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.

Hi thanks for replying. MRI scan i had was almost 2yrs ago. So could it have changed in that time? I'm not sure if they used contrast. Numbness in my leg has now gone after 3days. But both feet are numb and finding it uncomfortable to wear shoes. When I'm trying to get to sleep have feelings like electric shock moving from one part of body to another.

Ah didn’t realise it was an older mri. Did you say your GP wasn’t being that helpful? Sounds like you need to be referred to neurology to get checked out and if your GP isn’t that forthcoming might be worth getting a second opinion from another GP.

I’d definitely try the ms helpline if you don’t get anywhere.

Hi everyone,

I dont know if this thread is still active. I am so worried and devastated and need some advice.

I am 26 and my partner is 28. I am 6 months pregnant with hes little girl it's our first child. Around 3 years ago he lost hes ability to speak for 3 days and the doctor passed it off as stress (he doesnt usually suffer with mental health and is very laid back) he works so hard and always has done. He is definitely the rock out of us both. We have been together 6 years and he is the best thing that has ever happened to me.

Anyway 3 years on and 4 days ago he started feeling like hes speach was getting bad again and starting sluring and stuttering. We both thought it could be down to the current stresses going on and the fact he cycles 24 miles a day to work and back (12 miles each way) because he doesnt want to get on London underground at the moment with covid. We had a few bleeds and problems with pregnancy last month but all ok now so this could have added to it too.

So carried on as normal and within 2 days it got progressively worse to the point he couldnt even get hes words out and was crying in frustration they just sounded like slurs. Hes right side of the body then went numb. We called 999 and he was taken to hospital in London and stayed in. We thought stroke...

They first gave him a CT scan Thursday eve which showed something so they said possible stroke put him on aspirin and done an MRI yesterday morning. As he cant talk the neuroligy doctor called me and said they cant figure out what it is on the scan but there is an abnormality on the left side of hes brain. They said it's either 1. MS 2.Stroke and 3.Brain tumour. He thinks MS could be the top cause because of what he had a few years ago.

They took some bloods and fluid from hes spine and sent him home. I am due to go back to pick up steroids today to see if it can bring inflammation down.

Does this sound like it could be MS ? Will the spinal fluid give us an answer? They told us the next step will be a follow up scan in 6 weeks.

This is going to be the worst 6 weeks of our lives. He is in peices as he can hardly talk. He just about managed to say last night ' what if I dont get to hold our little girl' I havent slept and am out of my mind with worry. I havent cried infront of him trying to stay as strong as I can infront of him for hes sake. Its just so heartbreaking to see him this way and am praying it's not a tumour.

The neurologist said the shape was strange on the scan so he couldnt figure out what it was from the scan and these tests should help.

In bits right now. Does it sound right that we have to wait another 6 weeks for this?

Thank you

Hi @Smartiex, so sorry to hear what has happened. I saw your post of a day or two ago on another thread too. I have MS and did also think when I read your original post that it was MS. The 6 weeks wait is probably to see how things are changing over time. After my first MRI, the neurologist wanted to wait 6 months for the next one.
However my symptoms are milder than those of your DH.

If it's any consolation, my neurologist told me that the treatment for MS is "fantastic" these days.

Hello

I’m sorry to hear that. This is what happened to me when I was diagnosed 4 years ago. I suddenly lost the ability to speak, started slurring my words etc. Happened several times over the course of a week until I ended up in hospital. I had an MRI and was diagnosed straight away. It was a bit different as I had had an mri 10 years previously when it had been flagged - unbeknown to me.

Try to stay positive. You say he cycles a lot. It’s good that he looks after himself as I was told the reason I’m so well is because I was so active. My symptoms started 20 years ago and I still cycled 150 miles last week and 120 this week! I am on tecfidera, which seems to work well with few side effects.

I find stress is the killer for me and symptoms so I am now really laid back about most things!

I hope you have some positive news soon

@icedancerlenny thank you for your message.

I will try my hardest to be as strong as I can for him. May I ask how long it took for your speach to come back? Did you take anything to help?

That is amazing that you are doing so much now and great to hear positive storys from it! Thank you so much for your message

A positive attitude is so important and the ability to focus on what you can do, try to live in the moment, it took me quite a while to accept I had MS for me I needed to accept that before I could move forward. I have a great Neurologist, when he gave me the news he said you are the same person who walked in here before I told you you have MS. I am also on Tecfidera, my first DMD wasRebif for everyone living with MS.

@acocadochocolate thank you that is good to know and nice to hear from people who have it and experience it. The past few days have been very hard and up and down but I am sure we will get there nice to hear your positive outlooks on these forums.

@Roselilly36
That is very true. I already feel when hes down hes symptoms are worse but this morning he was in a good mood and they seemed 10X better. He is just extremely tired at the moment x

Hi @Smartiex. I agree, it's important to stay positive. Like your DH, I am also a keen cyclist, although I have had to stop it for now due to my symptoms. I focus on what I can do - which is running, gym stuff and (when not in lockdown) swimming. I was only diagnosed earlier this year so it is all new to me too. I have two neurologists and they have both emphasized the importance of staying active. All the best to you and your DH.

@acocadochocolate sorry to hear that. It is good to see you are still managing to stay active. Do you take anything to help your symptoms? My partner is extremely sleepy at the moment and only wakes up for an hour or two between sleeping. Unsure if this is a side effect or not. Steroids are helping hes voice slightly but not much difference elsewhere at the moment like he had hoped

Hi @Smartiex. I'm not on the MS drugs yet - partly because my symptoms are mild and partly because my appointments have all been delayed due to lockdown. I have an MRI scan tomorrow though and am waiting for an appointment for a lumbar puncture.

I have bladder and bowel symptoms and am on medication for those. These were prescribed by my GP.

The thing that stops me cycling is dizziness. If I'm having a good day, I do sometimes have a short ride but I think it's a bit risky to go on busy roads if I feel woozy.

Is this an still active thread ?
Please can I join you ?
I need to talk to people that understand.

I haven't got MS I have a rare neurological condition called Dorsal Root Ganglionopathy. It stems from the bottom the spine and damages the nerves in my body.

I can barely walk and struggle up the stairs. I am numb from my bustline down
I can not feel my stomach, bladder or bowel.

The doctors have told me my damaged nerves in my legs and sluggish nerves in my arms are only likely to get 10 to 20% better if the treatment works well.

I start on a three day course of strong steroids to suppress my immune system soon as the Consultant can arrange it.

I am frightened, is anyone else struggling to walk, had anyone else had steroids and can tell me how to cope with the side effects ?

@Worrysaboutalot chat away, it’s a scary time. Did you post on another thread, I think I recognise your user name & I think I responded.

I haven’t heard of the condition you have been dx with. But I understand the feeling of being numb from the bust down, I was exactly like that with my first MS attack.

The MS Society helped me come to terms with my dx, is their a similar charity associated with your condition that can provide support. Have you good friends & support in RL, do you have children, mine were young when I was dx.

Wishing you all the very best. Take one day at a time and good care of yourself.

I can't find a support group, if I google I only get research papers mentioning DRG, no real people.

Yes, I have another thread on this.

Hi @Worrysaboutalot sorry to hear you’re having a tough time. I’ve no experience of the condition you’ve been diagnosed with but I can tell you my experience of the high dose steroids. I had a racing heart towards the end of the course - started about day 4 but that was only for a few hours then subsided. I had no problem sleeping, but I know lots of people do. I did have a slightly increased appetite but I tried to reign that in and other than that I had no problems. I was glad to finish the course by day 5 though as I didn’t like the palpitations. Also it’s such a huge dose you will see improvements up to 6-8 weeks after you finish the steroids as it stays in your system.

I know you haven’t got MS but have you looked at the MS gym on YouTube? I had leg and foot numbness and I did the exercise from this for the first couple of months. Not sure if they helped but I felt better for being proactive and trying. I did get improvement but that could of been time and the steroids.

Has your neurologist discussed longer term treatment options for you? Is there other treatments they can offer you?

Thank you for the suggestion of YouTube exercise. I will have look at that.
I am pleased to head that you are the third person who spoke highly of steroids
This is making me less scared of Thursday .

I only meet my neurologist once last week, when he diagnosed me and I was reeling from the talk, that I kinda switched off after, the 'we can't mend you much but we can prevent future damage' bit.

But I am going to ask about future treatment at our next meeting. I think it depends a lot as to why I have DRG aka what is causes it.

No worries, glad you are feeling a bit better about the steroids. Can empathise about not taking in what your neurologist said, I had my ms dx out of the blue - felt like I was in a bad dream.

I hope the steroids help and you get more answers about the future. I know you don’t have ms but sounds similar in that they can’t undo what’s already happened, hard to deal with an unknown future though. I keep telling myself none of us know what the future holds, so I try not to let the thoughts of how MS might impact on me in the future too much.

Fingers crossed for you xx

Thank you Tuesday40 I hope the future is kind to us both

Just thought I'd share my story.

From the age of 19 until I was about 22 I had many bouts of dizziness that left me being immobile at times. I was getting out of the bath one night when it first happened and I tried shouting for my then partner now husband and he said he didn't hear me. I remember thinking 'my voice sounds like it is coming from outside the house. Why is that?'

There were many instances like that. I had to supervised most of the time to make sure I didn't fall and hurt myself. Husband still recalls it to this day saying how much like a seizure it seemed but without the shaking as all I wanted to do was sleep and couldn't remember anything afterwards.

GP sent me for a CT scan and I was certain it was bad and I was so scared that it would come back I had a tumour but nothing answered why I was having these 'episodes.'

After that doctors put it down to anxiety and I thought that's what it was, so began taking medication for it but didn't help.

It was after this that I temporarily lost my sight, could only see multicolored pixels while waiting for the bus one day. Lucky I was close by to a relatives and after an hour or so came back. I didn't know what what going on or what to do about it.

Years after that the dizziness subsided but had problems with my legs. I'd walk about ten minutes before it would feel a tight band was wrapped tightly around it and my hands were forever going numb with pins and needles.

Not to mention the fatigue. It was and still is the worst part.

It wasn't until 2017 when it all started to make sense.

I was involved in an accident as I was on the way to the shops. I was knocked down by a teenager on a pushbike. He was coming round the corner too fast and I couldn't judge which way he was going.

I went to A+E to get checked out as I'd banged my head and had altered vision and felt very sick. I got the all clear and altered vision was diagnosed as concussion.

Concussion lasted two weeks then not long after that I began having a burning sensation in my left foot that didn't go away after a week then my right foot started. Went to my GP who put it down to overdoing it while exercising. That lasted about 4-6 weeks. Then it returned in October but worse so went back to GP who diagnosed it as sciatica.

Then in late Novemeber I lost most of my sight in my left eye. I thought it was just a pulled muscle or eye strain but after being examined it was diagnosed as Optic Neuritis.

My sight recovered from it well thankfully. I was told the consultant at hospital about my other episodes and symptoms and he sent me for an MRI and said GP should have sent me for one before then if I'd had them.

It wasn't until June 2018 that I got my diagnosis of RRMS. I was 28. I am now 30.

I was volunteering but felt I needed time to process the news. I had my DD nearly four months ago and my symptoms have been non-stop. I have constant buzzing in my feet and my legs are tightening again when I am walking. I spoke to my MS Nurse and she is writing to my GP for a prescription for neuropathic pain relief. I have also re-started Tecfidera as well but it has been a long process due to lockdown and restrictions.

I hope all of you are well.

@phoenixwings Goox grief. It took such a long time to be diagnosed. How are things for you now?

@worrysaboutalot I have good days and ad days. More bad than good though to be honest. I have this buzzing in both feet that comes and goes but it is constant. I get it at least three to four times a day and is really uncomfortable. Not painful just annoying. I often wake up to numb hands which always leads to pins and needles and it takes five to ten minutes before going away. I sometimes experience dizziness but not often but the worst part for me is the fatigue. I'll only be awake a few hours before needing to rest. That's the hardest part I find.

I think I have some nerve damage in my feet as when I walk it doesn't feel normal. It almost feels like I am walking on sandpaper and the fizzing/buzzing starts when I sit down and the muscles in my legs tighten a lot too.

I think this is all to do with my hormones decreasing after having DD as was mentioned by the MS Nurse when I was planning to start a family. The tecfidera seemed to keep symptoms at bay. I have only been taking them for nearly two weeks so I think it may take a bit more time before things improve.

Hi @phoenixwings wow sounds like you have been through the mill. Your feet sound similar to mine- they have never fully recovered all the feeling and I almost feel like the skin is too tight for my feet if that makes sense? But I keep reminding myself to trust them, I’ve not tripped or fallen despite the odd feeling so I am determined to be as mobile as possible for as long as I can! How you finding the tecfidera? Have you had the dreaded flushing? I didn’t know it was possible to go this red!!

Hi @Worrysaboutalot how are you getting on? Did you start the steroids? Hope you’re doing ok.

I am convinced I have MS. Can I join please?

Of course @Welcometothe36to40Box how are you? Are you having some MS type symptoms?