MS in all its glory

Kazzam88

vmb wrote: »

I had lemtrada in sept 16.

My neuro gives me blood and urine forms, and I am having blood tests in hospital (St Vincents) every month. The ms lab nurse checks my levels every month and tells me if something is not ok.

Ask your ms nurse, they should be able to give you forms so you don't have to pay.

To be monitored is super important, the prevalence of some diseases after lemtrada higher than expected. ie, at the beginning they though that thyroid problems were present in about 30% of patients, and now is known that this number is moving towards 50%.

Furthermore, those problems could appear years after the last lemtrada drip.

Great thanks so much. I'm with Beaumont and I did ask my neurologist at the time if I could get them checked at the hospital but she wasn't very keen. I"m due to go back in for a second dose of Lemtrada in February so will talk to the MS nurse then.

Oh wow I didn't know that fact! I do get my checked every month regardless of the 30e charge.

ash23

I had Lemtrada and pay for the bloods each month. I have a medical card but still have to pay.
The nearest hospital is over half an hour away so by the time I'd get there and pay for parking, it's much of a muchness.

If you're closer to your hospital you should be able to get them done there for free.

vmb

About urine tests, instead of paying every month, you could buy urine strips and check it at home.

My ms nurse told me it's ok for the regular urine tests.

For the CAST urine test though, I have to go to hospital/GP. Urine strips tests do not check CAST.

This is what I know, it is not medical advise, do not stop your urine regular tests without asking your ms nurse or neurologist before.

Carrie6OD

sugarman wrote: »

Anyone here have a local anesthetic with MS? Reading mixed information it can cause some hassle with flare ups / relapses ...among other things.

Personally I have had both local and general anaesthetic since diagnosis. Have had no issues after either. I have PPMS.

Loveinapril

eimsRV wrote: »

Congrats Loveinapril! Sorry to hear you are relapsing.
I'm scheduled for a section in 3 weeks. I came off my medication when I found out I was pregnant. Was in with nuerologist 2 weeks ago, she recommends I only breastfeed for max 12 weeks and then go back on meds. I'm going to start harvesting colostrum from this week as I'll be 36 weeks.

Best of luck this week x

I am reluctantly weaning the baby off the breast this week. I am due back in the MS clinic on Monday and am going to ask to go back on meds. Hoping they offer me the oral meds as I was on Copaxone for 7 years and would love to not have to inject. When I had the nerve pain before I was put on Lyrica so I am just going to take everything on offer to get me through the slump!

eimsRV

Loveinapril wrote: »

Best of luck this week x

I am reluctantly weaning the baby off the breast this week. I am due back in the MS clinic on Monday and am going to ask to go back on meds. Hoping they offer me the oral meds as I was on Copaxone for 7 years and would love to not have to inject. When I had the nerve pain before I was put on Lyrica so I am just going to take everything on offer to get me through the slump!

Thank you loveinapril! I'm scheduled for section Monday, will go in Sunday evening so hopefully will have baby early enough on Monday morning.
I was most recently on Plegridy which is an injection every 2 weeks, I must look up more about the oral one.

Best of luck for Monday too, hope you got stocked up and back to normal soon xx

byhookorbycrook

Can I suggest you look at some of the more effective meds?The thinking now is to hit MS hard with something like Tysabri or Lemtrada early on. I was injecting for a few years and the damage done may eventually come back to bite me. I wish I could have had Tysabri sooner.

Lollipops23

I've been lucky enough that my symptoms have always been low level, with some sensation loss in my right hand. It's been particularly bad the last few day; I've been dropping stuff even more than I usually do!

I am not particularly run down or stressed, haven't been ill of late...not sure if it's something I should be contacting my MS nurse?

byhookorbycrook

If it persists for more than a few days, it is no harm to ring.

LegacyUser

Lollipops23 wrote: »

I've been battling a particularly nasty bout of tonsillitis this week- antibiotics and all.

My question is- has anyone found their symptoms get worse when they're ill? This is the first time I've been properly ill since diagnosis and I've found my numbness is worse and there's a small bit of pain in my hand to go with it.

Yes, defo worse when any illness.

vmb

Hi all!

Finally I finished the whole bone stem cell treatment and I'm back at home here in Dublin.

The second stage has been very tough, one month in an isolation room. I got an infection before starting the chemo (caused by the first stage chemo). After the chemo I had more, during the phase when you DON'T have immune system at all.

Now it does not matter, it's done and the transplant has been successful. It's very scaring when you have infections and no neutrophils/lymphocytes, but you are under constant supervision.

Now I hope to have more luck than with previous treatments , because I can promise you it's is 100000 times more aggressive than Lemtrada.

Lollipops23

vmb wrote: »

Hi all!

Finally I finished the whole bone stem cell treatment and I'm back at home here in Dublin.

Congratulations on completing the treatment!!

Crossing everything for you! (Lol jk, like I can still cross my fingers.....!)

vmb

Lollipops23 wrote: »

Congratulations on completing the treatment!!

Crossing everything for you! (Lol jk, like I can still cross my fingers.....!)

Thanks! I've read about your recent problems with your hand. I had at least 4 or 5 relapses affecting my hands (fingers), some of them very serious, like not being able to move my fingers at all, and eventually, as we use our hands all the time, you recover very well.

In my case, yesterday I played my guitar for first time since I had my first relapse (hands...), almost 4 years ago. It has been very emotive to me to feel that I still can do it. I have to relearn, but I was able to play some chords :pac:

Lollipops23

vmb wrote: »

In my case, yesterday I played my guitar for first time since I had my first relapse (hands...), almost 4 years ago. It has been very emotive to me to feel that I still can do it. I have to relearn, but I was able to play some chords :pac:

Oh wow that must have been very emotional!! Delighted for you, will be listening out for updates on your improvements!

Blinder

vmb wrote: »

In my case, yesterday I played my guitar for first time since I had my first relapse (hands...), almost 4 years ago. It has been very emotive to me to feel that I still can do it. I have to relearn, but I was able to play some chords :pac:

Wow. Can only imagine how that made you feel.

Wishing you continued improvement and that this is the treatment that will be completely successful for you

vmb

Hi Sugarman.

I think there are two different aspects to consider. Tingling/numbness/spams are yellow flags. Pain tho can be caused because your fingers are not working properly and you are forcing them. Are they weaker?

I'd contact your MS nurse if you need more advise. I think playing guitar is great for rehab, but maybe your level is too high and you need to slow down until you recover properly. If things don't get worse, I wouldn't consider to receive steroids or being admitted.

In my case I'm relearning the chords, I mean, I learnt to play guitar just 2 years before I had to stopped it, so I'm not exactly like jimmy page....

Good luck, hopefully your hand will recover in just a few days

ash23

Sugarman, contact your GP and they'll get onto your neurologist.

If your symptoms are worse then you might be relapsing. No sense in waiting until you're seen. You might be able to get steroids to reduce the inflammation and prevent any permanent damage.

vmb

ash23 wrote: »

Sugarman, contact your GP and they'll get onto your neurologist.

If your symptoms are worse then you might be relapsing. No sense in waiting until you're seen. You might be able to get steroids to reduce the inflammation and prevent any permanent damage.

Regarding steroids, they only accelerate the recovery process. They do not reduce the final damage done. When you are feeling a relapse, the physical damage is already done. There is a small delay between the inflammation and what we feel as relapse as far I know.

Once the inflammation disappears, symptoms go away, sometimes the recovery is complete, sometimes is not. When it is not, the brain needs to regenerate new circuits to avoid the damaged connections. That is called neuroplasticity.

Salmotrutta

sugarman wrote: »

Even tho i've experienced somewhat new symptoms over the last while, ive had 3 or 4 scans over that period with no change so they saw no reason to start me on any treatment. The neurologist said he believes it'll try repair itself over time, worse case scenario it'll stay the same but shoudnt get any worse.

Would it be normal to experience new symptoms without any new lesions?

Yes. Google smouldering MS. I've had relapses with little clinical sign on MRI. Many neurologists now regard early intervention and early treatment as essential. Perhaps worth getting a second opinion from a neuro who has a different outlook to your current one.

mamakitten

Hi all , I'm just wondering has anyone experienced or heard of unilateral sudden onset hearing loss due to MS? As far as I can google it seems to be a relatively unusual one and I'm wondering what's the general treatment and outcome? Thanks !

Lollipops23

This past week I’ve started getting tiny electric-type jolts in my right foot. Thought I was imagining it at first but defo noticeable, and now there’s minor tingling happening (just that foot).

Not sure what to do about it tbh, I haven’t had any relapses since my diagnoses.

Salmotrutta

Lollipops23 wrote: »

This past week I’ve started getting tiny electric-type jolts in my right foot. Thought I was imagining it at first but defo noticeable, and now there’s minor tingling happening (just that foot).

Not sure what to do about it tbh, I haven’t had any relapses since my diagnoses.

Any new sypmtoms or flare-ups of existing symptoms lasting longer than 24 hours could be a relapse - worth calling your MS nurse. Have you had an infection lately? Sometimes a virus or UTI etc can cause an exacerbation but it usually resolves by itself.

Lollipops23

Salmotrutta wrote: »

Have you had an infection lately? Sometimes a virus or UTI etc can cause an exacerbation but it usually resolves by itself.

I’ve had a nasty cold over the last week actually, maybe that’s causing it!

Salmotrutta

Lollipops23 wrote: »

I’ve had a nasty cold over the last week actually, maybe that’s causing it!

That could be it alright. I get worse symptoms when I have a cold. Also get those foot jolts when I'm very tired - telling me it's time to go to bed!

Lollipops23

I've had weakness in my right leg over the last 3 days; rang the hospital to try and speak to my clinical nurse specialist this morning. They paged her and got no response. I eventually got through to one of the doctors in neurology, who agreed that it was smart to ring in and he would get her ring me.

That was at 10am and I haven't heard a peep; rang again and she's still not answering her page.

I'm due in tomo for bloods...should I just swing in to the department and hope someone is around to assuage my fears?

byhookorbycrook

Yes to swinging round. And be firm about being seen. We are pretty expert in the issue of MS, unfortunately and if you are worried, you need to speak with someone.

Lollipops23

Ok, so I dropped in and was told (super rudely) by the receptionist in the Neurology clinic that it "wasn't a drop in place". I was upset and asked that they remind the nurse that I'd dropped in.

Thankfully she called me about an hour later and agreed that we should have a look into it. She was going to send a letter to the Mater Private and that I should ring today to arrange the scan.

I called and they don't have the letter yet, but they also told me there was a 4 week wait :O

Surely 4 weeks if I am experiencing a relapse is outrageous and until damage could be done in that time without treatment??

discobeaker

Lollipops23 wrote: »

Ok, so I dropped in and was told (super rudely) by the receptionist in the Neurology clinic that it "wasn't a drop in place". I was upset and asked that they remind the nurse that I'd dropped in.

Thankfully she called me about an hour later and agreed that we should have a look into it. She was going to send a letter to the Mater Private and that I should ring today to arrange the scan.

I called and they don't have the letter yet, but they also told me there was a 4 week wait :O

Surely 4 weeks if I am experiencing a relapse is outrageous and until damage could be done in that time without treatment??

I'm in the Mater Hospital too,but in the Mater public, I think you might be waiting awhile for an appointment. I had my yearly appoint back in January, a week before the appointment I got a letter saying all appointments had been cancelled due to a consultant leaving the practice and it would be rescheduled. Nearly 5 months later I'm still waiting

Lollipops23

discobeaker wrote: »

I'm in the Mater Hospital too,but in the Mater public,

I'm fortunate enough that I have really great health insurance, hence the nurse referring me to the Mater Private. The public system is a joke.

discobeaker

Lollipops23 wrote: »

I'm fortunate enough that I have really great health insurance, hence the nurse referring me to the Mater Private. The public system is a joke.

I wanted to go private but started off in the Mater public with optic neuritis but when I was diagnosed i was told not to be changing from public to private by some of the staff as it was "frowned upon" and you can get lost in the system by moving! I hope you have better luck than I've been having in the Mater as of late