Need a handhold - possible MS

[emsmum79]

Hi all, I'm needing a handhold please. Strange vertigo for over a year, more recently strange sensations and pins and needles in my hands and feet. Dr has pretty much ruled out everything and I'm now waiting for a neurology appointment to see if it could be MS. I'm feeling really scared. I'm early 40s with a 5 year old, a job, active life etc.

I have MS, it’s honestly not the end of the world. Wait for a diagnosis and then take it as it comes.

If you need to chat / ask questions I have MS. Am 41 diagnosed at 25 after 4 years of yes no maybes
I have had 4 kids under 5 run two marathons and held down a 4 day a week job ( Though not currently working )
It’s not as bad as you may think

Ok, this is helping. I know of people who have extreme forms, and that made me panic. The strange sensations are horrible and that worries me.

I was diagnosed at 41 I’m now 50, I was relieved to be diagnosed because I knew something was wrong but couldn’t say what. Obviously with hindsight I had been displaying symptoms for 20 years. It is scary if you look at worst case scenarios which we all tend to do but honestly you could walk past me in the street and not realise I have it (that brings it’s own challenges at times). I still ride, go to the gym, walk the dogs....

Thanks all. Can I ask, if you don't mind, about your symptoms and diagnosis?

Hi OP I used to work for an MS charity and the speed of change when it comes to research and treatments is amazing. If it is MS then hopefully there will be a good treatment option for you. A good friend of mine that I made when working there was diagnosed early 20s and is now mid 30s and living a totally normal life. Everyone is different of course but for many people it is treatable these days. Fingers crossed for you.

I have a relative who was diagnosed thirty years ago (at about your age) and a close friend diagnosed ten years ago (at about 50).
I wouldn't say it hugely impacts on either of their lives, apart from the mental strain of knowing that the fragile status quo could all implode. They do all the things a normal person of their age can do, and treatments are improving all the time.

Original symptom was optic neuritis then the one that confirmed my diagnosis was loss of use of one arm.
Both recovered from

@girlsyearapart, did you recover naturally or with treatment?

My friend has MS. It doesn't affect her at present.
She thinks her grandad had it too but was never formally diagnosed - he remained active all through his life with no treatment just the odd symptomatic episode.

I was diagnosed 9 years ago. I'm a nurse and still work full time on a very busy ward. Thanks to treatment, I've not had a relapse in years. Just flare ups every couple of years that last about 6 weeks. As a PP has said. It really isn't the end of the world.
I've had Tysabri and then Alemtuzemab and it's been amazing.
The worse thing about it is other people's reactions and constant opinions on it. And the "my mums cousins, brothers dad had it and he died of it".

Mine was picked up on an MRI scan I did as part of a research study for my local medical school. It was a bit of a bombshell, as I had no idea.

@emsmum79 usually get given a course of steroids which I take at home or done by IV if v bad
General daily / weekly flare ups then I have a sleep or a rest and it goes away on its own
I am on my 4th type of medication now

Another MS'er, diagnosed 5 years ago now at 44. Very similar symptoms to you and 5 years later, still work, am more limited with walking any distance but can walk.

Good luck!

Just to give a different slant op, I had exactly your symptoms 3 years ago- constant dizziness, tingling in arms and hands and vision felt strange. I had just had a baby and was terrified- constant trips to GP and who thought it was ear related (labyrinthitis) but I didnt think so. I eventually went the private route and had an MRI as I was terrified it was a brain tumour or MS. This came back clear which was a massive relief. My symptoms eventually went after 2 years and I genuinely think they were stress related.

Wishing you luck with your MRI

Another MS'er here, diagnosed 10 years ago, back then I had young kids and didn't want to be diagnosed as I thought there would be nothing that would help me. How wrong was I? I now tell anyone who suspects they have MS to get a diagnosis ASAP and get onto a DMD because it does help.

There is lots of support, masses of information and so many drugs that can help you please do not be afraid, tackle it head-on - you are strong.

Thank you, all. This is definitely helping.

@Redpriestandmozart, what's a DMD?

Disease modifying Drug.
I think they've changed the guidelines in the last few years. When I was diagnosed, you had to have a certain number of relapses in a year or something, in order to get treatment. Now I believe they are going straight in with the big guns, to reduce the damage. If you are diagnosed. And they offer you immunotherapy take it!

@Toddlerteaplease

Disease modifying Drug. I think they've changed the guidelines in the last few years. When I was diagnosed, you had to have a certain number of relapses in a year or something, in order to get treatment. Now I believe they are going straight in with the big guns, to reduce the damage. If you are diagnosed. And they offer you immunotherapy take it!

Yes, sorry disease modifying drug or DMT, therapy. My first DMD had a relapse reduction rate of around 30% now I'm on Ocrelizumab with a reduction rate of about 70% which for me means I haven't had a relapse in years and no side effects from the drug. It is better to put you straight onto a higher efficacy drug which reduces disability.

Diagnosed 25 years ago now by a process of elimination plus a lumbar puncture. I had a number of sensory problems for the first few years - numbness, tingling sensation, l’hermitte’s, a weird thing that felt like sunburn, bit of a limp, extreme but short-lived fatigue, and vertigo that was so bad that if I made any sudden move (or frankly every couple of hours anyway) I was flat on the ground. That only lasted a few weeks. I had a course of IV steroids, but no other treatment. I read up on it a lot at the time (no Internet then!) and one of the things I remember was that the outcomes
where initial symptoms were sensory (like yours and mine) tended to be better. Consultant at the time told me that you tended only to hear about the severe cases because otherwise it was invisible. He also told me not to try to run a marathon, to avoid live vaccines, and v hot countries (not done that one).

I continued working throughout full-time initially, then part-time. I’m now 60 - and none of my colleagues have a clue. I’m reasonably sensible and haven’t needed to see a doctor about it for 20 years. All I get now is what I think of as occasional ’echoes’ of my previous symptoms. I don’t even think about it for months at a time.

One last thing, not sure if you have/plan to have children, Consultant also told me that symptoms tended to improve during pregnancy and worsen for six months or so after giving birth, but overall having a child makes no difference in the long run. This has also been my experience. Good luck op.

@Redpriestandmozart I’ve just started on that DMD so far so good

It might come back clear.
I had an MRI for suspected MS early this year and came back clear. I've had symptoms of ME for nearly 3years which a lot of them are same symptoms of ms and have pins and needles and numbness in feet and hands.
Turns out ME is the diagnosis and he said sensations are most likely due to a back condition I have.

The cost of the treatment makes me incredibly thankful for the NHS. Tysabri is £1000 a dose. Alemtuzemab is £15,000 a dose and you have 8 of them. Plus steroids etc!

@Toddlerteaplease, that's terrifying.

Thanks everyone for the advice.

@emsmum79 yes. I remember looking at the American website for the first drug o took. And it saying "You can have your Copaxone for x dollars a month with copay" All I could think was, it's bad enough to have that diagnosis, but having to pay for your treatment is awful!