Anyone with MS want to chat

[Tuesday40]

Hi I’ve recently been diagnosed with MS and wondered if anyone wanted to chat? It’s still a bit raw so don’t feel able to talk about it to people face to face.

I’ve not started treatment yet and feeling worried about what the future holds. Be great to chat to people a little further along than me, or equally hand hold with people going through the same thing.

@Tuesday40
Yes, second set of steroids today and another 4 to go. :)

@phoenixwings
Yes, I have loads of strange sensations to. Running water down my leg, sandpaper, burning, coldness, nerve pain (painkillers are helping with this one) and blocks of wood attached to my soles of my feet.

It is so weird.

@Worrysaboutalot how you coping with the steroids? Hope you aren’t getting too many side effects? The joys of nerve damage eh? No two days are the same for the feeling in your legs/feet! Are you taking anything for nerve pain?

Tuesday40,

Just taking 6 x Gabapentin and 2 x Amitriptyline for nerve pain. I get some breakthrough pain at times but I don't want to increase doses, if I can put up with it.

The steroids make wired, unable to sleep properly on day I have them and a little the day after. Terrible taste in my mouth, I use bamboo cutlery to reduce that. Some mood swings but not too bad really

@worrysaboutalot it is very weird. I am waiting to be given medication to try and alleviate them but not sure what that will be. This was two weeks ago when I spoke to the MS Nurse and she said she was writing to my GP about it. When I was first diagnosed Neurologist said they were ones to sort medication for any symptom so confused on that score 🤷‍♀️

@Tuesday40 Oh, the flushing is an issue for me too. I don't remember it being as bad as to when I was on it previously but sometimes it feels as if I'm being burnt alive from the inside. Quite painful. The advice I was given was to take an allergy tablet half hour afterwards to try and prevent the side effect from happening. It's hit and miss as to whether it works though.

As for the redness I am always quite red in the face without the flushing 😂.

How are we all doing today? Fatigue is still as bad as ever along with the buzzing/fizzing in my feet. DD didn't sleep so well last night and she has been very lively up until now.

phoenixwings GP's can prescribe the same medication that their neurologist can I think.

Certainly my GP prescribed Amitriptyline and Gabapentin for me.
My neurologist ordered a course of iv steroids for me and may order other medications in the future I don't know.

Could anyone tell me more about the diagnosis & treatment journey with MS? Last October I started with an awfully painful eye & blurred vision, I was treated for chronic dry eyes & sent on my way. Not long after my feet started burning & gradually went numb, I'm now numb from mid thigh down, numb fingertips as well, my balance is awful, I walk holding on to the furniture at home & use crutches outside. I've had two appointments with a consultant neurologist & he has ordered me an MRI & nerve conduction studies. He thinks it is an inflammatory condition in my nervous system, I asked him if it is likely to be MS & he said that his examination made him think so, I have weak or absent reflexes in my legs & feet, very little strength & coordination in my legs, chronic pain & fatigue that was diagnosed as Fibromyalgia & ME/CFS. I know what MS is as my ex husband was diagnosed during our marriage & is now in a wheelchair, but I would be interested to know what treatment you are all on & how fast did you get treatment after diagnosis?

@Nat6999 it’s a worrying time I know,

I was initially dx with Transverse Myelitis, after experiencing complete numbness which spread from under bra line to pubic bone, I also had numb fingertips, difficulty walking, numb thighs etc.

My family have been in a private health scheme for many years, so I was lucky to see an excellent Neurologist within a week, I had MRI of Head, Cervical & Whole Spine, 3 days later and saw Neurologist again for followup 2 days later.

I was also concerned about MS as I had googled my symptoms. Whilst the Neurologist dx me with TM at that time he thought it was a first presentation of MS, and immediately referred my to my local MS nurse Specialist. I took high dose steroids to bring down the inflammation in my spinal cord, and got on with life. I am married & had two young DS’ at the time.

In less that two years I had a relapse of visual symptoms that came on really suddenly, and lasted a few days, double vision, couldn’t stand up, awful vertigo. By the Monday everything was fine again, I couldn’t face going to see Neurologist, as we were about to go on holiday, when I returned I had a letter from MS Nurse asking to see me, when she visited I explained the recent symptoms she said see Neurologist it sounds like a relapse. Saw Neurologist, had MRI, a further lesion was found and RRMS was dx officially.

I choose Rebif as my first DMD, injectable drug, 3 times a week, gave me some skin problems & didn’t control the disease well enough for me. Unfortunately at that time the only options were injectable. From the time of choosing the drug with the help of my Neurologist & MS nurse, they arranged a visit from the drug from to help me do the injections, really easy the machine called Rebismart does it for you, so you don’t see a needle. This took about 3 weeks or so.

As Tecfidera (my current) DMD was awaiting approval, I have been on Tec
for 4-5 years, tablet twice a day, and MRI haven’t shown any change, yay! I did experience side effects with the Tecfidera initially, but they are much better now, flushing, nausea etc.

They are many more MS drugs available now So options have increased, should you be dx with RRMS, usually they start with frontline drugs ie injectable, unless your MS is very active, I would recommend Tecfidera as it convenient, one tablet morning & night, and had had a good effect of controlling MS for me as proved by MRI.

Good luck I hope you feel a bit better soon. Try not to panic would be my advice, not everyone with MS is in a wheelchair. You can still live a good life, with the right adjustments.

Wishing you all the very best.

Hi @Nat6999

I had a unconventional diagnosis in that I was sent to a and e with numbness in my legs and feet and basically kept in for a week and left a week later with a MS diagnosis. Total shock for me as I hadn’t had any symptoms prior to this. I think I had another relapse within a couple of weeks of leaving hospital and had a course of steroids which quickly helped. I had to wait a couple of months for a MDT meeting and have now been on Tecfidera like @Roselilly36. I also find it really easy to take and the only side effect I get is occasional flushing.

After my relapse after I got home from hospital I was convinced I would be walking with a cane or in a chair as my mobility was so poor for a while. Anyway I am pleased to say that I am now healthier than I have been since I was a teenager. I take my meds, exercise and eat healthy foods and so far it works for me. I try to focus on the here and now and it’s probably not recommended but I try not to think of my MS at all. I tend to drift into googling the worst when I think about it and also no one knows what the future holds, I might get run over by a bus next week so I don’t dwell on what the ms might do to me.

Medication for MS has come on so much in the last 10 years that whilst there isn’t yet a cure, it’s not the diagnosis that it once was.

Take care and wishing you all the best.

@Tuesday40 that's a great attitude, positive thinking helps me too

My ex husband had rebif, we could mark on the calendar when expected relapses were due every 14 months, he had a big relapse that put him in hospital for 6 weeks that needed plasma exchanges to sort it. After we split up he was put on Alemtuzamab which led to a massive relapse that put him in hospital for 10 months & in a wheelchair, needing carers 4 times a day. It's that what terrifies me the most, I know that everyone's experience is different.

I know it’s easy to say but it really is such a different experience for each person with MS, must be hard for you with that first hand experience though

Do most of you have iv steroids for relapses or tablets? Which are the fastest acting with the least side effects?

I've had both. I can't say they made any difference at all. But I found the worst thing about the oral steroids was actually taking the tablets. They tasted so vile I really struggled with them. And I never ever have an issue take if tablets.

Hi I only noticed this thread for m.s.
I was diagnosed in 2003 and it was a huge shock
I got double vision driving home from work one night.
Of course I thought it was a brain tumour as it was still there the next day.
But I was tested fairly quickly and started on rebif44 which worked great for 10years until it wore out of my system
I then went onto copaxone but got sick of that and the marks on my skin.
I now take Gilenya for the past 6 years and my yearly m.r.i show no new lesions.
Even though in 2003 my m.r.i. showed up as multiple lesions 😒
Anyway if anyone new has any questions please ask

Hi everyone can I just ask has anyone here diagnosed with ms even though they have a clear lumber puncture and spine scan? I have inflammation on brain and a lot of awful symptoms but these tests were clear so neurologist does not know what it is

@Princesslucky1

Hi everyone can I just ask has anyone here diagnosed with ms even though they have a clear lumber puncture and spine scan? I have inflammation on brain and a lot of awful symptoms but these tests were clear so neurologist does not know what it is

@Princesslucky1

There are unfortunately many neurological conditions, other than MS.
I had a clear brain and spine MRI scans but diagnosed by a specialised neurologist (I know you have brain inflammation) with a rare neurological condition.

I would recommend asking for a second opinion at whichever hospital has specialists in your area.

My first referral to a local hospital's neurologist was a 10 minute appointment where he checked my reflexes and told me I could avoid falling over and down stairs by "being more careful and wearing walking boots"

I went home and got my walking boots on and carried on falling over and dropping things, over the next couple of years!

I got a lot worse this year losing the majority of my mobility during lockdown and now use a powerchair outside the house. Luckily I WAS referred a second time, to a specialist neurologist at a larger hospital, who instantly knew after reading my file and ordering a nerve test what was wrong and how to halt its progress (no cure so this was the best outcome). I was lucky he could diagnose me, as it is extremely rare
But I read the MS threads, as they are the closest thing to what I am going though...kinda.

Any how long story short, if your neurologist does not know what to do at this point, you need a second referral to someone more experienced than them.

Don't make the mistake I made and wander home after the first neurologist who had not got a clue that anything was wrong. If I had insisted on a second referral straight away, I would probably be still walking today.

Hopefully things will get resolved for you, one way or another. The not knowing is the worse.

Thanks for reply. I rang neurologist and has doubled my meds. I’m still in a lot of intermittent pain. My chin and lips keep going numb and lots of other stuff happening some days I find it hard to walk legs feel heavy.
Neurologist said another scan in 6 months to see if any progression I guess. And to stay on the tabs until then. I’ve been assured by other doctors and nurses this neurologist is one of the best snd he takes no chances. I’m not even sure how I’d get a 2nd opinion tbh.. it’s a really awful time in my life every day is so unpredictable

Hi @Princesslucky1 did you have a mri of your brain and do you know if they used contrast on your spine? In my limited understanding of MRI only active lesions will show unless contrast is used to show previous inflammations. What tablets are you on? So hard to be left in limbo- even in the current climate 6 months seems a long time to leave you without a clear diagnosis.

Hi Stellashere yes I had both mri but no contrast. I was having strange episodes so I ended up going to A+E so they did brain scan. They told me there was inflammation on my brain with some activity and admitted me straight away. Then did spine scan which was clear and lumber puncture which was clear.
Neurologist came around abs did some neurological tests and said I’m grand he will do another in 6 months. He put me on gabapentin and I was on amtripalene anyways as I’ve had nerve pain for the last 18 months.
Whatever this is it’s getting worse I’m really struggling with everyday life and in pain on and off all day. Finding it hard to look after my children and do basic tasks. I actually don’t know where to turn my gp is useless.

@Princesslucky1 Have you had a nerve conduct test?

It might be worth pushing for another MRI sooner - easier said than done I know! I think to rule out ms they generally need a scan of both brain and spine and one with contrast. Also I am bit confused as if there is inflammation on the brain does that not indicate MS? Or have they said you have CIS? That’s why they generally use contrast as think they need to prove more than one inflammation/ relapse separated by a period of time. Although it is worth saying that when I was in the process of being diagnosed the doctor said plenty of people only ever have one incidence of inflammation/relapse and never have anything again. Sorry not sure I have helped. The worry must be so difficult and frustrating for you. Do you have good family support?

Thanks for replies ladies, no I’ve not had a nerve test.
No mention of cis, one doctor mentioned ms but then neurologist said he didn’t thinkso and it could be from migraines or b12 even though I’ve said I don’t suffer migraines and b12 fine.
my husband is great but has to work so I’m on my own most days. He wants to ring the neurologist himself today as I’m not great at these things so we will see how that goes!
I keep thinking it’s TIA I’m having but would symptoms go on like this I don’t know.

If your husband is ringing your consultant anyway, why not prompt him to suggest a nerve conduct test and whether a repeat mri might help the situation.

I have sympathy it took weeks to get my nerve pain under control and I still get break through pain.

I am on both Gabapentin and Amitriptyline for nerve pain control. Maybe your consultant will up your doses until they manage the pain better. You also can ask your GP to prescribe and/or up your pain medication until they work.

Thank you. Yes he will definitely ask. He rang but it’s just message machine.. he doesn’t work Mondays. Pain not bad so far today Enron though I always find as the day goes on it seems to get worse! Chin is still numb and lips and tongue tingling on and off which is a strange sensation. I’ve also developed a ectopic beat in my heart the doctor thinks it’s from all the stress.

Ladies my husband rang and emailed neurologist explains everything and that we are really worried so I’ve a appointment on Thursday.. please god he will agree to another mri. Had a horrible evening yesterday with a strange episode was terrified again it was tia it felt like my brain actually had a massive contraction I don’t even know if there is such a thing but that’s the only word I can think of that resembles it!!😂