MS in all its glory

AilsOD

kieranfitz wrote: »

Hey guys, just got diagnosed on Tuesday after nearly 2 weeks in hospital, still trying to get my head around things.

Take your time with it Kieran, there's no hard and fast rules as to how to get your head around it or how long it should take. I'm diagnosed two and a half years and I'm not sure I've my head around it!

AilsOD

sqooka wrote: »

Hi all, I'm switching off copaxone to gilenya shortly and was hoping that anyone who's been on gilenya can tell me how they've found it? Looking forward to not injecting on the one hand, but I'm dreading any tiredness or flu-ishness.

I'm on Gilenya a year and a half now, I love it, I feel like it's given me my life back. I've never had any side effects, a bit of a reduction in the fatigue (it's still there but manageable) I've also had no relapses since being on it.

byhookorbycrook

Ah feck, Kieran, I hate to see our little group growing Plenty advice and understanding to be had here.

Agenda

Hi, can anyone recommend a Ms neurologist in Dublin with a good bedside manner. My current one was great at the diagnosis stage, but impossible to talk to. Won't let me talk, shouts me down and basically has a god complex. I am not a difficult patient have been with my go for 30 years and never had a cross word.

I had my appt. with my nuero yesterday and it was so awful that I am already dreading the next one in September.

Thanks,

Paddy James

sqooka wrote: »

Hi all, I'm switching off copaxone to gilenya shortly and was hoping that anyone who's been on gilenya can tell me how they've found it? Looking forward to not injecting on the one hand, but I'm dreading any tiredness or flu-ishness.

I am on it since 2012 not a problem with it for me

Paddy James

Agenda wrote: »

Hi, can anyone recommend a Ms neurologist in Dublin with a good bedside manner. My current one was great at the diagnosis stage, but impossible to talk to. Won't let me talk, shouts me down and basically has a god complex. I am not a difficult patient have been with my go for 30 years and never had a cross word.

I had my appt. with my nuero yesterday and it was so awful that I am already dreading the next one in September.

Thanks,

Ann

Did you try Ryan Tubridys brother ?

Paddy James

Salmotrutta wrote: »

I've been on it for about 8 months now, no problems, zero side effects and my last MRI in Feb showed no new lesions and reduced size of existing lesions. Just had another MRI this week but haven't got results yet, hopefully all good. Just have to remember your immune system will be less effective so get to your GP if you get flu/cold symptoms and get on antibiotics asap.

I have had the opposite reaction. Have not gotten a flu in the past 3 years on it

byhookorbycrook

Paddy James wrote: »

Did you try Ryan Tubridys brother ?

Have heard varying reports...

Salmotrutta

Paddy James wrote: »

I have had the opposite reaction. Have not gotten a flu in the past 3 years on it

I was told I probably wouldn't get any more infections, but if I did my immune system would be slower to react and fight it, so they could be more severe, therefore to get antibiotics. I was also advised to get the flu vaccine, which I did. I probably average 2 colds a year anyway, that's what I've had since I went on Gilenya, but the first one was definitely more severe than I'd be used to. Second one I did get antibiotics and got over it very quickly. The fact you haven't gotten a flu in 3 years may have nothing to do with Gilenya, just that you haven't been exposed to any that you weren't already immune to.

Paddy James

Salmotrutta wrote: »

I was told I probably wouldn't get any more infections, but if I did my immune system would be slower to react and fight it, so they could be more severe, therefore to get antibiotics. I was also advised to get the flu vaccine, which I did. I probably average 2 colds a year anyway, that's what I've had since I went on Gilenya, but the first one was definitely more severe than I'd be used to. Second one I did get antibiotics and got over it very quickly. The fact you haven't gotten a flu in 3 years may have nothing to do with Gilenya, just that you haven't been exposed to any that you weren't already immune to.

Could be true but have 3 kids under 4 years and I can tell you between them and my wife I have spent a lot of time at the GP with them and also the younger lady ended up in hospital for 2 nights with a severe flu.
Actually I ran out of tablets a few times and I actually then get flu like symptoms but as soon as I take just one again symptoms go.

But as we know we are all different

Agenda

Ryan Tubridy brother is who I attend at the moment.

ash23

Salmotrutta wrote: »

I was told I probably wouldn't get any more infections, but if I did my immune system would be slower to react and fight it, so they could be more severe, therefore to get antibiotics. I was also advised to get the flu vaccine, which I did. I probably average 2 colds a year anyway, that's what I've had since I went on Gilenya, but the first one was definitely more severe than I'd be used to. Second one I did get antibiotics and got over it very quickly. The fact you haven't gotten a flu in 3 years may have nothing to do with Gilenya, just that you haven't been exposed to any that you weren't already immune to.

I was told the same. I don't get colds but since being on Gilenya (2.5 years now) I've had one horrendous chest infection and a good few UTIs. I get on antibiotics as soon as I can because if I leave the UTI (made that mistake once) it developed quickly into a kidney infection.

I get the flu jab every year so haven't had flu since I was diagnosed.

Anon2013

Hi,
Sorry not sure if this is the right place to post, I was just wondering if anyone could give advice as to if I should go and see a doctor, my hands and arms shake sometime when I am using them. I also occasionally get twitching in my eyes and headaches. Now I have had loads of MRIs on the brain but my last one was four years ago. Two months I had an MRI on my spine and I also had my eyes checked, these all came back fine. Do you think it is worth visiting the doctor, I have been very stressed lately about other things. Surely if something was there they would have seen it doing the scans?
Thanks

ash23

No harm going to the doctor again. Before I was diagnosed I had a lower back MRI and a brain MRI which were both clear.

My lesions were in my cervical spine so hadn't shown up on the other MRIs. By the time I was diagnosed I had a small tiny lesion on my brain but it was barely visible. Three years later and I have a good few new brain lesions.

That's not to say that your symptoms are caused by MS but at the same time, don't just ignore them either.
They should be following up to see if there's anything else causing your symptoms.

Anon2013

Thanks ash23,
I suffer from serve anxiety and stress and my blood pressure does often be high as a results. That's what the doctor put the shaking and headaches down to as I have had to anxiety for 9 years and the shakes and headaches for 9. I'll go and see GP again I just don't want her to think I am a hypochondriac.

bread

I was diagnosed in early February with what the consultant called 'active' MS. I'm 33 and MS was a complete shock I had been ill in December and at that time I had numbness in my legs and fatigue. Double vision quickly followed.

The consultant put me on a week of steroids. I have since started getting Tysabri infusions and am due to get number 3 this week. I have a couple of questions that I'm hoping to get help with.

1. My walking is still all over the place. If I can make 1 km at all I have issues with foot drop, dragging and general coordination and balance. Does this get better at all? Are there things that ye would recommend to help improve walking (like physio, swimming, pilates etc)?

2. I have private health insurance but I'm wondering if I would be better off switching to public so that I can access a physio, nurse and anything else?

3. I got my GP to fill in the long term illness form but she wasn't quite sure what to put on it as medication. In the end she just filled it in and left the medication section blank. Are there any items that I should have on it like vitamin D?

Sorry for the long post and any help is welcome.

ash23

Hi Bread,

I'm sorry to hear of your diagnosis. I was diagnosed almost 3 years ago a couple of months after I turned 30.

I'll try to answer your questions based on my own experience but MS is very very individual to each person so take evrything you read with a pinch of salt.

1. My walking is still all over the place. If I can make 1 km at all I have issues with foot drop, dragging and general coordination and balance. Does this get better at all? Are there things that ye would recommend to help improve walking (like physio, swimming, pilates etc)?

It varies as far as I know. For me, some of my symptoms went away completely and others have never gone. The neuro said that generally speaking if the symptoms are still there after a year to 18 months, it's probably permanant. So there's loads of time to see improvement yet. Even the lasting damage I have isn't as bad as it was initially and some days it's almost not noticeable at all. I haven't done anything in particular but I have heard that gentle exercise is great for MS. I can walk quite well so usually go for a walk for a couple of miles. I've also read that yoga and pilates is great for MS patients.


2. I have private health insurance but I'm wondering if I would be better off switching to public so that I can access a physio, nurse and anything else?

My neurologist advised me to go public. But I do use my medical insurance for MRIs to speed up the waiting time. Work pay for my medical insurance so if I wasn't able to work, I couldn't afford it. Therefore it made sense for me to be on the public system in case I lose my insurance in the future.


3. I got my GP to fill in the long term illness form but she wasn't quite sure what to put on it as medication. In the end she just filled it in and left the medication section blank. Are there any items that I should have on it like vitamin D?

I have my Vitamin D on my LTI book aswell as my Gilenya. And I was on anti anxiety meds for a bit after diagnosis so they are on it too but I don't collect them anymore.

bread

Thanks Ash. That's a great help. I'm in the same situation re work paying for my insurance. I think I will switch to public after my next visit to the consultant and MRI.

Fingers crossed my walking improves. I have noticed being tired brings on bad walking and balance.

byhookorbycrook

Bread, have you taken Fampyra? I would be cautious dropping health insurance, for instance in some areas the access to drugs like Tysabri is limited if you are on public.

bread

No I have not taken Fampyra. It looks great, I'll have to look into it. The consultant told me that the hospital were funding my Tysabri. I am due to go back to visit him in July maybe I'm best to ask him.

byhookorbycrook

Famyra is not available except by paying for it privately, unfortunately. Even with LTI/Medical Card or even DPS, you can't claim anything back. It costs me €280 per month and a trip to Dublin, but I know some places are quoting up to €500!!! (Hence my trip to Dublin!)

I think there is still a month of a free trial, worth asking the neuro.

jlm29

bread wrote: »

Thanks Ash. That's a great help. I'm in the same situation re work paying for my insurance. I think I will switch to public after my next visit to the consultant and MRI.

Fingers crossed my walking improves. I have noticed being tired brings on bad walking and balance.

You should be able to access Physio publicly, whether a public or private patient. In some areas, you wouldn't even be asked, and in others, you will be told the public Physio service only provides treatment for medical card holders. In general it's actually medical card/long term illness book holders, but you might have to do a bit of quizzing!

kieranfitz

Got my first appointment with the neuro since my diagnosis in the morning. Should probably tell him which treatment I want to use, if only I knew myself.

byhookorbycrook

How did it go?

kieranfitz

Briefly. In, quick chat, throw a dart to pick a treatment, leave. Be nice now if there was some sort of movement on my medical card application. You'd think having a longterm illness and no income apart from the third level grant might speed the process up but it seems not.

JohnMearsheimer

Hi all,

I had to cancel my neurologist appointment last week. The appointment fell during a week I had my holidays booked. I only had 2 weeks notice of the appointment. If I had known my appointment was going to fall the same week as my holidays I wouldn't have booked it.

I haven't seen my neurologist for 9 months. Will I have to wait another 9 months now?

Salmotrutta

ash23 wrote: »

It's a great idea kkelly, however it's be worth getting the neuros opinion as to which clinic to attend. My first MRI was in the Galway clinic and my neuro said he prefers them to be done in Merlin Park or University Hospital as the quality of the MRIs are so much better.
He mentioned the same again when I was going for my last MRI and mentioned that my health insurance covered me in the Galway clinic but he said no point as he wants one from one of the better imaging centres.
I actually contacted my insurer to get them to make an exception on the policy to allow MRIs from Merlin Park and GUH for this reason.

So no harm checking with the neuro as to where the better imaging centres are. When you're looking for tiny changes or tiny lesions, quality probably makes a big difference.

Just to follow up on this, the clinic has a new MRI machine that is much better apparently. My latest MRI images were much clearer than any I'd seen before. Presumably if it's new it would be similar standard to what your neuro requires, in case the clinic is handier for you. Personally I find it great for getting appointments without too much waiting.

eimsRV

kieranfitz wrote: »

Briefly. In, quick chat, throw a dart to pick a treatment, leave. Be nice now if there was some sort of movement on my medical card application. You'd think having a longterm illness and no income apart from the third level grant might speed the process up but it seems not.

Kieran have you applied for the long term illness card? It's not means tested and covers all MS related medication available from hse. Mine only took a few weeks to be processed

JenniFurr

I apologise if I've picked the wrong forum to post this as I wasn't sure if the Accessibility, Mobility & Disability forum may have been more suitable.

I'm looking for advice from those who have MS or are familiar with the illness.

I was admitted to hospital for tests last week because I had lost some vision in my left eye. After a few tests from an opthamologist over several days they determined it was optic neuritis. They called a neurologist for a consultation and I was told this could be MS. I was initially admitted to hospital because it would mean I could get scans done more quickly. After a week the opthamologist discharged me after no tests for MS were done. Neurology told me I needed an MRI and a lumbar puncture and seemed a bit more suspicious of MS after taking my history of symptoms: forgetfullnes, fatigue, twitching muscles, recent bowel and bladder problems, loss of patellar reflex in left knee, optic neuritis, random pain in limbs... I could go on!

I'm looking for advice and experience on getting diagnosed. I felt like I was dismissed without any real thought. The opthamologist that discharged me said he 99% sure it was not MS. That's not really comforting to me and I don't think it's really his field of expertise? Neurology seemed a bit more on the fence and said a lumbar puncture was warranted. Any people with MS have similar experiences with doctors? Should I go back and be a bit more forceful about confirming or ruling out MS? I'm left stressing over possible symptoms. I don't know whether my constant eye and leg muscle twitching are a symptom of MS or stress! I feel like a right hypochondriac

Salmotrutta

Hi Jenni
There is a big thread on MS on this forum already, you may get lots of info there.
My first symptom was optic neuritis, and I wasn't diagnosed for a year afterwards - they had to wait til I had a second relapse and more lesions on my MRI before they could make a diagnosis. Definitely the neurologist is most important here, the ophthalmologist cannot rule MS in or out. If you have private health insurance you can get an MRI scan much quicker - if not you may be waiting a while, but definitely follow up and ask for the scan to be scheduled. A lumbar puncture may not be necessary - I never had one, but that is up to your neuro.
Don't feel like a hypochondriac, and don't allow anyone to make you feel like that. Many MS symptoms are so difficult to describe to others that they cannot understand what people with MS are going through. Stand up for your rights as a patient - you know your own body best, you know what is an abnormal sensation, tell the doctors that and tell them you need a diagnosis, and not to be fobbed off.
Good luck with it!
Salmo