To ask if anyone with Multiple Sclerosis wants to moan? Or others want to learn about MS?

Can I ask if you went on to be diagnosed? I’m having the same symptoms as you have stated here, I’ve paid for a few private tests, but I’m too ashamed to go to my GP as I think they’ll think I’m crazy. I feel it to have such a number of issues. I hope you are well

How did you go on the end??

Yes I could taste spam in that post too. Vultures

Reported for spam.

I'm on my 4th or 5th MS Nurse, I've lost count, the first two were amazing but now (especially since COVID) they are worse then useless, if you call for help it's ignored they never return your calls so I don't bother anymore, same as everyone else I just get on with it. I used to have an annual check up with a neurologist but again that's stopped so there is no where to turn to for help. My MS is very active right now with new weird and wonderful symptoms but tbh even if you vould speak to someone here isn't much they will do other then tell you to rest or they offer steroids which I prefer not to do as I've been told the side affects are horrible

Full bloods done, no vitamin B12 deficiency but I do have a slight folic acid one. Its been an ongoing issue now for over a year. No amount of supplement seems to rectify it

Mine is great (so far). She’s just phoned with paperwork stuff so we don’t need to rehash that tomorrow when I see her.

@CosyCoffee yes MS nurses, my first one, tbf was very good, very supportive & helpful, she left. I think I am on MS a nurse number 4 now, the last contact was a very short telephone call, blink and you missed it sort of thing. I like you tend to just get on with things, I was diagnosed 11 years ago.

@ellie09 have you had your b12 tested? Your symptoms sound very like my relative's who had b12 deficiency. If so it is easily treated, my relative is now back to normal.

IME MS nurses are worse than useless- worse because they are paid to help us and don't, and they give the false impression that help and support are there to be had. My ms nurse doesn't answer the phone or reply to texts. I've had at least three, all various shades of chocolate fire guard.

I feel a lot better since I came to terms with the fact that I am the only person I can rely on to manage my ms, which I do largely through lifestyle. I research and advocate for myself. My ms is stable and no more than I can cope with after nearly 20 years since diagnosis.

Please, everyone reading this, do not be tempted to regale us with your gruesome tales of how your friends and relatives have suffered on this thread that is to support those of us with ms. Start your own thread.

This is what i find hard. I don't have MS but have a similar and rare condition (myasthenia gravis).. It often leaves me unable to walk/swallow/speak. But I think because people haven't heard of it/don't understand it, they assume it can't be that bad.

If you have a ms nurse, it would be good, I have a Parkinson’s nurse and find her to be helpful.
so far, my Parkinson’s is not too bad

@Nsky62 yes it is. And less support available. All o could think when I was diagnosed, was that if it had been a cancer diagnosis. There would have been a nice place to go, like a Magggies centre, with fluffy cushions, tea and people falling over themselves being supportive. Instead it was. You've got MS, off you go.

Ms sounds like Parkinson’s, under researched and under funded

They have referred me for investigation to the neurologist due to some mild symptoms. I think they are concerned as I had "inflammation on the membranes outside of the brain" on my last MRI, but said they were not concerned as long as there were no symptoms.

Few years pass and I have been getting pins and needles, and almost tingling sensation in my hands and feet. My feet will sometimes spasm and it becomes painful. The tingling would also be down one side of my face at times. A few weeks back I had trouble walking as my left leg seemed to almost feel locked at the hip and unable to move. It resolved after a few minutes. I've also had troubles with swallowing water. I would frequently cough and splutter as I didn't seem to be swallowing correctly.

I told these symptoms to the GP, but due to them being mild and having little impact (bar some annoyance) I have been told there may be a wait of up to 5 years for an appointment.

After my last MRI, I am slightly concerned that it may turn out to be MS, even though I know its rare.

Ms is a cruel and gravely underfunded and not researched enough. When i was 8 my father sadly received his diagnosis during the early hours. In 1998. He was fine , he was a project manager had a mortgage and all of the experiences ticked off. My Dad is my hero always has been always will. In the last ten years the relapses began. He accelerated into a wall because his foot just would not move and every year he would be hospitalised and bed bound long term. He would always come home and be fearlessly determined to not ms stop him. Hes recently gotten more sick and had to have a catheter fitted due to enlarged prostate ( my dad is really proud and this has hurt his confidence) So the other week a ambulance driver (an angel) came to take him for a routine appointment to his ms consultant. She let herself in with a spare key my dad is on the floor covered in vomit unresponsive with a slow pulse. The ambulance crew were there immediately and she rung me as i am his only daughter. My dad has apparently had a load of seizures and unfortunately some mini strokes. I went to see him it was so hard fighting the tears. All he can say is yes or no . I said “ Dad i love you please dont be scared “ i saw him the next day and his face lit up like a kid on christmas “hi jade!” He could speak again! But does not make sense. My dad was such a smart and sharp witted man he is my spritual guardian, hes always encouraged me to be active he taught me how to spar properly and im sat up in bed with tears dripping cause its like my dads here but ive lost him at the same time . Im finding out tomorrow if he has had a mri yet as he was too agitated to cope with the procedure. He is being treated for meningitis also . Multiple sclerosis is a cunt no one deserves !

I'm off sick at the minute with a flare up. Managed to persuade my manger to let me do non clinical work next week. So at least I'm around people. I hate being off work. I love my job!
Met a couple of people who didn't know I had it, and I really hate it when you get the 'shocked' reaction.
And while I'm moaning. I had to reschedule my next clic appointment, as I'm on a work course that can't be cancelled and needs 100% attendance. The next appointment they offered is autumn 2024!! I said I was happy to see anyone, they claimed not to Mike swapping consultants, I pointed out that they had changed my appointment 3 times and each letter had a different consultant on it!!

I know two people who have MS, one diagnosed age 21, had quite severe sudden onset of symptoms (couldn't walk, couldn't talk coherently) however, it was brief, symptoms resolved, she was on medication but stopped when trying for baby at age 25, she's 30 with 2 children, she still has annual reviews but I believe she's not had any flare ups.

Another woman I know diagnosed late 20s, her vision went poor, she lost balance and had tingling, weakness and slurred speech. It took her 5 years to get diagnosed (she said she had to present the doctor information about MS as they weren't taking her seriously). I don't know what her course of action was since was diagnosed but she is now 55 and she said she has not had any symptoms for 20 years and she's fit and well, she doesn't take any medications but is quite into her natural anti inflammatory things like prebiotic, turmeric and manuka honey etc.

That definitely sounds like depression!

That sounds promising, I have an e-stim device which comprises of electrodes on pads to stimulate my legs. I'd better not try them on my head though 😂

I don't think I'm depressed, I just don't have any oomph. I'm quite content being at home, reading and watching tv and seeing just close family. I don't recognise the person I used to be ten years ago when I was working, keeping the house spotless, socialising and so on. Just have absolutely no drive to do any of it.

@CosmopolitanPlease are you on antidepressants? Sounds like you are depressed.

It's being run by the university of Nottingham. I was contacted directly by them and asked to take part. It's very time consuming do you need to live close by. It's basically putting magnetic pulses through my brain. And then seeing if my cognition has improved. It's already approved by NICE for depression I believe and available on the NHS in a couple of places.

@Toddlerteaplease that sounds intriguing, can you tell us more? I tried googling but couldn't find anything.

One of the issues I struggle with, which I believe is caused by MS, is apathy and lack of drive. I can't cope with anything mildly stressful anymore and endlessly put off stuff that I don't want to do. I have little interest in anything beyond my now small world in which I exist.