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.

Check out Swank diet too, though its mentioned in OMS. I hope your wife likes fish !

Hi folks,

Haven't posted, literally in years, but just wanted to say hi. I have been formally approved under the Treatment Abroad Scheme for HSCT in London. I still have RRMS, but my neurologist has said I have refractory MS and I just don't respond optimally to any of the medications. I've had copaxone, tecfidera, tysabri, lemtrada, and now on ocrevus. They've all failed, I am relapsing every 4 months irrespective of whatever meds I'm on. So, so fed up of MS now, don't even want HSCT but I don't feel like I've got an alternative choice. Am getting ocrevus on November 18th, my third full dose after starting it on May 2020. I've had three relapses since starting ocrevus.... Really wish it'd leave me the hell alone!

I hope you're all keeping well x

Best of luck with it Embee.

Do any other MSers suffer with insomnia. ? Maybe it's nothing to do with MS !

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.

Phoned my GP and got a script for phenergan, which should do the job. I take it to re-set my sleep pattern, then hopefully I'll sleep normal hours.

But insomnia ( brain racing and not being able to fall asleep) has been a longstanding issue for me, Even before my diagnosis , though I had symptoms, (leg tremors, weakness on my right sideand) ever since a child .

I got an appointment very quickly with the neurologist in the Hermitage. I asked to be transferred to St Vincent's public after seeing him. Was given an appointment that was 3 years later. Thought it was a typo… rang up to clarify and it wasn’t!! Stayed with the private guy until an appointment came up in the public hospital. It was only around a 9 month wait. Once you’re in the public system I have found it very good.