MS in all its glory

Lollipops23

I too had the optic neuritis, as well as numbness several years ago. I went to the optician with the ON (I didn't know what it was) and she said I was fine. In hindsight, she should have suggested a trip to the doctor. My GP knew I had a family history of MS, and was very dismissive of the numbness (this was 2 years after the ON).

Yes, it's profoundly frustrating. Like you, I had one big active lesion and a whole bunch of old ones when I eventually got an MRI.

You're still trying to wrap your brain around all this; I found it really is like a grieving process- the shock, denial, anger etc. Honestly the only advice I can give you is to be patient with yourself. Let yourself feel angry, scared etc.

Salmotrutta

Until recently, an isolated episode of ON was treated by most neurologists as Clinical Isolated Syndrome - i.e. a one-off event and let's hope it doesn't develop into anything worse. I think that's how many of us first experienced MS and neurology, and we were left alone until we had a second relapse. The very definition of MS is Multiple Sclerosis - i.e. multiple lesions and multiple discrete relapses, so neurologists were loathe to diagnose MS until medical evidence of multiple episodes was present. This may well explain the delay in your diagnosis. Not excusing it, just saying you are not alone in how you were diagnosed.
I believe some neurologists these days are now considering putting people on DMDs from the first onset of ON or other symptoms, not treating it as CIS but the onset of MS, and getting in early to prevent any further damage. Too late for many people, but maybe in the future this will be the norm and it will prevent many debilitating second relapses. The important thing for you now is getting onto the best treatment you can - push for one of the newer drugs, like Tysabri or Gilenya, which have proven very effective in limiting the impact of MS and reducing the number of relapses. In my view aggressive treatment is very important, so don't be afraid to complain if your neurologist favours conservative treatment, and don't be afraid to seek a second opinion.

byhookorbycrook

The most up to date thinking on MS is to hit the b@stard hard, so don't waste time on the CRAB treatments . Insist on things like tysabri or lemtrada from day 1 , they will help delay any progression in a way the injections won't .

byhookorbycrook

Had a long conversation with my neuro at the weekend. PLEASE get the hardest hitting treatment you can from the very start.

discobeaker

Has anyone read this yet?

Interesting news coming out of Queens university in Belfast to do with MS

http://www.bbc.com/news/uk-northern-ireland-39258041

byhookorbycrook

Re-mylating is the gold standard at present. Stem cell is still very new and not available here yet, but has shown some good resul;ts. Like Lem and Ty there are big drawbacks though, so people need to be aware of risk vs benefit.

eimsRV

Was with Neurologist last week and she has referred me as urgent to a neuropsychologist. I have been feeling like my mental health has deteriorated.
Has anyone been? I'm not sure what to expect, apart from a long wait as I understand there aren't many in the country.

Carrie6OD

Does anyway here have ppms? Everyone I have met / heard of has rrms. Was told this week that there is no treatment for me. None. Due to my allergic reaction to rituximab, ocrelizumab will not be a runner. There is another drug on trial called Siponimod... unavailable til next year and at that it's for spms. Is anyone else in this position?

byhookorbycrook

Would you consider stem cell?

Lollipops23

Anyone else experienced this? The last 3 times I've had a bit to drink (not hammered, just a few drinks) I've had a rapid spasm in my right ear. Like a butterfly flapping its wings, far too fast for it to be my pulse.

Carrie6OD

byhookorbycrook wrote: »

Would you consider stem cell?

I would for sure. But I'd need to read up more on it. Neurologist hasn't suggested it

Carrie6OD

Lollipops23 wrote: »

Anyone else experienced this? The last 3 times I've had a bit to drink (not hammered, just a few drinks) I've had a rapid spasm in my right ear. Like a butterfly flapping its wings, far too fast for it to be my pulse.

I have that constantly. You get used to it

TCP/IP

Has anybody been prescribed Daclizumab (Zinbryta) if so how do you find it?

byhookorbycrook

Carrie6OD wrote: »

I would for sure. But I'd need to read up more on it. Neurologist hasn't suggested it

Neuros here won't as it's not done here yet.It's worth researching. It's quite new so you need to keep a critical eye on the information.

Salmotrutta

Anyone else have a problem with cramp? My hands are permanently numb(ish), I have much reduced sensation, but over the last while I seem to have less and less strength in my hands, and get cramp easily after a bit of work that previously would have been nothing remarkable. It's becoming a right pain, pardon the pun.... just wondering if cramping is a symptom.

Carrie6OD

byhookorbycrook wrote: »

Neuros here won't as it's not done here yet.It's worth researching. It's quite new so you need to keep a critical eye on the information.

He did say he had a few of his patients getting it in London... not for me though. I'm not "bad" enough...yet

byhookorbycrook

Sugarman, all the most recent research says that we need to hit MS early and hard. I'm sure sure what you mean by saying drugs caused your MS. There is no known cause of MS, a slight genetic disposition, for sure and MS and lack of Vitamin D are somehow linked too.
Was Dec/Jan your first relapse?if so, you probably won't see an improvement for a bit.

byte

Maybe speak to your GP or someone who could try push the MRI dept to fit you into a cancellation.

Big C

Hi, information for recently diagnosed, may be usefull

http://www.ms-society.ie/blog-articles/2149-new-publications

ash23

Hi all,
I had a relapse over the last month. Mixture of old and new symptoms. Neuro was proactive and I had three days of IV steroids and an MRI. Due back in 6 weeks for results but they want to give the steroids time to work.

All in all, most of the symptoms have gone and I'm back in work. Still a bit of hypersensitivity/tingling in my hand (that was a new symptom but was far worse a week or two ago). In the last couple of days I've been experiencing Lhermittes sign which is a new one on me. Ugh it's horrible. Like bumping your funny bone but the sensation runs down my back and back of my legs when I move my head a certain way. It's happening on and off all day. Parking the car, going to the loo, putting on my shoes, getting dressed or up out of bed.......I suppose I've been lucky to have not had it before now as it's so common.

Anyone have any tricks or tips on how to reduce or alleviate it?

vmb

Hi.

It's been 6 months after my first Lemtrada infusion, and the balance is pretty bad:

1 relapse in Christmas, one old lesion in the spinal cord was active. I recovered in about one month.

another relapse 1 month ago. It was mild, and I recovered quickly.

Now I am having a big relapse. I've had another MRI and there are 3 new lessions.

I've been told we are going to consider a change, given that Lemtrada is not helping me.

I have no words... I am currentle out of options. Tysabri could be very dangerous with my lymphocite levels and I feel really really sad.

My depression is also a big problem. I am taking the maximum dosage of two different antidepressants, and there is not improvement.

I am also starting with the pain management consultant, because I am also with terrible pains in my lower back. The mri shows degenerative damage of the bone there...

Life is too tough, this is going very very bad and I am not going to have enough patience.

Good luck for all of you

Carrie6OD

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byhookorbycrook

Ah b@lls. What about gilenya ?

raindrop

Hi All!

I basically need some advice, I have heard of people getting a MS nurse and I want to get in contact with one. I understand that all private patients can get an MS nurse at St Vincent's hospital so I am planning to change my hospital and neurologists in the hopes of getting one. Anyone have an insight into this? Thanks in advance.

Carrie6OD

Carrie6OD wrote: »

A reminder regarding the rules of this forum
Boards HQ has expressed serious concerns about offering to exchange private messages where the nature of such messages is that of counseling/support of distressed or vulnerable users. Posters are leaving themselves open to being hurt or involved in a situation they cannot manage. We understand that sending such messages can come from a place of care and concern but doing so can create a lot of stress for you. If you see offers of such PMs or receive a PM attempting to offer off-thread support, please report it.

Apologies. Obviously didn't know that. Just felt sorry for that person

Carrie6OD

raindrop wrote: »

Hi All!

I basically need some advice, I have heard of people getting a MS nurse and I want to get in contact with one. I understand that all private patients can get an MS nurse at St Vincent's hospital so I am planning to change my hospital and neurologists in the hopes of getting one. Anyone have an insight into this? Thanks in advance.

I have been both a private and public patient and have had access to an MS nurse on both occasions. St. Vincent's public hospital have great MS nurses who get back to by email usually within a day or two sometimes same day.

raindrop

Carrie6OD wrote: »

raindrop wrote: »

Hi All!

I basically need some advice, I have heard of people getting a MS nurse and I want to get in contact with one. I understand that all private patients can get an MS nurse at St Vincent's hospital so I am planning to change my hospital and neurologists in the hopes of getting one. Anyone have an insight into this? Thanks in advance.

I have been both a private and public patient and have had access to an MS nurse on both occasions. St. Vincent's public hospital have great MS nurses who get back to by email usually within a day or two sometimes same day.

I am in Beacon hospital since last year and they haven't such a service. I am thinking about St.Vincent in a hope to get a nurse.

byhookorbycrook

We don't have an MS nurse per say in the Bons , there is a Neuro nurse but not specifically an MS nurse . She is kind of a point of contact to take some pressure off the Neuro , she is very well educated on Neuro issues and attends tysabri , sorts things like forms for Fampyra etc but I don't think I'd go so far to say as " all the private patients get an Ms nurse !" in ours anyhow .
What do you think an MS nurse could offer to you that is different to your current set up ?

ETA Sorry , just re-read that , it might read a bit like I'm asking " sure what more do you want?! " - my meaning is I'm not sure an MS nurse does offer what you think they might - what do you think they can offer you " , if that makes sense ??

raindrop

byhookorbycrook wrote: »

We don't have an MS nurse per say in the Bons , there is a Neuro nurse but not specifically an MS nurse . She is kind of a point of contact to take some pressure off the Neuro , she is very well educated on Neuro issues and attends tysabri , sorts things like forms for Fampyra etc but I don't think I'd go so far to say as " all the private patients get an Ms nurse !" in ours anyhow .
What do you think an MS nurse could offer to you that is different to your current set up ?

ETA Sorry , just re-read that , it might read a bit like I'm asking " sure what more do you want?! " - my meaning is I'm not sure an MS nurse does offer what you think they might - what do you think they can offer you " , if that makes sense ??

I found the below on the St.Vincent website:

The predominant role of the MS Nurse Specialist is to support and advise persons diagnosed with MS attending our service. The MS Nurse provides support and advice throughout the disease trajectory from diagnosis onwards.
The MS nurse also provides information and education on treatments available and prescribed for persons diagnosed with MS.
She also provides information on symptom management of MS and the psychological and social impact of MS for those who are diagnosed at all disease stages.
The MS Nurse also liaises with all the multi-disciplines both within the hospital and community in order to ensure continuity of care for MS sufferers.
It is important that persons diagnosed with MS contact the MS Nurse Specialist if they are concerned about new symptoms or have a relapse of their MS.

This is exactly what I am looking forward as currently I don't have ANY access to such a service.

byhookorbycrook

Our nurse couldn't possibly do all that - even though she is exceptionally hardworking , just not enough hours in the day - especially as she isn't specifically MS. Our Neuro is very hands on- she is the one with whom we discuss treatments etc. Though the nurse would be very knowledgable too . I think the service you describe above may because some Neuros wouldn't be in patient contact as often as our lady . Our two ladies work more as a team than either / or

Both our nurse and Neuro are absolutely incredibly hard working . I think there is a different model in ours to what you describe above , I'd be a bit wary that the nurse role above means far less access to the Neuro ( not a slight on our nurse , wouldn't swop her for diamonds )I wonder if anyone attending there could enlighten us?