MS in all its glory

Hi everyone, hope it's ok for me to post here. Last week my wife was told by a neurologist that she may have MS. This was entirely unexpected by both of us and we're both just floored and devastated. No confirmed diagnosis yet but the neurologist said that his suspicion is strong. I'm posting because I'm just terrified and don't know what to do, we're in this limbo now while tests etc are done and it's awful. I'm scared for my wife's health, I'm scared for our future, I've no idea what to expect in terms of prognosis because I'm too afraid to look it up. I'm a ball of worry and stress and trying to put on a brave face for her sake but she can see through it. I can't eat or sleep with anxiety. She is surprisingly calm, collected and positive (relatively) about it all, but I am not so resilient. She doesn't want anyone to know until we know what's going on so I have nobody to really talk to about it and I feel like I'm going to crack up.

FWIW issues started 10 years ago with an unexplained bout of pins and needles that lasted a few weeks. At the time it was checked but stress related peripheral neuropathy was suspected. Then nothing for 8 years except she started getting migraine, first it was rare but became more frequent over time, to the point it became almost a daily thing. Since the pins and needles then she has had 2 what he called 'key events', both of which were separate but occurred in the past 2 years where she had what he thinks was Lhermitte's sign for a bit and then she experienced complete numbness from the waist down for 2 weeks but she didn't lose mobility. There are no residual symptoms now and no other symptoms were ever manifest like bladder/sight/mobility/balance/coordination issues. The only reason she was referred to a neurologist by the GP was was because of the persistent migraine leading to brain MRI and then to the neurologist. Even the neurologist suspected migraine based on the brain MRI until he asked about her history which led to his suspicion.

I'm not sure what I expect to get from this post, or why I'm unloading here, but thank you for reading. I wish you all well in managing your own illness.

George Jelinek's book "Overcoming MS" is a positive read and scientifically sound. https://overcomingms.org/resources/overcoming-multiple-sclerosis-book

Thank you both, I will get that OMS book immediately. The first suggestion from the neurologist was to start taking magnesium, vitamin D, and vitamin B2. Her migraines have completely abated since, just hoping it isn't a coincidence, but she hasn't gone a week without a migraine in a long time. She's a big believer in natural/lifestyle approach to wellbeing in general, so the OMS program will be her first port of call I have no doubt.

Was talking to my MS nurse there. Apparently they sent a list of immunocompromised patients to HSE a few weeks ago for referral for the booster, but still no sign of being called. I'm on Gilenya, which she mentioned is one of the DMTs that results in lowest antibody response to the vaccine, so I'd imagine my immunity has fairly waned by now (6 months since second jab). She thinks they are calling people by age, regardless of any underlying conditions.

I suffer from Insomnia - not all the time mind (have done on and off for many years) - don't ask me the medical terminology but my GP, in simple language advised me there is a difference between not being able to sleep and waking in the middle of the night and then not being able to get back to sleep - in my case I have little issue getting asleep but if I am stressed / worried / anxious etc tend to wake at 2 or 3 am with my mind racing (and cant get back asleep) - this is different from not being able to sleep at all.

In my case I went through a particularly "rough" patch, at the same time I was dealing with a flare-up earlier this year - I had a lot going on as well, dealing with a family bereavement (Covid related which made it all the more difficult, as I couldn't even say "good-bye" which got to me), and other covid related scares in the house, (nobody's fault; one of my kids is a frontline worker, and really sensible / careful, but was just unlucky), and I was told I was going to lose my job so I kind of imploded at the time. At the time I was prescribed medication for anxiety and these "knocked me out", but my GP was quite firm that these were not a long-term solution. That being said they I took them for about a month and they helped me regularise my sleeping pattern, and to get some rest / recovery. Thankfully things are much better now and generally I am sleeping fairly well (and hadn't taken these meds for over two months) - that said I had discussed the matter with my GP so after a week of poor sleep I took them for two nights last week but thankfully things have settled, and while still have about half a dozen tabs left, which with my GP's knowledge, I keep in the bed-side locker, "just in case" - in a silly way knowing they are there helps me not get over-anxious about it - probably sounds mad I know.

Suggest this is best discussed with you Dr, and that you consider the above, i.e. is it falling asleep that is problematic at or waking up in the middle of the night. Good look, I feel for you.

I've never been in the public system, saw a private neuro from the start (had good insurance, ophthalmologist who diagnosed optic neuritits recommended him, and I also knew his secretary so could get a quick appointment). Didn't want to be waiting months or years for a public appointment. He has rooms in a private hospital, where I see him. I've also had various courses of IV steroids there for relapses, and I deal mostly with the nurse in the IV unit.

I've been pretty happy, although I haven't seen him in a few years as my MRIs have been stable, I know he is checking those and blood results whenever I need a new prescription. Anytime I had a relapse or concerning symptoms I was able to get an appointment, but he doesn't insist on seeing me every year (and charging!) just for a 5 minute physical exam when my condition is stable, so I feel more like a patient and less like an ATM. MRIs are done at the same hospital and I generally get referred on time for those.

Basically, if you have good health insurance that will cover some of the cost, I would have no problem going private. My insurance covers MRI, any IV treatment I need and a large part of consultant fees so its a no-brainer for me.

Hi,

I see my Neurologist privately, and have done since I had my first (very) noticeable symptoms in early 2015. (In hindsight I think now that some of my symptoms were present well before that but I ignored them / didn't understand etc. but that's a different debate).

When seeking heath care privately there is a cost involved but like Salmotrutta my PHI covers a lot / the bulk of it.

Initially the insurers weren't quite as generous but I changed / upgraded my cover a few years ago to reduce the excess and to improve the rebate etc. There was a waiting period before I could avail of the extra benefits (2 years if I recall correctly) as my MS was a "pre-existing condition". As it happens the waiting period wasn't an issue as my MS was stable so I had little reason to seek help. (I may therefore be mistaken about the time frame for the waiting period). This year however was different, as I had quite a severe flare-up in the early part of the summer on foot of which which I have had 4 consultant consultations, a mixture of face to and Zoom, a similar number of MRIs, two visits to hospital, at least 8 GP visits, and I think 3 or 4 blood tests all in a relatively short time frame. The PHI company paid the bulk of these (all of the MRIs and hospital visits were 100% covered) and there is more stuff in the diary (hopefully not as much, as things have settled) but the net result is that the PHI company paid out a fair wedge of money this year, well in excess of what I paid in premiums for at least the last two years.

For me the massive benefit of going private is my Neurologist (or at least his secretary) will invariably call me within 24 hours of my reaching out and when deemed necessary an MRI was scheduled and carried within 48 hours, with at least a follow up call within hours of the results, (even after hours / over the weekend) and thereafter on two occasions a face to face / physical exam "tomorrow / later this week", even at the current time (covid etc). I'm a worrier so to me that is priceless.

On the negative side I don't have access to a nurse which from what I hear is very useful to many.

I can't compare to the public system as you ask, as admittedly I have no experience of it, but hear anecdotally of family and friends who are the public system and from what I hear it can be slow, unless you are very ill, especially at the current time, for obvious reasons.

As I said, my experience of the public system is non existentant so open to challenge re my assumptions, and I know I am privileged in that I have access to good PHI but for me it's worth the sacrifice elsewhere if only to stop the worrying / allow me move things quickly when I feel I need to / am worried about something.

On reading your post it seems like the Radiology department genuinely haven't got your referral. All my referrals for MRi etc come via my Neuro and are via the clinic he operates from so that might help expedite matters here? FWIW my initial referral from my GP to the Neuro was "urgent" but the GP who I know for nearly 30 years said she was referring me to this guy as she rates him / has only ever had positive experience working with / referring patients to him.

@ PPN2893 Hope this helps.

Got booster on Firday afternoon ( pfizer) , was bit weary as wasn't great after 2nd Moderna in June ! No side effects this time around - bit of a sore arm but nothing compared to June !

I was in the same boat until last week. No call from HSE. My GP had a clinic last week for groups 4 and 7 and I got an appointment, this week they sent a text to say they are having a clinic next week for all patients, no age restriction. I would give your GP a call, or local pharmacies. The govt are ramping up the vaccination programme and asking GPs to do a lot more jabs, so you may get an appointment that way easier.

On another note, has anyone been switched to the generic drug instead of Gilenya? I picked up my prescription yesterday and they mentioned about switching next month. I said I'd check with my consultant, but with the State paying for it I'm surprised to even be asked. Presumably there is no difference except on price?