MS in all its glory

tinofapples · 11-02-2019 02:43PM

Nigel Fairservice wrote:

I'm on betmiga as well. I think it's ok...75% of the time.

Same as, some days the bladder just seems to be all over the shop.

byhookorbycrook · 11-02-2019 08:14PM

Nigel Fairservice wrote: »

I'm the same. Most people don't understand how completely overwhelming it can be. It's especially hard to try and hide it at work.

I go to bed for a few hours after work most evenings.

Lollipops23 · 18-02-2019 09:53AM

tinofapples wrote: »

Same as, some days the bladder just seems to be all over the shop.

I'm only recently finding that fully emptying is a lot more difficult than it used to be.

Even this morning I went to the loo, was in the middle of brushing my teeth 5mins later when I realised I still needed to go!!

Nigel Fairservice · 18-02-2019 12:51PM

Lollipops23 wrote: »

I'm only recently finding that fully emptying is a lot more difficult than it used to be.

Even this morning I went to the loo, was in the middle of brushing my teeth 5mins later when I realised I still needed to go!!

I was keeping track of these things before I brought it up with my neurologist (thought I was going mad). One morning I went 8 times in the space of 4 hours. Full bladders as well. Meds have brought it under control for the most part. I have a big problem of relaxing my bladder as well to begin the process, especially in public bathrooms. Don't know if that one is me or the MS :pac:

Nigel Fairservice · 20-02-2019 01:11AM

Does anyone get bad itching? I get very bad itching on my legs after showering. Hot water makes it really bad. No amount of scratching will satisfy it so I try my best not to scratch. Showering with lukewarm water helps, the itching isn't as intense. It's probably linked in with the heat sensitivity. I've been getting it for years, long before I was diagnosed with MS. It was probably the first sign that something was wrong with me had I known what to look out for.

Lollipops23 · 20-02-2019 10:07AM

Nigel Fairservice wrote: »

Does anyone get bad itching? .

In hindsight this was actually one of my first symptoms! I still get it now and again (normally confined to my chest and shoulders).

Lollipops23 · 20-02-2019 10:14AM

Loveinapril wrote: »

I'm 18 weeks pregnant and have been off my meds nearly 6 months.

I thought pregnancy generally put MS into temporary remission? That stuff scares me, the idea of being off my meds long enough to get pregnant and then another 9 + months!

Lollipops23 · 20-02-2019 10:46AM

Loveinapril wrote: »

I am just coming out of that cough/ cold bug going around so hopefully it is just my body fighting that.

I do find that, when I've had a nasty cold my symptoms definitely flare up! I also had a pseudo relapse last year with pins and tingling in my leg (I hadn't had any real issues with my legs before, so it scared me). I had an MRI and was told there was no new activity so it was likely a relapse, but one that didn't cause any new lesions. Could be the case with you?

I'd love to breastfeed, but had always assumed I'd need to get back on meds asap after birth...

Salmotrutta · 20-02-2019 10:57AM

Loveinapril wrote: »

I'm 18 weeks pregnant and have been off my meds nearly 6 months. I am driven mad by pins and needles in my left hand and legs. Usually my symptoms are on my right hand side (foot drop, leg weakness and motor fatigue) so I am not delighted with the new left side stuff. Back in the hospital in May but sure they can't do anything until the baby arrives. It is so disheartening. My symptoms never changed when i was pregnant with my 15 month old.

Loveinapril wrote: »

It is definitely supposed to be better for the MS but I didn't feel any better in my last pregnancy.
I had a small relapse a few months after but going back on meds settled that. I was only on them a few months before we decided to try again and you need to be at least 3 months off them before getting pregnant. I got pregnant the first month of trying so we were really lucky but I would like to breastfeed again. I am worried about how likely that will be if I am symptomatic. I am just coming out of that cough/ cold bug going around so hopefully it is just my body fighting that.

Congrats first of all! We have two under 2 so you've a busy house to look forward to in a few months time

It could well be just a pseudo relapse from the infection. I get new/recurrence of old symptoms occasionally after a bad cold - currently going through the cough/cold thing again and can feel (not really!) my hands are a lot more numb this week. Give it a week or two and hopefully it clears up. The other problem with having kids is you pick up all sorts of bugs from them!

I have so much admiration for women who give up their meds to get pregnant - I know from my wife that pregnancy is hard enough already, I can't imagine the extra stress that must bring, so all I can say is good luck with the pregnancy and hope everything goes perfectly for you.

Nigel Fairservice · 20-02-2019 12:12PM

Lollipops23 wrote: »

In hindsight this was actually one of my first symptoms! I still get it now and again (normally confined to my chest and shoulders).

Definitely the same for me. Had the itching problem for a few years before my diagnosis. There was me thinking the itching was being caused by my shower gel, laundry detergent, something I was eating or a thousand different other things.

embee · 26-02-2019 09:53AM

So, I was hospitalised with another relapse two weeks ago. I'd only just had a relapse in November that required steroids, needed steroids again this time. My neurologist ordered a new mri, I'd had an mri in November and in that three months between November and February I have new lesions. They're likely going to recommend a third round of lemtrada. The only upside was that they decided to remove my thyroid while I was an inpatient... My thyroid was damaged by the lemtrada and went severely overactive and I didn't respond to any medication to suppress the thyroid. Turns out I was producing antibodies which were neutralising the medication I was on for the overactive thyroid, so surgical removal was the only real option left. So I got that out last Wednesday, and am feeling already far better. No mad sweating, no racing heart rate or palpitations, no breathlessness, rapid weight loss has slowed right down.... I'm delighted they took it out as I'd have been on a waiting list for months otherwise. So, round three of lemtrada could be this summer and I'm happy to do it. Any of ye had a third round of lemtrada?

PPN2893 · 14-03-2019 09:03PM

Hi all,

I'm just curious as to what you guys consider an important enough episode to warrant attending A&E?

I was diagnosed several years ago but never had problems apart from two initial episodes of optic neuritis. I've only recently started on 240 mg of Tecfidera twice a day. For some reason my original neurologist never put me on meds because he was under the impression that they were unnecessary since, in his opinion, I may never have another episode. Well, my two biggest toes have been numb for about an hour now. I've tried everything to wake them up but they've gone cold and white like there's no circulation flowing. The rest of my foot and the other foot are fine. I'm starting to think this might be my first official episode since diagnosis and I'm unsure what to do. Do I just see my GP for referral tomorrow? Should I go to the hospital? I was never really given a brief on what to do should I have an attack. I'm fine as far as everything else goes, just ridiculously tired.

What is your guys first port of call in the event of an attack?

Nigel Fairservice · 14-03-2019 09:08PM

PPN2893 wrote: »

Hi all,

I'm just curious as to what you guys consider an important enough episode to warrant attending A&E?

I was diagnosed several years ago but never had problems apart from two initial episodes of optic neuritis. I've only recently started on 240 mg of Tecfidera twice a day. For some reason my original neurologist never put me on meds because he was under the impression that they were unnecessary since, in his opinion, I may never have another episode. Well, my two biggest toes have been numb for about an hour now. I've tried everything to wake them up but they've gone cold and white like there's no circulation flowing. The rest of my foot and the other foot are fine. I'm starting to think this might be my first official episode since diagnosis and I'm unsure what to do. Do I just see my GP for referral tomorrow? Should I go to the hospital? I was never really given a brief on what to do should I have an attack. I'm fine as far as everything else goes, just ridiculously tired.

What is your guys first port of call in the event of an attack?

Give your MS nurse a call and talk it through with them. I couldn't feel my small finger one of my hands for a few weeks. Called my nurse and we talked it through. We both felt hospitalisation wasn't necessary because it wasn't really impairing me. The feeling eventually came back.

byhookorbycrook · 14-03-2019 09:14PM

I'd wait for 2/3 days - sometimes we have blips that don't last more than a few days.

PPN2893 · 14-03-2019 09:15PM

Nigel Fairservice wrote: »

Give your MS nurse a call. I couldn't feel my small finger for a few weeks. Called my nurse and we talked it through. We both felt hospitalisation wasn't necessary. The feeling eventually came back.

Thanks. I don't have an MS nurse. I've been kinda left in dark regards to the whole MS diagnosis. I rarely see a neurologist. I've probably had three appointments max in the last 5 years. I didn't feel like this was bad enough to warrant A&E but I just wanted to be sure. When I first had optic neuritis, they were very firm that I should have gone straight away but I left in for days because I hate hospitals. I'll try to get to see my GP tomorrow as I thankfully have the day off and can wait for ages for a call-in appointment.

PPN2893 · 14-03-2019 09:18PM

byhookorbycrook wrote: »

I'd wait for 2/3 days - sometimes we have blips that don't last more than a few days.

Cool, I might end up doing that. I'll see in the morning if it's gotten better or worse. That leg with the numb toes has been feeling weird lately and I have been extra tired lately. I'm hoping it's just because I've been stressed lately and not that my stress has exacerbated an attack. Thanks guys. Will give it some time and hope for the best.

Nigel Fairservice · 14-03-2019 09:23PM

PPN2893 wrote: »

Thanks. I don't have an MS nurse. I've been kinda left in dark regards to the whole MS diagnosis. I rarely see a neurologist. I've probably had three appointments max in the last 5 years. I didn't feel like this was bad enough to warrant A&E but I just wanted to be sure. When I first had optic neuritis, they were very firm that I should have gone straight away but I left in for days because I hate hospitals. I'll try to get to see my GP tomorrow as I thankfully have the day off and can wait for ages for a call-in appointment.

Call the neurology department of the hospital where you see your neurologist. Ask for the contact details of the MS nurse or ask that the nurse contacts you. It's a valuable number to have in your phone. I haven't contacted my MS nurse too often but she has always been very helpful.

PPN2893 · 14-03-2019 09:36PM

Nigel Fairservice wrote: »

Call the neurology department of the hospital where you see your neurologist. Ask for the contact details of the MS nurse or ask that the nurse contacts you. It's a valuable number to have in your phone. I haven't contacted my MS nurse too often but she has always been very helpful.

I'll do that. I'm going to try to contact the last neurologist I saw as she was more helpful. The senior consultant I was diagnosed by told me that MS nurses weren't common place when I asked about it. Kinda seemed like he thought I was faking it because I had a clean MRI, even though my LP came back positive.

Nigel Fairservice · 14-03-2019 09:48PM

PPN2893 wrote: »

I'll do that. I'm going to try to contact the last neurologist I saw as she was more helpful. The senior consultant I was diagnosed by told me that MS nurses weren't common place when I asked about it. Kinda seemed like he thought I was faking it because I had a clean MRI, even though my LP came back positive.

I was the other way around, positive MRI and negative lumbar puncture.

I think there's 2 MS nurses in CUH where I am. There's probably not a lot of MS nurses in the country but they still should have put you in contact with one. I met my MS nurse about 10 minutes after being diagnosed. She was brought into the room and we were introduced and she gave me her phone number. Try and get the contact details for the nurse attached to your hospital. They'll be your first port of call for anything MS related you think might be serious.

PPN2893 · 14-03-2019 10:36PM

Nigel Fairservice wrote: »

I was the other way around, positive MRI and negative lumbar puncture.

I think there's 2 MS nurses in CUH where I am. There's probably not a lot of MS nurses in the country but they still should have put you in contact with one. I met my MS nurse about 10 minutes after being diagnosed. She was brought into the room and we were introduced and she gave me her phone number. Try and get the contact details for the nurse attached to your hospital. They'll be your first port of call for anything MS related you think might be serious.

I'm going to try and get in contact with them in the morning, even if I can just leave a message, because I know weekends + Paddy's Day will be a nightmare for hospital staff. I reckon they must have at least one nurse that deals with MS there. I live in Waterford, which doesn't have the largest hospital, but they surely must have someone there as it services most of the South East. I don't know though. I've talked to the Biogen nurses about my Tecfidera more in the past month than anyone in the neurology department since diagnosis!

byhookorbycrook · 16-03-2019 07:57PM

Neurolgy in the south east is a disaster. Which is why I drive to Kerry each month.

tinofapples · 15-04-2019 11:38AM

I'm starting my rituximab treatment today, hope it goes well without complications :-)

Update:
After less than an hour I started feeling itchy round the back of my ears and eventually most of my head. I made nurse aware of this and she could see rash developing over my head and down my neck and back, they decided to stop the Rituximab and gave me Piriton iv to reduce the reaction. After a "cooling" off period we resumed slowly and completed the course without any other hiccups :-) Hopefully some good will come from it.

eimsRV · 05-05-2019 09:07PM

Hi all,

I started experiencing issues on Thursday, balance problems, weakness, diffficulty coordinating my limbs. I rang the ms nurse who said she’d call me back on Tuesday to see if symptoms persisted and then get me to clinic on Wednesday. As it happens my annual mri is Thursday.
My symptoms have worsened and I feel like it’s a relapse, I need to use a stick to get around. My own gp is away until Wednesday. Would you go to a&e or hold out to see neurologist on Wednesday?

PPN2893 · 05-05-2019 09:19PM

eimsRV wrote: »

Hi all,

I started experiencing issues on Thursday, balance problems, weakness, diffficulty coordinating my limbs. I rang the ms nurse who said she’d call me back on Tuesday to see if symptoms persisted and then get me to clinic on Wednesday. As it happens my annual mri is Thursday.
My symptoms have worsened and I feel like it’s a relapse, I need to use a stick to get around. My own gp is away until Wednesday. Would you go to a&e or hold out to see neurologist on Wednesday?

Do you have an emergency/out of hours doctor nearby? You can find a list at the bottom of this webpage: https://www.hse.ie/eng/services/list/3/outofhours/gpooh.html

I'd personally advise to contact them before going to A&E. They may be able to provide more help with answers as to what to do. Weekends are particularly slow in A&E and you could be saving yourself a lot of trouble waiting around for possibly being sent home. I think with having an appointment so close that it might be better to wait before going to the hospital unless you are having symptoms much more severe than you have experienced in the past.

eimsRV · 05-05-2019 09:31PM

Thanks ppn. Yes I’ll call the out of hours doctor now.
The symptoms are similar to what I experienced about 4 years ago. I’ve been relatively fine since then. I can’t bare the thought of sitting in a&e for 24 hours but also worried about delaying possible treatment.

PPN2893 · 05-05-2019 09:40PM

eimsRV wrote: »

Thanks ppn. Yes I’ll call the out of hours doctor now.
The symptoms are similar to what I experienced about 4 years ago. I’ve been relatively fine since then. I can’t bare the thought of sitting in a&e for 24 hours but also worried about delaying possible treatment.

It's understandable to want to get treatment asap. From my own experience of visiting A&E, treatment didn't come quick. It really depends on the neurology team and the facilities at your nearest hospital. It's a mixed bag all over the country.

Nigel Fairservice · 05-05-2019 09:43PM

Last time I was went to A & E I was waiting 12 hours to be seen. It's a bank holiday weekend as well so that may add to waiting times. I'd be inclined to wait until the MS nurse calls you back on Tuesday.

byhookorbycrook · 07-05-2019 09:45PM

How are you doing, eimsRV?

eimsRV · 08-05-2019 10:41PM

byhookorbycrook wrote: »

How are you doing, eimsRV?

Thanks for asking byhookorbycrook.

I saw the registrar in Beaumont today. He feels I'm having a relapse but wants to rule out infection so had bloods and urine test done with results due tomorrow along with MRI. Expected to start steroids on Friday. Struggling trying to explain my absence to my new manager who is in America and not much knowledge of MS. I said I'll be out for at least this week and next and he was shocked. I was trying to explain its very unpredictable but its difficult to really get it across.

I'm off driving and not able to walk unaided or even pick up my 1 year old - but hopefully will feel better once I start on the steroids.

adam88 · 08-05-2019 11:00PM

Hi all. Just been reading the last few pages of this. 30 lad here. Diagnosed last June with 3 week history of optic neuritis and pins and needles on my left leg with balance as good as gone. Thought it was a tumour and attended eye clinic in cork university hospital, was admitted through the medical assessment unit and told that evening I more than likely had MS. I was thankful I got a diagnosis so fast as I’ve heard horror stories of people waiting years to be diagnosed. I was started on Gilenya and 4000 units of vit D. Also my folic acid, b12 and iron are always low.
I’ve been doing good since my diagnosis. Have have one or two balance issues a day but never fall. Bladder is acting up a little bit in that I feel as if I’ve a very full bladder but then when I go, the flow isn’t great and the amount I pass isn’t that large either.
All in all I suppose I’m okay with it all. I’m back working full time which included shift and night work. Always tired but I plan around it.
Great to find this page and hear of other people’s journeys.

MS in all its glory

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