

byhookorbycrook

Keep a note of any new symptoms that last more than 48 hours. Remember that cold/heat/having an infection can mimic new things.

JenniFurr

Hi guys, I had a lumbar puncture on Tuesday (15/12/15) and I've got a pretty severe post dural puncture headache. Anyone know a what point I should ask for a blood patch?

cj maxx

JenniFurr wrote: »

Hi guys, I had a lumbar puncture on Tuesday (15/12/15) and I've got a pretty severe post dural puncture headache. Anyone know a what point I should ask for a blood patch?

Caffenine , coffee and tea seemly helps , and headache tabs with caffenine

eimsRV

JenniFurr wrote: »

Hi guys, I had a lumbar puncture on Tuesday (15/12/15) and I've got a pretty severe post dural puncture headache. Anyone know a what point I should ask for a blood patch?

I hope you are feeling better now. I had a lumbar puncture as an in patient, still had headache after 3 days and they just recommended caffeine and I also had pain killers.

JohnMearsheimer

I finished my first round of Tecfidera. It was mostly ok. I experienced flushing which was fine for the most part. My face felt really red and I got a slight burning sensation in my cheeks like I was really embarrassed by something. It only lasted a few minutes each time and it went away. Sometimes my body went really red and itchy like I was wearing a big woolly jumper as well but would pass after a few minutes. I did get the odd stomach cramp as well (the longest one lasted about an hour) but I think that was my own fault for not eating properly before I took my medication. The side effects seem to be lessening the longer I'm on the medication but the ones I experienced were pretty bearable all the same.

I have to get my blood taken around now as well. I think it's for this PML thing. The hospital were a bit sketchy on it. I don't know if I contact my GP to take my blood or if the hospital gets in touch with me. I'll give my GP a ring during the week anyway and see what he says.

Lollipops23

Not sure if anyone can advise- my next check up (MRI/bloods etc) is scheduled in the Mater for next May 5th. My mother lives abroad, but wants to come home for whenever I get my results. Any rough idea when I can expect these? Like a week after the tests?

byhookorbycrook

JohnMearsheimer wrote: »

I finished my first round of Tecfidera. It was mostly ok. I experienced flushing which was fine for the most part. My face felt really red and I got a slight burning sensation in my cheeks like I was really embarrassed by something. It only lasted a few minutes each time and it went away. Sometimes my body went really red and itchy like I was wearing a big woolly jumper as well but would pass after a few minutes. I did get the odd stomach cramp as well (the longest one lasted about an hour) but I think that was my own fault for not eating properly before I took my medication. The side effects seem to be lessening the longer I'm on the medication but the ones I experienced were pretty bearable all the same.

I have to get my blood taken around now as well. I think it's for this PML thing. The hospital were a bit sketchy on it. I don't know if I contact my GP to take my blood or if the hospital gets in touch with me. I'll give my GP a ring during the week anyway and see what he says.

Would buscopan help with the cramps?


PML test is quite specialist, it has to be done a certain way and then sent to Denmark, so I doubt your gp would be doing that.
I'd imagine the regular bloods are to monitor your white cell count.

"Tecfidera may affect your white blood cell counts, your kidneys and liver. Before you start Tecfidera, your doctor will do a blood test to count the number of your white blood cells and will check that your kidneys and liver are working properly. Your doctor will test these periodically during
treatment. If your number of white blood cells decreases during treatment, your doctor may consider interrupting your treatment "

byhookorbycrook

Lollipops23 wrote: »

Not sure if anyone can advise- my next check up (MRI/bloods etc) is scheduled in the Mater for next May 5th. My mother lives abroad, but wants to come home for whenever I get my results. Any rough idea when I can expect these? Like a week after the tests?

Have you a neuro nurse you can ask? Our MRI results take about 2 weeks, unless the neuro is away when it can take longer, but she is the only neuro in our hospital so other places might be faster.

Lollipops23

byhookorbycrook wrote: »

Have you a neuro nurse you can ask? Our MRI results take about 2 weeks, unless the neuro is away when it can take longer, but she is the only neuro in our hospital so other places might be faster.

I have a neuro nurse alright- she generally takes days to respond to messages (she's a busy lady!) so thought I'd ask here to see if anyone had any direct experience.

outnumbered82

I have a yearly appointment on Thursday but never got called for MRI is this normal? I feel the app is pointless with our the MRI.

byhookorbycrook

outnumbered82 wrote: »

I have a yearly appointment on Thursday but never got called for MRI is this normal? I feel the app is pointless with our the MRI.

I never had yearly MRIs in the start unless I had relapsed and even then, not each time.

Because of being on Tysabri and being JC + I have one every 6 months at present. If my JC titre level has gone up again (I find out on Sunday) I may need 3 monthly MRIs.

ash23

I'm three years diagnosed and unless I have new symptoms or a relapse I don't have an MRI every year. I had one before I was diagnosed. Then at my 6 month checkup I was sent for another as I was still having relapses. Changed my meds 6 months after that and I had an MRI after a year on the new meds.

I was back in the summer and in and out in ten minutes with a "come back in 6 months". Still no relapses (touch wood) so I expect the same when I go back again in a couple of months.

kieranfitz

My sharps bin for my needles is full, how do I get a new one?

murfilein

kieranfitz wrote: »

My sharps bin for my needles is full, how do I get a new one?

difficult one.

my ms nurse told me to go to the pharmacy, they'll take the bin and give me a new one.

went to the pharmacy, they said they cant do it, ask the hospital.

i go ask the hospital, they tell my they cant do it, go away.

ever since we have our own solution... oh well.

discobeaker

kieranfitz wrote: »

My sharps bin for my needles is full, how do I get a new one?

My chemist has given me bins before or I just call the Copaxone nurse and next time I meet her she leaves me Afew.

Speaking of sharps bins... Anyone any suggestions how to get rid of full ones? I've asked my Copaxone nurse,my doctor,the local hospital and at the local health service office aswell and they are all kinda clueless

ash23

kieranfitz wrote: »

My sharps bin for my needles is full, how do I get a new one?

I used to pop in to the public health nurse and give them my full one and get a new empty one. I don't think they used to be too happy about it but I didn't know where else to go with them.

byhookorbycrook

Pharmacy refused to take them, I used to have to go to local HSE offices, sign several forms, get a key for a bin, then put the closed sharps contained in, relock the bin, hand back the key, then sign more forms.

kilco

ms nurse told me to take them to the public health nurse, which I did, no hassle and she gave me an empty one instead

Salmotrutta

I've been invited to a seminar for Gilenya patients at the end of the month (organised/sponsored by Novartis)... a talk about mindfulness, one about brain health, and ask the expert session (Michael Hennessy, who happens to be my neurologist). Anyone ever been to one of these? Are they worth going to? Might go along anyway, I've actually never met another MSer yet since diagnosis (only a year and a half)...

byhookorbycrook

A lady I knew who was diagnosed ahead of me rang me when she heard my news. She said she avoided MS society meetings/ gatherings and things like the above. Her take on it was that many people who were diagnosed a long time ago had no DMDs and so many of then are quite severely disabled tended to be at all of these events. She felt that seeing this would make her afraid of the future and what it might bring and that we should take each day as it comes.

That said, another lady I know is VERY involved with all kinds of MS events and thrives on it!

Lollipops23

Salmotrutta wrote: »

I've been invited to a seminar for Gilenya patients at the end of the month (organised/sponsored by Novartis)... a talk about mindfulness, one about brain health, and ask the expert session (Michael Hennessy, who happens to be my neurologist). Anyone ever been to one of these? Are they worth going to? Might go along anyway, I've actually never met another MSer yet since diagnosis (only a year and a half)...

Can I ask where you got the invite from?

I'm only diagnosed a few months, but am on Gilenya and it's going grand so far.

Salmotrutta

Lollipops23 wrote: »

Can I ask where you got the invite from?

I'm only diagnosed a few months, but am on Gilenya and it's going grand so far.

It came in a Novartis envelope. It's a Galway event so might be just local people on Gilenya invited, they may be having other events around the country? I'm sure if you wanted to go your Gilenya nurse could arrange an invite.
Glad to hear it's going well, same here, no relapses since starting it and no side effects.

Lollipops23

Salmotrutta wrote: »

It came in a Novartis envelope. It's a Galway event so might be just local people on Gilenya invited, they may be having other events around the country?

I'm in Dublin, so maybe it's just at a different time in the year here!

Yeah no side effects as of yet, but I'm only 2 months on it.

I'm curious as to anyone else's experience- the relapse that got me diagnosed was numbness in my fingers on one hand. I haven't had many more symptoms (although this symptom has gotten worse) but it's been about 8 months now and I'm starting to think the sensation will probably never return. Anyone here never come back out of this kind of relapse?

Obvs, I would expect my legs to have longer term issues in the future, but it's scary to think I may have to live the rest of my days with grip issues and numbness on my hand.

Salmotrutta

Lollipops23 wrote: »

I'm in Dublin, so maybe it's just at a different time in the year here!

Yeah no side effects as of yet, but I'm only 2 months on it.

I'm curious as to anyone else's experience- the relapse that got me diagnosed was numbness in my fingers on one hand. I haven't had many more symptoms (although this symptom has gotten worse) but it's been about 8 months now and I'm starting to think the sensation will probably never return. Anyone here never come back out of this kind of relapse?

Obvs, I would expect my legs to have longer term issues in the future, but it's scary to think I may have to live the rest of my days with grip issues and numbness on my hand.

PM sent

ash23

Lollipops23 wrote: »

I'm curious as to anyone else's experience- the relapse that got me diagnosed was numbness in my fingers on one hand. I haven't had many more symptoms (although this symptom has gotten worse) but it's been about 8 months now and I'm starting to think the sensation will probably never return. Anyone here never come back out of this kind of relapse?

Obvs, I would expect my legs to have longer term issues in the future, but it's scary to think I may have to live the rest of my days with grip issues and numbness on my hand.

I was diagnosed three years ago and still have some numbness and tingling in my leg and arm. It improved a fair bit in the first year and then slightly more in year 2. I don't really notice it now because I'm so used to it.

But it's improved in year 3 aswell as my balance etc is also better and I don't notice the improvement until I go to do something specific like stand on one leg or run etc and then I'll realise that it's improved a lot.

When I'm tired or sick it tends to feel worse and I also cannot tolerate anyone touching the inside part of my arm, especially around my wrist as it's hyper sensitive.
My boyfriend will occasionally absentmindedly start rub my inner wrist with his thumb when we're holding hands and it feels horrible to me and I have to tell him to stop.

So you can probably expect more improvement but it's not assured that it will go away completely.

Lollipops23

ash23 wrote: »

So you can probably expect more improvement but it's not assured that it will go away completely.

Thanks, I'm glad to hear I don't have to rule it out entirely! Fingers crossed (with great difficulty....)!