MS in all its glory

Martina1991

Hello all,

My father has primary progressive MS for about 22 years now. Over the last few months he's been in and out of hospital with high blood pressure. Both the GP and doctors in hospital have been playing around with various medications and dosage but he is still having incidences of both high and low blood pressure which results in him back in hospital. He also appears to be having recurrent infections (they think UTI) that he cannot seem to clear.

He's on so much medication and lately he's also been very depressed and not engaging in conversation, as well as lack of appetite.
Has anyone here also been treated for depression and if so has medication improved your situation? It's so frustrating and heartbreaking not only to see him physically disabled but also to see the person he is be effected as well.

tinofapples

Martina1991 wrote: »

Hello all,

My father has primary progressive MS for about 22 years now. Over the last few months he's been in and out of hospital with high blood pressure. Both the GP and doctors in hospital have been playing around with various medications and dosage but he is still having incidences of both high and low blood pressure which results in him back in hospital. He also appears to be having recurrent infections (they think UTI) that he cannot seem to clear.

He's on so much medication and lately he's also been very depressed and not engaging in conversation, as well as lack of appetite.
Has anyone here also been treated for depression and if so has medication improved your situation? It's so frustrating and heartbreaking not only to see him physically disabled but also to see the person he is be effected as well.

Sorry to hear about your Dad, it can't be easy for him or you seeing him this way. I'm a newbie in this forum so can't offer much other than good will

I really hope things improve.

Nigel Fairservice

Does anyone experience very bad fatigue while reading? I know everyone gets a bit drowsy while reading, especially at night, but this is extreme tiredness, tiredness I wouldn't feel when I'm just normally tired. I can only get a handful of pages into a book and I'm gone. Time of the day doesn't matter. Early morning after a good sleep or evening time after work, it happens. Probably haven't explained it very well :pac:

byhookorbycrook

Nigel Fairservice wrote: »

Does anyone experience very bad fatigue while reading? I know everyone gets a bit drowsy while reading, especially at night, but this is extreme tiredness, tiredness I wouldn't feel when I'm just normally tired. I can only get a handful of pages into a book and I'm gone. Time of the day doesn't matter. Early morning after a good sleep or evening time after work, it happens. Probably haven't explained it very well :pac:

MS fatigue is incredible . So much so, that I want to slap people who tell me they know how I feel as they get tired too!

Nigel Fairservice

byhookorbycrook wrote: »

MS fatigue is incredible . So much so, that I want to slap people who tell me they know how I feel as they get tired too!

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.

tinofapples

My consultant prescribed Amadatine to me two weeks ago for fatigue, haven't seen any great difference apart from sleeping very poorly at night the last 5/6 nights. Have any of you had similar experience with it? I'm considering dropping it but will most likely give it at least another couple of days.

Nigel Fairservice

tinofapples wrote: »

My consultant prescribed Amadatine to me two weeks ago for fatigue, haven't seen any great difference apart from sleeping very poorly at night the last 5/6 nights. Have any of you had similar experience with it? I'm considering dropping it but will most likely give it at least another couple of days.

I'm not on anything for fatigue. My neurologist never even mentioned it to me that there were medications available for it when I spoke to her about it. I had insomnia for a few years from my late teens to my mid 20s. Hard to imagine there was a time I had trouble sleeping now! I'm on another medication for a MS related problem (bladder). Sometimes I think it's great and some days I think it's useless. Stick with the medication for a while longer to get better picture of effectiveness over time. Good to know there's something out there for it though. Now if we had a magic pill for heat sensitivity!

tinofapples

Nigel Fairservice wrote:

I'm not on anything for fatigue. My neurologist never even mentioned it to me that there were medications available for it when I spoke to her about it. I had insomnia for a few years from my late teens to my mid 20s. Hard to imagine there was a time I had trouble sleeping now! I'm on another medication for a MS related problem (bladder). Sometimes I think it's great and some days I think it's useless. Stick with the medication for a while longer to get better picture of effectiveness over time. Good to know there's something out there for it though. Now if we had a magic pill for heat sensitivity!

I'm on betmiga for the bladder issues as well as Laxido for bowel.

Nigel Fairservice

tinofapples wrote: »

I'm on betmiga for the bladder issues as well as Laxido for bowel.

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

tinofapples

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

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

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

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

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

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).

Loveinapril

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.

Lollipops23

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!

Loveinapril

Lollipops23 wrote: »

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!

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.

Lollipops23

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

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.

Loveinapril

Lollipops23 wrote: »

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...

I hope it is just the illness causing the struggle. I told my MS nurse that I intend to breastfeed for at least 8 weeks so she is scheduling an MRI for about 10 weeks after the baby is born. Then I will be booked in to discuss medication. With my son, I didn't discuss anything with them as I had intended to breastfeed for a year but I started to relapse so they scheduled an MRI and I weaned him off the boob, giving my last feed on the morning of my hospital appointment where I got my prescription.
I think each person is different regarding the speed in going back on meds. Breastfeeding was so important to me that I didn't really engage in conversation about not doing it. My symptoms are frustrating and definitely impact my life in terms of not being able to walk for long/ struggling with stairs etc. but they are not debilitating enough for them to rush me back on medication. The fact that I am already struggling makes me think this pregnancy may be different. .. I will have to prepare myself for them telling me that going back on medication may be a priority.

Nigel Fairservice

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

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

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

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

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

PPN2893

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

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

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

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.