MS in all its glory

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?

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 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 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!

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 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.

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 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 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 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 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

Hi guys, I've been experiencing difficulties over the last 2 yrs and was recently told by my Neurologist that he thinks two spots of inflammation (one on my spine,one on my brain) are possible MS. As a follow-up he recommended I have treatment. I'm after a 5 day infusion of Privigen immunoglobulin, just finished on Friday and I'm devoid of any energy and have a headache. Is this normal after the treatment ? The weather probably isn't helping either.

Thanks.

byhookorbycrook wrote:

Has he actually confirmed MS? IVIG is sometimes used for inflammatory conditions and primary immune deficiency. It can certainly cause headaches. If you turn out to actually have MS, you will probably find fatigue an issue and especially during warm weather.

Hey , thanks for the reply. No confirmation as yet, his plan is to try the ivig and see does he make any difference to my life and I guess take it from there. How is MS actually confirmed ? I'm pretty sure he would have explained much of this to me but so much of our conversation went over my head. I was kicking myself that I didn't use the phone as a Dictaphone rather than try to remember all that was said to me on the day. He said I could be very unlucky in that I may have MS and another condition called HSP which my mother and older brother have !!

Oh Jesus yeah I have lots of symptoms, left leg gone very very weak, almost dragging it around, bladder problems, a blur in my left eye and issues with balance to name but a few. I had the MRI done and he said he sees inflammation on that, had a lumber puncture done in January but can't recall had he anything specific to say about that. I'll be better prepared for the next q and a !!