MS in all its glory

byhookorbycrook

discobeaker wrote: »

I wanted to go private but started off in the Mater public with optic neuritis but when I was diagnosed i was told not to be changing from public to private by some of the staff as it was "frowned upon" and you can get lost in the system by moving! I hope you have better luck than I've been having in the Mater as of late

Feck that!Staff can frown all they like :mad:

tinofapples

Hi guys, I've been experiencing difficulties over the last 2 yrs and was recently told by my Neurologist that he thinks two spots of inflammation (one on my spine,one on my brain) are possible MS. As a follow-up he recommended I have treatment. I'm after a 5 day infusion of Privigen immunoglobulin, just finished on Friday and I'm devoid of any energy and have a headache. Is this normal after the treatment ? The weather probably isn't helping either.

Thanks.

byhookorbycrook

Has he actually confirmed MS?
IVIG is sometimes used for inflammatory conditions and primary immune deficiency. It can certainly cause headaches. If you turn out to actually have MS, you will probably find fatigue an issue and especially during warm weather.

tinofapples

byhookorbycrook wrote:

Has he actually confirmed MS? IVIG is sometimes used for inflammatory conditions and primary immune deficiency. It can certainly cause headaches. If you turn out to actually have MS, you will probably find fatigue an issue and especially during warm weather.

Hey , thanks for the reply. No confirmation as yet, his plan is to try the ivig and see does he make any difference to my life and I guess take it from there. How is MS actually confirmed ? I'm pretty sure he would have explained much of this to me but so much of our conversation went over my head. I was kicking myself that I didn't use the phone as a Dictaphone rather than try to remember all that was said to me on the day. He said I could be very unlucky in that I may have MS and another condition called HSP which my mother and older brother have !!

byhookorbycrook

MS is difficult to diagnose, MRI and lumber puncture usually needed. I didn't need the LP, as I was in mid-relapse at the time. I'm not sure you'd be allowed record the consultant, but bringing someone in with me and writing out all my qs beforehand helped me.
Apart from the headache and fatigue, have you other symptoms (don't ans. if that's too nosey!)

tinofapples

Oh Jesus yeah I have lots of symptoms, left leg gone very very weak, almost dragging it around, bladder problems, a blur in my left eye and issues with balance to name but a few. I had the MRI done and he said he sees inflammation on that, had a lumber puncture done in January but can't recall had he anything specific to say about that. I'll be better prepared for the next q and a !!

byhookorbycrook

All of the above could indicate MS, I'd be pushing to get a bit more information and seeing what the plan is. If it does turn out to be MS, you need to get on a treatment ASAP- it's proven that the sooner you get on a disease modifying drug, the better in the long term.

When I was diagnosed , it was only the rather crappy "CRAB" drugs- avonex, betaferon, rebif and copaxone. I'm on a particularly effective treatment now, called Tysabri, which wasn't available then.

tinofapples

byhookorbycrook wrote:

When I was diagnosed , it was only the rather crappy "CRAB" drugs- avonex, betaferon, rebif and copaxone. I'm on a particularly effective treatment now, called Tysabri, which wasn't available then.

byhookorbycrook wrote:

All of the above could indicate MS, I'd be pushing to get a bit more information and seeing what the plan is. If it does turn out to be MS, you need to get on a treatment ASAP- it's proven that the sooner you get on a disease modifying drug, the better in the long term.

Thanks very much. The consultant's plan was to see me again a few weeks after the immunoglobulin treatment so I'll get on the blower in the morning to keep the push on. I appreciate your knowledge and advice. It sounds like he should have everything he needs to diagnose one way or the other , no ?

byhookorbycrook

The problem is there is no one conclusive test for MS, but with the information he has to date and seeing if the IVIG helps might put him in a better position. My case was pretty clear cut, after my MRI. Initially it was thought that my dragging left leg was due to disc damage and one too many falls off a horse!

murfilein

sooo.... has anyone here tried cbd oil? does it do anything for you?

i suppose the easiest way to get it is to buy the stuff from holland and barrett, but apparently it tastes horrible.

byhookorbycrook

murfilein wrote: »

sooo.... has anyone here tried cbd oil? does it do anything for you?

i suppose the easiest way to get it is to buy the stuff from holland and barrett, but apparently it tastes horrible.

I don’t use it , but Holland and Barrett stuff in general is crappy .Do you want it for spasticity ?

vmb

murfilein wrote: »

sooo.... has anyone here tried cbd oil? does it do anything for you?

i suppose the easiest way to get it is to buy the stuff from holland and barrett, but apparently it tastes horrible.

I tried CBD, for neuropathic pain.

No effect at all. Another disappointment in the list. Finally, I joined a trial of low dose ketamine. Wow, what a huge improvement. From a very miserable life to NO PAIN and no side effects, apart of decreased appetite.

It is not an approved treatment yet tho, it needs to be justified. And it is very expensive, 200 eur per month!

Carrie6OD

vmb wrote: »

I tried CBD, for neuropathic pain.

No effect at all. Another disappointment in the list. Finally, I joined a trial of low dose ketamine. Wow, what a huge improvement. From a very miserable life to NO PAIN and no side effects, apart of decreased appetite.

It is not an approved treatment yet tho, it needs to be justified. And it is very expensive, 200 eur per month!

Wow that’s great. Must be amazing to be pain free.

2 years after my ppms diagnosis I am hoping at my next visit the doctor puts me on something to halt the progression. So far there has been nothing to put me on. Very interested in CBD oil for spasticity if anyone has any experience.

Also, is anyone else suffering in this heat?!

byhookorbycrook

vmb wrote: »

I tried CBD, for neuropathic pain.

No effect at all. Another disappointment in the list. Finally, I joined a trial of low dose ketamine. Wow, what a huge improvement. From a very miserable life to NO PAIN and no side effects, apart of decreased appetite.

It is not an approved treatment yet tho, it needs to be justified. And it is very expensive, 200 eur per month!

That's interesting, will be interest to see how it goes. Can you drive on the LDK? Do you have to fund it yourself? I paid for Fampyra until we got it passed as covered on LTI and find it very helpful.

byhookorbycrook

Carrie6OD wrote: »

Wow that’s great. Must be amazing to be pain free.

2 years after my ppms diagnosis I am hoping at my next visit the doctor puts me on something to halt the progression. So far there has been nothing to put me on. Very interested in CBD oil for spasticity if anyone has any experience.

Also, is anyone else suffering in this heat?!

Carrie, have you tried Baclofen for the spasticity? Is there any mention of you getting Ocreveus?Could you get Ritux in the meantime?And yes, to the heat, I'm on my school holidays are present but am basically indoors from 10 to 5 each day!!

LegacyUser

mamakitten wrote: »

Hi all , I'm just wondering has anyone experienced or heard of unilateral sudden onset hearing loss due to MS? As far as I can google it seems to be a relatively unusual one and I'm wondering what's the general treatment and outcome? Thanks !

quote]
Yes!
Me! I lost all hearing in one ear in 1998. Paralysis down the same side during the relapse. The paralysis resolved and I'm fully mobile but sadly my hearing never returned.

Carrie6OD

byhookorbycrook wrote: »

Carrie, have you tried Baclofen for the spasticity? Is there any mention of you getting Ocreveus?Could you get Ritux in the meantime?And yes, to the heat, I'm on my school holidays are present but am basically indoors from 10 to 5 each day!!

I will definitely ask about ocrevus. I got rituximab but after 60ml (of 600!) I developed a bad reaction. Devastated as the doctors really sold it to me as my only option. I think ocrevus and rituximab are basically the same with a few different properties. I’ll also ask about siponimod. Acupuncture, supplements and lots of spirulina have been great for me but I would love a proper treatment. Will ask about baclofen but probably the spasticity isn’t bad enough yet.

byhookorbycrook

Carrie6OD wrote: »

I will definitely ask about ocrevus. I got rituximab but after 60ml (of 600!) I developed a bad reaction. Devastated as the doctors really sold it to me as my only option. I think ocrevus and rituximab are basically the same with a few different properties. I’ll also ask about siponimod. Acupuncture, supplements and lots of spirulina have been great for me but I would love a proper treatment. Will ask about baclofen but probably the spasticity isn’t bad enough yet.

Carrie , I backed off Baclofen for quite a number of years , thinking I wasn’t “ bad” enough to use it . I can’t believe the difference it makes to me now ! I don’t use it all the time but it’s fantastic to have it for when I do need it!

vmb

byhookorbycrook wrote: »

That's interesting, will be interest to see how it goes. Can you drive on the LDK? Do you have to fund it yourself? I paid for Fampyra until we got it passed as covered on LTI and find it very helpful.

I think I could., but I do not drive, I do not have a car

I have to fund it myself, 204 euro per month :mad:
I also have to pay acyclovir (post transplant medication, around 70 euro).

It is expensive to be ill :mad: At least, my health has improved a lot, and I am planning to return back to work asap. First interviews, next week :cool:

tinofapples

vmb wrote:

First interviews, next week

Best of luck with those !! Will you disclose your illness ? I started a job in Feb and my health has deteriorated since, it's the tiredness that's becoming the big issue. Up at 6am and home around 6.30pm with an hr + commute each way. Proving very tiring especially in this weather

murfilein

byhookorbycrook wrote: »

I don’t use it , but Holland and Barrett stuff in general is crappy .Do you want it for spasticity ?

no. since i'm on tecfidera, i'm basically perfectly fine. the only thing i feel is a very slight feeling in my left leg - like when you sit too long on your leg and it starts to go numb, you know? and when you stand up you can feel the blood flowing back in - the very end of that, when your leg still feels numbs just a little bit, thats the only thing i feel constantly, but it doesnt bother me at all.

however i started running a month ago, and after running for 30 minutes i felt a fatigued leg for the first time in over a year. my foot would hang down and i couldnt properly lift it up anymore. i havent had that since i'm taking tecfidera.

i was hoping the cbd oil would improve my running-performance. i've ran 3 or 4 times now, and every single time i feel my leg/foot getting fatigued at around 15 minutes, any by 20-30 minutes my foot is completely gone.

byhookorbycrook

I don't know if the reported benefits of CBD would help your running m being honest. Worth remembering too that the last month has been warm/very warm and that increases fatigue for many Ms-ers.

Lollipops23

I was in for my annual check up yesterday, all going fine after my pseudo relapse a month ago.

We discussed eventually coming off meds for trying to conceive (not on the horizon just yet!) and apparently one of the injectables has been approved for use in pregnancy? Can't recall the name, but really good to know!

vmb

tinofapples wrote: »

Best of luck with those !! Will you disclose your illness ? I started a job in Feb and my health has deteriorated since, it's the tiredness that's becoming the big issue. Up at 6am and home around 6.30pm with an hr + commute each way. Proving very tiring especially in this weather

I usually don't say a word, but this time is going to be difficult, because I've been 1 year out of work (relapses, then bone marrow transplant, and finally recovering) and they ask why I have not been been working (usually a huge red flag).

waxmoth

The following recently published study may be of interest.https://www.cell.com/cell-metabolism/fulltext/S1550-4131(18)30313-9

Intermittent fasting confers protection in the multiple sclerosis animal model through effects on the gut microbiota; similar changes to the gut microbiota were observed in relapsing multiple sclerosis patients undergoing intermittent energy restriction.

From the full paper the fasting consists of restricting food intake every other day –

Inclusion criteria for the study were: 1) diagnosis of RRMS(2010 McDonald criteria) (Polman et al., 2011) and experiencing a relapse as identified by their neurologist and a candidate for steroid treatment; 2) age 18-60 years; 3) a body mass index (BMI) of 23 or higher; 4) absence of ongoing diseases in other systems. Patients were excluded if treated with insulin or warfarin (who must limit intake of some vegetables) or required to follow a special diet or food restriction (e.g. diabetic, gastric bypass). Patients treated with disease modifying therapies (DMT) continued the medication during the study.
... During the IER days, patients were allowed to eat one or two salads (fresh or steamed non starchy vegetables) with a light dressing, not to go over 500 calories/day

I had read about fasting being effective in beginning a reset of the immune system in autoimmunity but it referred to chronic fasting which is not very practical for all but the superhuman. This intermittent fasting whilst still tough would be more manageable and it is presented as a potential adjunct to conventional therapy and not an alternative.

In my experience with two separate autoimmune issues dietary control is dismissed by consultants as of no consequence. The science has been suggesting otherwise for some time (~2500 yrs but particularly in the last 10).

Loveinapril

Lollipops23 wrote: »

I was in for my annual check up yesterday, all going fine after my pseudo relapse a month ago.

We discussed eventually coming off meds for trying to conceive (not on the horizon just yet!) and apparently one of the injectables has been approved for use in pregnancy? Can't recall the name, but really good to know!

It is Copaxone. It was approved while I was pregnant last year but I had come off it to concieve. I went onto Tecfidera in March but just stopped taking it to try concieve again. The doctors advised a 3 month break from those meds before trying.

vmb

tinofapples wrote: »

Best of luck with those !! Will you disclose your illness ? I started a job in Feb and my health has deteriorated since, it's the tiredness that's becoming the big issue. Up at 6am and home around 6.30pm with an hr + commute each way. Proving very tiring especially in this weather

Well, finally I got a new job, starting this Monday. I am terrified, it's been a year since I had to quit!

At least my commute is great, and the timetable is flexible. I always feel miserable taking the Dart, so I'll try to skip rush hour

In the past, the commute part has been my personal hell. I mean, working was ok but commuting in a packed train drains ALL my energy. I guess that this is something very common between us.

Sometimes, especially during bad relapses, has been so tough to be standing up, and as we look healthy, no one is going to give up their seat

tinofapples

vmb wrote: »

Well, finally I got a new job, starting this Monday. I am terrified, it's been a year since I had to quit!

At least my commute is great, and the timetable is flexible. I always feel miserable taking the Dart, so I'll try to skip rush hour

In the past, the commute part has been my personal hell. I mean, working was ok but commuting in a packed train drains ALL my energy. I guess that this is something very common between us.

Sometimes, especially during bad relapses, has been so tough to be standing up, and as we look healthy, no one is going to give up their seat

Hey, hope the new job went well, couldn't agree more with what you said. My job isn't an issue for me, it's the tiredness of the day as a whole that catches up with me. Looking healthy reminds me of what my manager said when I informed him of my situation ... "you present as a healthy looking person"

It's a month tomorrow since I began my week of Immunoglobulin and I can safely say I see no change. I enquired in my local health store about the CBD oil and the girl suggested Mag365, she says she has lots of customers very happy with it, with various ailments including MS.

Has anyone here tried it ?

pedro87

Hi everyone. first time posting. i have just been diagnosed with rrms. its been a pretty ****y last month to say the least! i was presribed avonex and now the avonex nurse is ringing to try to get me on the injections.
im not sure about taking it as the side affects sound worse than my symtoms.....

Anyone have any advice about avonex? take /not take. or any better medications? . im pretty new to all this and am trying to get my head around it all.

byhookorbycrook

Please, please don't waste time with Avonex, it's really ineffective (about 30 %) and damage done in the early years will haunt you. Push for a proven effective treatment like Lemtrada or Tysabri (both about 70$. I blame Avonex for all the damage to my left leg but at the time there were no better drugs available. I'm pm-ing you.