MS in all its glory

Lollipops23 · 02-08-2018 08:51AM

byhookorbycrook wrote: »

Being honest,any of the MS drugs will have side effects. They tinker with your already dodgy immune system.

I've been on Gilenya since day 1 (coming up on 3 years) and have thankfully had no new lesion activity at all since.

The first 18 months on it were rough though; got every cold and infection going. Felt like I was sick constantly.

I think a combination of getting used to the drug and taking better care of myself have helped, I only get sick a normal amount now!

byhookorbycrook · 04-08-2018 08:26PM

Carrie6OD wrote: »

Hey folks, does anyone have any experience with Fampyra? Possiblt going on it soon for a months trial to see if it improves my distance walking at all. Should I expect some dodgy side effects?

Never had any side effects, I was involved in the process to make it funded through the HSE. Only 1/3 of patients find it successful. For me, the walking speed was not the best part, I had a decrease in muscular pain and was able to walk further. (I actually surpassed the time done by the hospital caretaker who was used as a control|!!)

embee · 13-08-2018 11:39PM

Had MRI results almost two weeks ago - not a single active lesion one year post round two!!! Neurologist was happy to tell me I won't need anymore lemtrada for the foreseeable, or perhaps I may never need it again ever in my life! Can't say enough good things about lemtrada, it's halted my galloping, aggressive MS in its tracks. The neurologist told me that there was an incidental finding on my MRI that there is a nodule on my thyroid. Gonna be having an ultrasound scan on it soon and possibly a biopsy. Went googling thyroid nodules like an absolute dope (when will I ever learn like?!) and got totally freaked out. Thyroid issues are a very common side effect of lemtrada so I am hoping that's all it is. I've read that 90% of thyroid nodules are benign, but am still a bit worried. I've no sore throat but I am a bit hoarse and of course I've convinced myself that it is gonna be something really bad. Can feel a small lump in my neck but I think I'm ultra paranoid and feeling things that aren't there. Otherwise it was great to hear that's had no active lesions at all!!! Bout flippin time!! Hope you're all well xx

Lollipops23 · 14-08-2018 08:36AM

embee wrote: »

Had MRI results almost two weeks ago - not a single active lesion one year post round two!!!

Excellent news!! (besides the nodule obvs!) Long may it last!!

discobeaker · 14-08-2018 06:17PM

Like Embee, I got results of my MRI last week. Was kinda dreading it as it was the first MRI I've had since my dad passed away 2 years ago and my letter from the mater was marked as an emergency clinic so I was freaked out they found something but turns out my MRI hasn't shown any change since my first Scan nearly 6 years ago so the copaxone must be doing something right

Hope you guys are all keeping well x

byhookorbycrook · 14-08-2018 06:22PM

Carrie6OD wrote: »

Hey folks, does anyone have any experience with Fampyra? Possiblt going on it soon for a months trial to see if it improves my distance walking at all. Should I expect some dodgy side effects?

I'm on it for a few years, no side effects, must be taken fairly strictly 12 hours apart (with/without food.) I put a reminder on my phone for the first few weeks. Sending you a PM

embee · 22-08-2018 11:09PM

Lemtrada seems to have broken my thyroid, it's overactive and there's a nodule on it! MS is stable thankfully, wasn't in the mood for potentially a second auto immune condition!

Patient11 · 29-08-2018 05:02PM

Does anyone here take Low Dose Naltrexone for MS ?

byhookorbycrook · 29-08-2018 06:24PM

It's not widely prescribed , mainly because there's no real scientific support for it as a stand alone therapy.

I know a few people who took it when newly diagnosed as a disease modifying drug (dmd) and who extolled the virtues, until they had very serious and disabling relapses. Because MS is so varied, you will find individuals who will tell you they are doing really well on all kinds of weird and wonderful things, like goat's blood serum, being stung by bees, rolling around in nettles, rubbing on olive oil 2 times a day (all of which people SWORE to me cured their neighbour's cousin's best friend's sister or whoever)

If you feel it might help relieve pain/spasticity or similar, I'd talk to your neuro.

discobeaker · 29-08-2018 06:32PM

Patient11 wrote: »

Does anyone here take Low Dose Naltrexone for MS ?

I take 4.5mg of LDN every night along side Copaxone. I find it helps alittle with energy levels and fatigue but not much else. As byhookorbycrook says,not much research has been done with LDN but if you feel like it could do you some benefit then go with it.

Carrie6OD · 29-08-2018 09:50PM

Patient11 wrote: »

Does anyone here take Low Dose Naltrexone for MS ?

An Irish lady wrote a book about it. She was living in New York and her husband had MS and she was a massive advocate for it. I got the book from the library when I was first diagnosed (can’t remember the name of it). I have mentioned it to two neurologists for my own ppms and both of them dismissed it as a placebo. I’d probably still try it though!

0lddog · 30-08-2018 10:18PM

BTW :

Public library system catalogue search : https://librariesireland.iii.com/iii/encore/homepage?lang=eng

LegacyUser · 14-09-2018 02:09PM

Hi Everybody,

I have just been prescribed Mavenclad® (Cladribine) is anyone else on this drug to manage their MS. If yes how have you found it.

Many thanks.
MSMAN

Patient11 · 19-09-2018 07:42PM

byhookorbycrook wrote: »

It's not widely prescribed , mainly because there's no real scientific support for it as a stand alone therapy.

I know a few people who took it when newly diagnosed as a disease modifying drug (dmd) and who extolled the virtues, until they had very serious and disabling relapses. Because MS is so varied, you will find individuals who will tell you they are doing really well on all kinds of weird and wonderful things, like goat's blood serum, being stung by bees, rolling around in nettles, rubbing on olive oil 2 times a day (all of which people SWORE to me cured their neighbour's cousin's best friend's sister or whoever)

If you feel it might help relieve pain/spasticity or similar, I'd talk to your neuro.

There is some serious science behind LDN. I think the only reason we don't hear much about it is because its an old drug and there is no money to made from it.

https://www.imt.ie/opinion/greater-awareness-of-ldn-needed-08-09-2011/

eimsRV · 26-09-2018 11:00PM

Anyone who attends Beaumont, could you pm me the number for the MS nurse mobile? I’ve changed phones and lost their number. Thanks

fungie · 27-09-2018 07:54AM

Does anybody have any advice re getting mortgage protection? I had a minor, single episode about 6 years ago. Nothing since and no relapses and amn't on medication. I was diagnosed with CIS but I fear I may still find it tough to get mortgage protection.

What are other peoples experiences?

Salmotrutta · 27-09-2018 09:35AM

fungie wrote: »

Does anybody have any advice re getting mortgage protection? I had a minor, single episode about 6 years ago. Nothing since and no relapses and amn't on medication. I was diagnosed with CIS but I fear I may still find it tough to get mortgage protection.

What are other peoples experiences?

It's a couple of years ago now so it's a bit hazy but I got it (joint mortgage) - I think I had to get a letter from my neuro and we were quoted about double the cost of what it would have been without MS. CIS and no symptoms since should be ok.

tinofapples · 15-10-2018 02:02PM

Hi guys, I meant to post this a few weeks ago but it got forgotten, my mother in law pointed me in the direction of this article in one of the weekend magazines that accompany the papers, might be of interest to someone:

N6fZlQSQZ-ql8p-5GY1651lUcBlYsY4IsUry8hfBA04_LiqM7Z3aISvF1O-S1PIl9v7bUPtlSe_9H1X44vVdocTRRdIz3OQ5EAkjM70e9uwB3P90944XO8Zhx9zBITG2uqo_yzGSe_sOyxcZ4FhDYZoxN2Dp8Qo9FdztvTfQ3sqjJ8d3D5h5lUhDOfmSS4o6-k6vLXNwXwp1jDIcfPLpEr-fCjzADZedUn64EAPlj9zvLQQ6lOMwb41Wn7taB9DTs-ztRclcIOBuJof3tc2Rp6S1FCa3HLxg-wis57kXRLi6W3lwTjJetb12rJPVorb14fGrlFdtstpyICw8iwl52apDL_7qaGIb3xUykIEyNpeT9yTXbTYA0rZ0nO0mjYzPtJJXswQwq7msdA8CzSF3UeTpDGle5KlpKDgRioXtkpkRY8DjAb30e-BBVVDacP0Of6kk8m6WL-fRLt6kyK28WtGSoW7tAXJ2ONtNJOxFGuMNJ96T-j60D8qpDQ0NoDz7BMCZ1u0jSp0pxeXQ2_GKhz4LCO_2AyCSirUE110-USglW0xwomAeiIlEtyz_rMfgb87vFDd3Gv3LqY51eKfA5mrOlnzMlYBIrrpJ9KTeO2UFrynWrWI-eRM_bgFv8fc=w835-h626-no

byhookorbycrook · 16-10-2018 10:07PM

Nothing showing?

0lddog · 16-10-2018 10:52PM

byhookorbycrook wrote: »

Nothing showing?

'twas there earlier. Was a photo of a media article. Pulled?

tinofapples · 17-10-2018 12:03PM

0lddog wrote: »

'twas there earlier. Was a photo of a media article. Pulled?

It was a photo of a media article alright, I didn't know whether it was appropriate to post but I can still see it there.

0lddog · 17-10-2018 02:09PM

tinofapples wrote: »

It was a photo of a media article alright, I didn't know whether it was appropriate to post but I can still see it there.

Nothing shows using Firefox.

Little square box shows if using Internet Explorer.

Something for the keyboard wizards to figure out ?

eimsRV · 21-10-2018 09:46PM

I’d my gall bladder removed two weeks ago by general anaesthetic. They warned it could trigger a flare up or relapse. The last few days I’ve been feeling off, head foggy and sometimes unable to focus, pins and needles, light headed. Has anyone any experience on how a GA impacted them and if they’d a flare up was it short? Feeing utterly down ðŸ˜•

embee · 21-10-2018 11:07PM

Jesus, my legs tonight. They feel like they're made of lead, hard to drag them around. Finally dragged them into the bed and I am numb from the mid-thigh down. Feet are just dead numb, can't waggle the toes on my right foot at all. The right foot is the one with the foot drop, but they're not usually this bad. I have the usual racing heart and sweating going on from my overactive thyroid... I'm wondering if my metabolism constantly flying (despite beta blockers and medication) could be causing all this? My head is wrecked

hope you're all okay.

Heno106 · 22-10-2018 01:56PM

Hi,

I'm going through a tough time with my MS and missing work because of it, constantly have that feeling of standing up too quickly but I could be standing for ages and constantly feel it, it's horrible, along with my right foot spasming. Have many people had this feeling and what helped you? My neuro has asked me to go on gabapentin to try help it, I'm not keen to go on it because he hasn't given me any sort of explanation as to what this symptom is. I'm not one to just throw meds into my body without knowing why I need it. I take gilenya each day and that works a treat to be fair but the symptoms have progressed while the lesions have stopped progressing since starting on it 2 and a hal years ago, thankfully. Any insight into this feeling or what you did to help it would be great.

Thank you.

roses479 · 11-12-2018 06:18PM

Hi,
I'm going anon for this one (family members on boards) but has anyone ever heard that the lesions typically show up in a spider like pattern? Basically I have some lesions and some symptoms and was referred on the back of these from my rhuemey (he believed MS) but the neuro guy said I only have 8 or 9 neuro symptoms and the lesions didn't show up in the typical spider like radial pattern so he believes its not neurological or ms and referred me back to my rheumy. Before I go and tear the rheumy a new one, should I ask for a second opinion or does this sound right to you guys? I'm not looking for medical advice more just what would you do advice? Or any advice in general?

tinofapples · 12-12-2018 11:15AM

I'll share this link in the unlikely event that some of you aren't aware of this youtuber (Aaron Boster) :

https://www.youtube.com/channel/UCkQopiiFbAo0zS_9BmRF3Bg

I've watched quite a few of his videos and they are quite informative and a source of knowledge in between appointments

ash23 · 12-12-2018 02:16PM

roses479 wrote: »

Hi,
I'm going anon for this one (family members on boards) but has anyone ever heard that the lesions typically show up in a spider like pattern? Basically I have some lesions and some symptoms and was referred on the back of these from my rhuemey (he believed MS) but the neuro guy said I only have 8 or 9 neuro symptoms and the lesions didn't show up in the typical spider like radial pattern so he believes its not neurological or ms and referred me back to my rheumy. Before I go and tear the rheumy a new one, should I ask for a second opinion or does this sound right to you guys? I'm not looking for medical advice more just what would you do advice? Or any advice in general?

Never heard of any pattern or noticed any pattern in my lesions. A quick google brings nothing up either.

I only have a smattering of lesions and they form no pattern that I can tell.

byhookorbycrook · 12-12-2018 08:50PM

Never heard of a spider thing either, most of my lesions are in my c spine, though there are a few brain ones, that would be some size of a spider! Neuro showed me the original MRIs and no pattern was evident.
Some good "typical " images here:
http://www.radiologyassistant.nl/en/p4556dea65db62/multiple-sclerosis.html

byhookorbycrook · 12-12-2018 08:53PM

Heno106 wrote: »

Hi,

I'm going through a tough time with my MS and missing work because of it, constantly have that feeling of standing up too quickly but I could be standing for ages and constantly feel it, it's horrible, along with my right foot spasming. Have many people had this feeling and what helped you? My neuro has asked me to go on gabapentin to try help it, I'm not keen to go on it because he hasn't given me any sort of explanation as to what this symptom is. I'm not one to just throw meds into my body without knowing why I need it. I take gilenya each day and that works a treat to be fair but the symptoms have progressed while the lesions have stopped progressing since starting on it 2 and a hal years ago, thankfully. Any insight into this feeling or what you did to help it would be great.

Thank you.

Do you mean you feel unsteady on your feet? Gabapentin will help in sorting neuropathic stuff and can help with some spacticity as well

MS in all its glory

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