MS in all its glory

Lollipops23

JenniFurr wrote: »

Hi, I'm newly diagnosed since January. I'm just wondering if anyone here carries a medical alert bracelet or similar? Is there a need for one to state you have MS and what medications you're taking?

I haven't felt the need for one tbh!

JenniFurr

Thanks for the replies guys. I didn't really think many would carry one but I've had some dizzy spells lately and thought if the worst happened, like falling or fainting in public, it would be handy to have something to identify that I have MS. I've heard of people with other LTIs, like diabetes and epilepsy, having them and wondered if people with MS occasionally carried them.

Little My

Hi, newly diagnosed since before Christmas. Just wondering if anyone has recommendations for apps to track symptoms, how I'm feeling etc, like a daily log but something handier? I think keeping a record might help me find triggers but I need something handier than trying to write a diary.

Sunny Dayz

Little My wrote: »

Hi, newly diagnosed since before Christmas. Just wondering if anyone has recommendations for apps to track symptoms, how I'm feeling etc, like a daily log but something handier? I think keeping a record might help me find triggers but I need something handier than trying to write a diary.

My husband is on the medication Gilenya and the supplier of that has an app which I think you can record things like that. He doesn't really use it to be honest, only really for his reminder to take his tablet.

cj maxx

Little My wrote: »

Hi, newly diagnosed since before Christmas. Just wondering if anyone has recommendations for apps to track symptoms, how I'm feeling etc, like a daily log but something handier? I think keeping a record might help me find triggers but I need something handier than trying to write a diary.

look up 'patients like me' and sign up.
might be what your're looking for

embee

I've been in the NRH for seven weeks now, in that time I've managed to achieve my main goal of abandoning the walking stick. Am walking far better than I thought I'd be able to. They're all brilliant in here, and the icing on the cake is that I'm going home for good tomorrow

Blinder

embee wrote: »

I'm going home for good tomorrow

Great news. Bet you can't wait.
7 weeks!! :eek: Did you stay there full time or did you get to go home at all ?

embee

Blinder wrote: »

Great news. Bet you can't wait.
7 weeks!! :eek: Did you stay there full time or did you get to go home at all ?

First four weeks I was full-time but the last three weeks were only Wed Thurs and Fri.I got home every weekend so it wasn't seven weeks in here but it's just that my treatment and therapies were over seven weeks. Still though, can't wait to go home this afternoon.

Blinder

embee wrote: »

First four weeks I was full-time but the last three weeks were only Wed Thurs and Fri.I got home every weekend so it wasn't seven weeks in here but it's just that my treatment and therapies were over seven weeks. Still though, can't wait to go home this afternoon.

A long time to be away from home!! Glad it was worth it and you are back on your feet again

Enjoy your homecoming this afternoon

byhookorbycrook

Delighted for you!

BohToffee

Great news embee.
They really are great out in the NRH just a pity there are no more of those type of rehab centres in the country perhaps then the waiting list may not be so long. But that's really the same with everything.

embee

Thanks folks, delighted to be home for good, am extremely fatigued today but I'm just putting that down to the change in routine. There were people in there from Kerry, Cork, Limerick, Clare, Galway.... There weren't getting home for weekends and I can imagine that is very upsetting. Pretty disgraceful that there's only one rehab facility in the entire country. They do amazing work there and I feel like I'm very lucky have had the chance to go there and improve as much as I did. One nurse told me that there are 750 people on the waiting list. Dunno how I got in so quickly, if I'm honest. I think my neurologist is good friends with the rehabilitation medicine consultant, I can't help wonder if she pulled some strings.

byhookorbycrook

Maybe so, but it's not like you didn't need to be there.

Blinder

Embee,
It is quite possible that you just fitted better the resources they had available at that time, than someone that was longer on the list. Your nuero might have made them aware of your case, which is good, as you just happened to fit in perfectly. No amount of strings would work if it wasn't a good decision , for you and for the hospital. And it was smart decision to get you in and use those resources that were available, help you so you can be discharged and reduce the waiting list by one

littlemissfixit

Hi! Just quick question some of you might have some insight: had a brain and c-spine mri on Sunday, that is in Kerry, public patient, in how long can I expect results and is it the neuro or my GP that will relay those (in case I get to impatient and want to contact them instead of waiting!) Thanks

byhookorbycrook

Presuming you had it in the Bons and you are under the care of Dr. M? Usually ten days or so for me.

littlemissfixit

byhookorbycrook wrote: »

Presuming you had it in the Bons and you are under the care of Dr. M? Usually ten days or so for me.

Thanks! Yes it was in the Bons referred by Dr M. Ten days is not so bad. The worst is probably the CD copy of the scan, it's like holding a result letter that you can't read.
I'm under no illusions that conclusions/diagnosis will definitely be made from this scan, but I'm not keen on surprises, would just like to know exactly what to expect on the delivery of results, give me a small sense of control on the situation, do they phone to tell you results, send you a letter, send you a letter for a consultation appointment to get the findings if any??
Not keen on surprises but quite keen on just getting on with it and figuring out whats next. Feeling quite positive though, must have to do with the fact I am feeling a lot better at the moment.

kieranfitz

I have a question for the group, at least I think it's a question. I'm on a ones using the injector pen and have been since July, diagnosed in May. When I started doing the injections myself I was fine with it but for the last couple of months I've been struggling to punch the button. Not physically because of symptoms or anything, it's more like a mental block or anxiety but I don't know where it came from. I've gone from 2 minutes, job done to taking hours to build myself up to push the button. Has anyone else had this or have any advice? I've been sitting on my bed for like 5 hours at this point tonight trying to do it.

ElleEm

kieranfitz wrote: »

I have a question for the group, at least I think it's a question. I'm on a ones using the injector pen and have been since July, diagnosed in May. When I started doing the injections myself I was fine with it but for the last couple of months I've been struggling to punch the button. Not physically because of symptoms or anything, it's more like a mental block or anxiety but I don't know where it came from. I've gone from 2 minutes, job done to taking hours to build myself up to push the button. Has anyone else had this or have any advice? I've been sitting on my bed for like 5 hours at this point tonight trying to do it.

I went through this. I started to get other people (husband, friends) to inject me if they were around at the time but I still got caught up in it. It is probably not advisable but I actually took a break for a while. I really needed it and didn't tell anyone so I could move through it without any pressure. I started back a few weeks later and had no issues. I just needed to give my mind and body a rest.

byhookorbycrook

Little Miss, I get a letter re my scans, but initial diagnosis was a face to face meeting. Might be an idea to ring the neuro nurse or Dr M's office.

Kieran, my husband used to do mine but if he was away for the weekend I had horsey friends who would be used to injecting animals on stand by if I couldn't press the button.One glass of wine and a text to tell a friend to come over to inject if they didn't get a text to say it was done to call. Nothing like the thought of someone used to injecting a large and often belligerent animal to make me want to press! I did go back to not using the autoject, the noise and feel were worse than having to press the ordinary plunger.

littlemissfixit

thanks byhookorbycrook, I did ring them today they have been very good in the past trying to get things sorted when I rang, but today wasn't the usual secretary and she really couldn't help at all. She took my details though and I'm hoping to get a ring back Monday.
I know something is wrong but lately I am doubtful that its MS but you guys have been great support in the last 8 months, it's such a scary numbing journey, I found great info on here!
"numbing" no pun intended!!!

Lollipops23

I'm in a total bind- my aunt passed away at the weekend. She was based in the UK, so of course that's where her funeral will be. It's scheduled for next Thursday, which is when I have my first out patient check up. There won't be an MRI, as my nurse said some time ago that it would be too soon to see if my meds were working (on them since mid-Nov). She wants to see me Sept/Oct time.

I called the clinic just there to see about rescheduling the appt and he said it could 6-9 months before I get another one.

Of course I want to go the funeral, and don't relish the thought of sitting in a hospital while my entire family are there. Would I be insane to reschedule the appointment? My symptoms haven't visibly worsened in any way. I've no loss of motor function or strength etc.

Sorry for the rambling post, I'm upset and overwhelmed!!!

byhookorbycrook

Oh feck.Sorry to hear about your aunt. If there's no MRI and you are feeling ok, I'd be inclined to go to the funeral- explain it to the nurse and ask if she can consider you for any cancellations, even short notice ones.

Lollipops23

byhookorbycrook wrote: »

Oh feck.Sorry to hear about your aunt. If there's no MRI and you are feeling ok, I'd be inclined to go to the funeral- explain it to the nurse and ask if she can consider you for any cancellations, even short notice ones.

Thanks. I tried to get through to the Dept to cancel and got a VM saying the secretary was away until next Tuesday. Pain in the ass. Left a message explaining the situation, hope I don't go to the bottom of the pile now

embee

I'm leaving for Beaumont shortly. Severe eye pain, facial numbness, fatigue galore and a numb hand. Am effing sick of MS at this stage.

Blinder

embee wrote: »

I'm leaving for Beaumont shortly. Severe eye pain, facial numbness, fatigue galore and a numb hand. Am effing sick of MS at this stage.

Oh no Embee. Are you heading to the A&E or the ms clinic? Hope they sort you out quickly with steroids

Lollipops23

embee wrote: »

I'm leaving for Beaumont shortly. Severe eye pain, facial numbness, fatigue galore and a numb hand. Am effing sick of MS at this stage.

That sounds so frightening. Hope they can help you out and get you feeling better.

Salmotrutta

Just wondering if anyone here has had experience trying to get a mortgage and life insurance after diagnosis? It would be a small mortgage, both of us are working so less risk if the MS stops me working, but just trying to get a feel for whether we have a chance at all before we apply... is a diagnosis a dealbreaker for banks or do they accept clients still in good health and still working?

byhookorbycrook

Might be worth ringing the MS society?

Salmotrutta

byhookorbycrook wrote: »

Might be worth ringing the MS society?

Never thought of that, cheers. Have never had a reason to call them before so didn't even think of it...