MS in all its glory

Carrie6OD · 17-08-2019 9:34pm

Loveinapril wrote: »

Is anyone using CBD oil? I want to try it and would love a brand recommendation.

Me too... would love to know more about this.

Nigel Fairservice · 17-08-2019 10:12pm

Loveinapril wrote: »

Is anyone using CBD oil? I want to try it and would love a brand recommendation.

What does it do?

adam88 · 18-08-2019 3:19am

Nigel Fairservice wrote: »

What does it do?

Meant to be the business. Doctors will informally tell you it’s great but won’t officially tell you it’s good.

As long as I won’t fail a roadside drugs test I’m all for it.

byhookorbycrook · 18-08-2019 6:54pm

CBD is most likely the same as Baclofen.

Loretogirl · 24-08-2019 4:05pm

England’s MS Site: mssociety.org.uk has an article on CBD oil, interesting read.

Nigel Fairservice · 02-09-2019 12:13am

Does anyone get pain in the soles of their feet? I'm wondering if it's my MS or something else.

Salmotrutta · 02-09-2019 12:10pm

Similar query. Anyone get a persistent muscle twitch? My lower right eyelid has been twitching constantly for a couple of months now, it's a tiny twitch that you wouldn't see, but I can feel it the whole time. Same eye I had optic neuritis in. The eyelid often feels heavy, even though it works fine, presume the muscle is a bit tired from contracting the whole time. Not something major but I'll certainly mention it to my neuro when I see him next.

byhookorbycrook · 02-09-2019 7:44pm

Nigel and Salmon, yes to both and yes to being most likely MS related. Gabapentin and amitriptyline help with the soles of the feet for me.
Eye twitch may be Muscle Facilitation, Baclofen might help, but talk to the neuro.

Nigel Fairservice · 02-09-2019 8:34pm

Salmotrutta wrote: »

Similar query. Anyone get a persistent muscle twitch? My lower right eyelid has been twitching constantly for a couple of months now, it's a tiny twitch that you wouldn't see, but I can feel it the whole time. Same eye I had optic neuritis in. The eyelid often feels heavy, even though it works fine, presume the muscle is a bit tired from contracting the whole time. Not something major but I'll certainly mention it to my neuro when I see him next.

I get a twitch in my eye as well. Not bad enough for anyone but me to notice though. I only get it the odd time.

byhookorbycrook wrote: »

Nigel and Salmon, yes to both and yes to being most likely MS related. Gabapentin and amitriptyline help with the soles of the feet for me.
Eye twitch may be Muscle Facilitation, Baclofen might help, but talk to the neuro.

Thanks, I'll say it to my neurologist next time I see her. The soles of my feet are at their worst in the morning when I get out of bed.

byhookorbycrook · 03-09-2019 8:31pm

Well, who has been told to go to Knock and get cured?All over the media yesterday that a woman with MS was miraculously cured in Knock. Closer examination of the case shows that she was never diagnosed with MS in the first place!

https://www.independent.ie/irish-news/i-didnt-go-to-knock-that-day-for-a-cure-ms-sufferer-recalls-day-a-miracle-changed-her-life-38461632.html

"A consultant neurologist who reviewed the file wrote to Dr Murray that "it would be fair to say she has been cured of neurological symptoms but not of MS. It seems to me that Mrs Carroll had medically unexplained symptoms which have now (thankfully) resolved." "

https://www.rte.ie/news/ireland/2019/0901/1073162-church-knock/

embee · 04-09-2019 12:50am

Off to the neurology day unit tomorrow as my leg has gone completely numb from the knee down, the numbness is so pronounced that my AFO inficted a nasty cut to my leg which I never felt. On further investigation I have virtually no sensation at all from the knee down. My balance has been off too.. Anyone get marked worsening of numbness like that?

byhookorbycrook · 04-09-2019 11:49pm

Any chance you have an infection?Hope you are ok?

cj maxx · 12-09-2019 8:48am

Oh, thank God that humid warm weather is gone !
No need for cooling wristbands and cold showers.
Cold weather, woo hoo !

Lollipops23 · 12-09-2019 10:15am

byhookorbycrook wrote: »

Well, who has been told to go to Knock and get cured?All over the media yesterday that a woman with MS was miraculously cured in Knock. Closer examination of the case shows that she was never diagnosed with MS in the first place!

https://www.independent.ie/irish-news/i-didnt-go-to-knock-that-day-for-a-cure-ms-sufferer-recalls-day-a-miracle-changed-her-life-38461632.html

"A consultant neurologist who reviewed the file wrote to Dr Murray that "it would be fair to say she has been cured of neurological symptoms but not of MS. It seems to me that Mrs Carroll had medically unexplained symptoms which have now (thankfully) resolved." "

https://www.rte.ie/news/ireland/2019/0901/1073162-church-knock/

This kind of stuff makes me disproportionally angry. I know it shouldn't, but it just feeds into the list of BS 'cures'.

cj maxx · 12-09-2019 1:03pm

Lollipops23 wrote: »

This kind of stuff makes me disproportionally angry. I know it shouldn't, but it just feeds into the list of BS 'cures'.

Now lollipops, it only works if you BELIEVE !

NewMan1982 · 12-09-2019 8:14pm

I’ve been having sciatic like pains in both legs and other nerve pain in my arms lately. Got tested at the doctors today and one of my reflexes is abnormal. The Babinski Reflex.

I’ve been referred for an MRI and to see a neurologist.

I know googling is the worst thing you can do but MS keeps coming up as a possibility for the symptoms I have.

adam88 · 13-09-2019 9:57am

Back from Spain Monday morning and came back with some virus. By god I thought I was a gonner, my balance went from me. Felt very like the time I was diagnosed with MS. Frightening. All cleared up now thankfully

Lollipops23 · 13-09-2019 11:20am

adam88 wrote: »

Back from Spain Monday morning and came back with some virus. By god I thought I was a gonner, my balance went from me. Felt very like the time I was diagnosed with MS. Frightening. All cleared up now thankfully

I had a simple head cold last week and I was truly knocked for six. Fatigue is still high, my hand numbness is still bad. Viruses really exacerbate symptoms and even something as minor as a cold affects them.

byhookorbycrook · 14-09-2019 9:09pm

NewMan1982 wrote: »

I’ve been having sciatic like pains in both legs and other nerve pain in my arms lately. Got tested at the doctors today and one of my reflexes is abnormal. The Babinski Reflex.

I’ve been referred for an MRI and to see a neurologist.

I know googling is the worst thing you can do but MS keeps coming up as a possibility for the symptoms I have.

Babinski isn't exclusive to MS, but can be part of it. How soon is your MRI?

Nigel Fairservice · 05-10-2019 9:51pm

Back from the doctor today. I'm on chest infection number 4 for the year.

adam88 · 05-10-2019 10:55pm

Nigel Fairservice wrote: »

Back from the doctor today. I'm on chest infection number 4 for the year.

Are you on Gilenya???? I’ve noticed I’m picking up a lot smaller stuff as of late

Nigel Fairservice · 05-10-2019 11:13pm

adam88 wrote: »

Are you on Gilenya???? I’ve noticed I’m picking up a lot smaller stuff as of late

I'm on Tecfidera. I've definitely picked up a lot of sniffles since I've been on ms medication. I suppose it's repressed immune systems. I have spent a lot of money this year on doctor's visits and prescriptions.

adam88 · 06-10-2019 4:11am

Nigel Fairservice wrote: »

I'm on Tecfidera. I've definitely picked up a lot of sniffles since I've been on ms medication. I suppose it's repressed immune systems. I havd spent a lot of money this year on doctor's visits and prescriptions.

I’ve had defo 4 times the amount of things I’d usually have. I refuse to take antibiotics unless they’re give through a vein. Your body needs to fight as much as it can

07-10-2019 1:46pm

Anybody have issues with balance partically when eyes are closed? Thanks

Carrie6OD · 07-10-2019 2:45pm

Sunnyspot wrote: »

Anybody have issues with balance partically when eyes are closed? Thanks

Always! Eyes open or closed!

07-10-2019 3:41pm

Thanks but specifically when closed only?

MyAccount · 07-10-2019 4:07pm

@ Sunnyspot

I Have had ongoing issues for about three years. (My MS symptoms first appeared about 5 years ago). Definitely worse with eyes closed but am told by (medical) people, who should know what they are talking about, that it is common even normal amongst the general population, that our balance is worse when we close our eyes, so the basis the eyes closed bit doesn't concern me unduly.

About two and half years back I had lots of issues with balance including some pretty severe episodes of vertigo (which was very debilitating at the time and caused some pretty nasty falls and yucky nausea).

I am lucky to have a top drawer GP who referred me on to a Vestibular Specialist. I also regularly work with a Neuro Physiotherapist so between them while not quite as good as in the old days, it is much less problematic, except when I get tired / overdo it. (These referrals were private and not inexpensive, and can't comment on what might available in the public system, or otherwise, so depending on your situation, these may not be an option but definitely benefited me massively).

We are different, and what works for one may be completely inappropriate for others so while I recommend the above, go talk with a professional.

My best wishes; and sympathy, I know only too well that these things can be scary and debilitating.

byhookorbycrook · 09-10-2019 5:08pm

If I need to wash my hair in the shower and close my eyes, I need to lean against the wall to avoid falling in a heap. My "open eye" balance is somewhat compromised, but closed is cat!

Loveinapril · 10-10-2019 10:38am

Yeah my balance when I close my eyes is shocking. I remember my first physio appointment for my leg. The physiotherapist was doing a general check and asked me to stand on one leg with my eyes closed- she had to catch me as I started to fall over!

sqooka · 10-10-2019 2:54pm

Sorry if this has already been discussed earlier, this is a long aul thread to go back through. I've been on fingolimod since 2014. The first couple of years were no bother, a total dream by comparison with copaxone. But last year and this year particularly I've just been constantly sick. I've basically been sick with a cold for 3 months so far this year (2 separate colds). The first one eventually cleared with antibiotics and I just started for this one as it suddenly got worse again yesterday. A couple of things changed at the same time as this (moved in with boyf so no more daily cycling), asthma got worse, so I'm wondering if that has anything to do with it. Has anyone else not been able to shift colds on fingolimod? Or found they caught everything going? Or found it grand for a while and then suddenly not grand? Any comments are very welcome!

MS in all its glory

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