MS in all its glory

Knocknarea

Hope you guys don't mind but need a rant. I had an appointment with my neurologist this morning, it was a last minute cancellation but I made arrangements to be there. Anyhow it's a clinic so waiting around is common place. So after an hour and half I was seen by one of the "team" a registrar, he hadn't read my file and didn't know I had had a relapse in late July, he asked what happened and I told him optic neuritis and a numb foot. He asked me how I was now and I said my eyesight was still affected. He said "oh well lets leave that to the eye people" . He didn't examine me at all and was about to send me on my way when I told him I was having a lot of headaches, he didn't ask me anything about them and just said to up the amount of Lycria I was taking. And that was that. Six minutes in total ! I felt so low leaving and very alone. I keep thinking is this my fault? Am I too passive, I had questions to ask but I was so thrown by his blasé attitude that I just accepted it and left. I really don't know what to do now? Feeling like no one gives a ****e. It will be six months before I am seen again.
Thanks for reading

ash23

Knocknarea wrote: »

Hope you guys don't mind but need a rant. I had an appointment with my neurologist this morning, it was a last minute cancellation but I made arrangements to be there. Anyhow it's a clinic so waiting around is common place. So after an hour and half I was seen by one of the "team" a registrar, he hadn't read my file and didn't know I had had a relapse in late July, he asked what happened and I told him optic neuritis and a numb foot. He asked me how I was now and I said my eyesight was still affected. He said "oh well lets leave that to the eye people" . He didn't examine me at all and was about to send me on my way when I told him I was having a lot of headaches, he didn't ask me anything about them and just said to up the amount of Lycria I was taking. And that was that. Six minutes in total ! I felt so low leaving and very alone. I keep thinking is this my fault? Am I too passive, I had questions to ask but I was so thrown by his blasé attitude that I just accepted it and left. I really don't know what to do now? Feeling like no one gives a ****e. It will be six months before I am seen again.
Thanks for reading

That doesn't sound right at all. I'm pretty new to this and have only had a couple of appointments and one review appointment so far. I was seen by a registrar who did a full (albeit a bit rushed) neuro exam and took down all my details re: symptoms. It was then referred to the consultant who came to see me (after a lengthy wait) to discuss my new symptoms and options.....

Have you an MS nurse or someone you can contact to follow up on this?

byhookorbycrook

That's awful.

StarsSky

Hi guys, so glad I've found this thread, spent the whole weekend reading through every post in the thread following your stories here... I'm newly diagnosed going through an array of emotions from being overwhelmed, sad, lost...

I've been told everybodys case is different but I'm hoping to hear a few positive stories, so my main question is how is everybody today, are you relapse free or are you currently experiencing symptoms and what are the symptoms your feeling today? Also how long has it been since your last relapse?

Also, my second follow up MRI showed an active lesion, what does this mean and when I start on a disease modifying drug will I expect to see this lesion change or become 'deactive'?

ash23

StarsSky wrote: »

Hi guys, so glad I've found this thread, spent the whole weekend reading through every post in the thread following your stories here... I'm newly diagnosed going through an array of emotions from being overwhelmed, sad, lost...

I've been told everybodys case is different but I'm hoping to hear a few positive stories, so my main question is how is everybody today, are you relapse free or are you currently experiencing symptoms and what are the symptoms your feeling today? Also how long has it been since your last relapse?

Also, my second follow up MRI showed an active lesion, what does this mean and when I start on a disease modifying drug will I expect to see this lesion change or become 'deactive'?

Hiya, today I feel great. Vision in one eye is still a bit blurry but prob 90% back to normal. Numb limbs are loads better. Working full time, socialising, exercising and trying to eat healthily but failing in spectacular style!

I had a follow up MRI this morning but am expecting to change dmds soon once I get back to the consultant.
Not sure about the second half of your question to be honest. But hopefully someone here will be able to help.

fungie

StarsSky wrote: »

Hi guys, so glad I've found this thread, spent the whole weekend reading through every post in the thread following your stories here... I'm newly diagnosed going through an array of emotions from being overwhelmed, sad, lost...

I've been told everybodys case is different but I'm hoping to hear a few positive stories, so my main question is how is everybody today, are you relapse free or are you currently experiencing symptoms and what are the symptoms your feeling today? Also how long has it been since your last relapse?

Also, my second follow up MRI showed an active lesion, what does this mean and when I start on a disease modifying drug will I expect to see this lesion change or become 'deactive'?

While I haven't been technically been diagnosed yet its probably just a matter of time. I had a MRI today and will hear the results in a few weeks. Ive been fine for the last few months since my initial episode, I'm back at college and doing lots of exercise. Im doing some runamuck thing in a few weeks, its a 5km run/hike through mud and water etc. Going on a holiday in a few days and looking forward to it, life goes on. I was initially down but now I just get on with it. It gets easier!

outnumbered82

I have been diagnosed 2 and a bit years. Was just thinking the other that it's taken this long to be fine about it, not saying I have been upset all the time but now and for the past few months it hasn't been weighing on my mind.

I have not full relapsed at all but have had a lot of little ones like headaches, eye pain and numbness but nothing bad.

Once everything is going ok with meds and yourself it will be ok. The old saying time is a great healer is true. Looking back now if someone said I'd feel normal again back then I wouldn't of believed them but it's true. I'm working more I changed direction of my job and it's going great, going out more and have a gym routine I do.

Fingers crossed it will stay that way for as long as possible :-)

byhookorbycrook

StarsSky wrote: »

Hi guys, so glad I've found this thread, spent the whole weekend reading through every post in the thread following your stories here... I'm newly diagnosed going through an array of emotions from being overwhelmed, sad, lost...

I've been told everybodys case is different but I'm hoping to hear a few positive stories, so my main question is how is everybody today, are you relapse free or are you currently experiencing symptoms and what are the symptoms your feeling today? Also how long has it been since your last relapse?

Also, my second follow up MRI showed an active lesion, what does this mean and when I start on a disease modifying drug will I expect to see this lesion change or become 'deactive'?

Diagnosed 2001, still working full time and haven't relapsed since 2009 (when I started on tyabri) If you want to pm me, feel free .

I get tired more easily than I used to ,so life needs to be managed more carefully.

Have you talked to your neuro about the DMDs? It is generally thought that the sooner you do, the better. It's also thought that MS is linked to Vit D, so I take Vit D, B and omega oils.

ash23

Have to get more blood tests done but not sure what for this time. Last ones were for JC virus and to test for immunity to chicken pox in case I start on Tysabri or Gilenya respectively.

I've already had the initial bloods done for Lupus, Syphilis and all the other things they ruled out pre-diagnosis last year. The MS nurse said these have to be done in the hospital because they are being sent to the UK. Any ideas? I never thought to ask her what they are testing for this time and now I'm worrying that it's something like Devics disease that they're testing for

byhookorbycrook

How long ago did you have the JC test, Ash?

ash23

byhookorbycrook wrote: »

How long ago did you have the JC test, Ash?

Less than 8 weeks ago.

byhookorbycrook

Did you get the results? We have blood taken in the hospital each month at Tysabri.

ash23

byhookorbycrook wrote: »

Did you get the results? We have blood taken in the hospital each month at Tysabri.

No I've not been back to the consultant yet. Just had the MRi last week and due back for those results, plus the results of the initial bloods. Now I've to have more bloods. I'll know tomorrow what they are for. I'm just worried that they are testing for Devics disease. My MRi last year showed very little brain involvement (one tiny lesion that the radiographer missed) but I have spinal lesions and have had numerous bouts of optic neuritis.

Never thought I'd see the day I'd be hoping for brain lesions or hoping it is MS :rolleyes:

byhookorbycrook

I have spinal lesions in the main but Devics was never mentioned. I thought it was a form of MS ?

MS.ing

byhookorbycrook wrote: »

I wonder if we could bring our own cds?!?

yes I have been asked if I had anybefore after I requested they change the radio station, which they did so that was good enough for me

ash23

Hi all, just an update. Was back yesterday and have 3 new lesions on my brain. Boo.

On the positive side, it means I don't have Devic's disease as now the brain is involved. Yay.

I'm changing from Copaxone to Gilenya after a lengthy discussion with the consultant. I'm also JCV negative so could feasibly go on Tysabri but am going to try Gilenya first.

byhookorbycrook

Ash, would you not try Tysabri first, it is more effective than Gillenya?

ElleEm

How are you all getting your Neurologists to entertain the idea of changing meds? I have been on Copaxone almost three years (went on it weeks after diagnosis). I relapsed pretty hard for the first year, and asked to change meds when my ON left me wearing an eyepatch. She said no. I have suffered with footdrop enough to need a splint for the past year. In August, I asked about moving onto Gilenya or ANYTHING different, but again was told "no, we will just keep doing what we are doing".
I am with Prof. Hardiman in Beaumont Hospital.

ash23

I chatted at length with my consultant about gilenya vs tysabri and we both agreed on gilenya for the time being. He felt tysabri for me at the moment would be like trying to hammer in a nail with a wrecking ball. My ms isn't too bad and I'm quite healthy presently so gilenya seemed like the sensible choice for now.


Elle when I saw thw registrar at my 6 month checkup I said I wasn't sure if copaxone waa working for me as I'd been on itsix months and had nothing but minor relapse after minor relapse. She said she thought I was on the best treatment for me but she ran it past the consultant and he agreed that it wasn't keeping it at bay so arranged the mri and bloods with a view to changing my meds. That all took a couple of months and then I went back and we went through the results and discussed my options.

I seem to be very lucky with my neuro. I've seen him at every visit and he listens to what I say and is very proactive.
It was pure luck I got him but I thank my lucky stars I did.

byhookorbycrook

ElleEm wrote: »

How are you all getting your Neurologists to entertain the idea of changing meds? I have been on Copaxone almost three years (went on it weeks after diagnosis). I relapsed pretty hard for the first year, and asked to change meds when my ON left me wearing an eyepatch. She said no. I have suffered with footdrop enough to need a splint for the past year. In August, I asked about moving onto Gilenya or ANYTHING different, but again was told "no, we will just keep doing what we are doing".
I am with Prof. Hardiman in Beaumont Hospital.

How are you now, relapse-wise?

outnumbered82

Do anyone get migraine? Last few weeks been getting really bad headaches every now and then especially after taking my meds is this normal?

byhookorbycrook

Yes, it seems, according to some FB pages. What meds are you on?

fergal.b

I'm not sure if any of you have suffered with such a thing as an MS hug where you wake up feeling like your ribs have been crushed, my wife has had this for a few months now and has tried all types of painkillers and muscle relaxers with no affect then a few weeks ago she was put on LDN "Low Dose Naltrexone" and so far so good it has taken away most of the pain and she feels it is a wonder drug so I Just thought I'd let you know incase any of you are going through the same thing.

Keep strong and never give up.





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byhookorbycrook

Yeah, have the MS hug quite a lot. Glad to hear your wife has had some relief.

outnumbered82

I had a pain under one rib felt like I was being stung and pulled at, rang the neuro who didn't seem to think it was anything, I think it was the hug

I'm taking 44 of Rebif. Did that dose for 2 months then went down to 22 now back on 44 past 6 months now getting headaches chills and nausea

byhookorbycrook

Do you take paracetemol a few hours before the Rebif?

outnumbered82

Yea I do, this morning no side effects but Thursday and Tuesday were bad so it's not all the time

byhookorbycrook

I have to say that I don't miss the injecting and flu!

byhookorbycrook

How are all the MS-ers finding this damp cold? Legs really stiff and sore in this weather with me.

discobeaker

byhookorbycrook wrote: »

How are all the MS-ers finding this damp cold? Legs really stiff and sore in this weather with me.

I find my legs are very stiff in the cold weather. My apartment wouldn't be the warmest either so the cold is a killer but I do yoga and I find it helps to heat me up and keep the blood flowing