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The Not Knowing/mid diagnosis stage

A few months ago, I knew very little about MS but when all of my symptoms started in October last year, I somehow knew I had it! It’s safe to say I now know a lot more and the forum is particularly helpful so thank you!

I saw the neurologist for my MRI results a month ago and he showed me the lesions on my brain and spine and he diagnosed it as RRMS. He has referred me to an MS specialist and last week I saw the MS nurse who was brilliant and answered my long list of questions the best she could. She told me tell the DVLA and that we were treating this as a full diagnosis of MS until anyone says otherwise.

The first neurologist I saw believes I have had at least two relapses since October and I am currently suffering with Lhermittes (apologies if that’s not not the correct spelling)

But I suppose my concern is, is the specialist going to agree? I already know I have lesions in two different areas, different areas in the brain and different areas of the spine! My neurologist thinks there has been more than one relapse and from my symptoms, I very much agree but will the specialist agree? Is that going to be enough?

I suppose my concern is that I’m very much trying to come to terms with the idea of having MS and I really don’t want to be left with a diagnosis of CIS and no treatment for something that since October has really had a life changing affect on me. I of course don’t want MS but I also don’t want to feel completely out of control of this situation.

The thought of having more tests and more waiting is just exhausting! After all of the evidence so far, I still feel very much in limbo which also feels quite silly considering the evidence we have so far!

i felt the same relief when i got my diagnosis. if it hadn’t been ms i’d have been out of my mind. 10 years later and think if only i could go back in time! relax because your original neuro is doing it right by referring you to an ms specialist. wishing you well either way

I am sorry about your dx. I did smile at your first paragraph because your experience (somehow knowing from early on that you had MS despite knowing little about it) chimes so much with my own.

With so much that is unsettling about your health right now, it is no surprise that your system is on high alert for the next threat as you perceive it - the risk that the specialist will take you backwards instead of forwards. I think the only thing I would suggest is that - if possible - you resolve to cross that bridge when you come to it. For now, you have quite enough on your plate in terms of the actual without spending too much precious energy on the theoretical.

If you can’t manage that right now, never mind. Even without those extra worries, you wouldn’t be having a terribly nice time at the minute, so don’t ask more of yourself than you have to give. These early days can be tough times, but you’ll get through it. Hang on in there and try to be kind to yourself.

Alison

Thank you Alison! I just want things to feel normal again! However I think my ‘normal’ might have taken a permanent change. Since all the symptoms started in October, I can see how much I have changed and I find that frightening. The results of my MRI are pretty conclusive to my first neurologist and I can handle a diagnosis of MS but it’s the constant waiting for appointments, the ifs and buts, all of the unknown that I am struggling most with. I want someone to give me a conclusive answer, give me some drugs so I feel I have slightly more control over this and try to carry on as normally as I can. Right now I feel on my own, with something causing me to feel so rubbish, that could at any moment make me even worse.

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Thank you! I know, you’re right. I just want some help for all of this. I want to feel like I’m somehow in control. If the specialist also agrees it’s MS I can try to move forward and take drugs to try and feel more in control. The waiting for appointments, the worrying this might get worse before I even get to see the specialist is hard.

EW5514, that’s totally described how I feel too! I’m waiting for my MRI re-scan so am in the ‘limbo’ CIS stage. If you don’t mind me asking, what symptoms have you had since October? It’s strange carrying on with ‘normal’ life feeling like I’m trying to manage symptoms without really being able to explain the ‘why’ bit yet. Don’t like the feeling of unknown and it all being out of my control. How long do you have to wait to see the specialist?

So sorry to hear you’re feeling the same as me! It’s not a great way to feel! When this all started in October I had awful pins and needles in my feet, a burning/tightening sensation, couldn’t walk for very long, felt like my feet were being crushed and that went on for about a week but at the time I started a new job and couldn’t take anytime to get it checked! The burning/crushing feeling went but the pins and needles remained in the feet and started to spread up my legs! It was then that I realised something was very wrong. Since then I have had different symptoms, the skin round my stomach went incredibly sensitive to heat/cold/touch! After a week that got better, at the same time I also felt like my elbow was wet! Very strange! That too has gone! And then for the majority of this year I have what can only be described as an electric shock feeling down my back, legs and now arms when I lean my neck/back down! This can take my breath away and knock me sick! Hopefully this can be eased with tablets when I see my gp next week! I started to notice I was exhausted, wobbly and weak, some days worse than others! But after my first appointment with the neurologist, he was very confident there would be no reason for all of these symptoms and or the majority of people who see him with these symptoms, there is no known cause. So I cracked on and just thought maybe it was anxiety!

My mri scan showed multiple lesions on both the brain and spine! My neurologist diagnosed it as RRMS and my MS nurse also agrees based on what we know so far. However I am still waiting to see the specialist and I have no idea how long I will have to wait. It took 5 weeks to get the results of the mri and it’s already been 4 weeks since I had those with no appointment to look ahead to. I did however see the MS nurse last week which was really helpful.

When I got new symptoms I would google it (cause I’m curious and very silly!!) and everytime I put in a symptom, ms related websites would pop up! I went to the dr with my concerns it was Ms knowing barely anything about it and through no fault of his own, the consultant was very positive based on my physical tests that it wouldn’t be MS! We now know I have lesions, and it’s understood I’ve had more than one relapse! But there’s still that uncertainty that is what the specialist will think. Like you, the waiting around is hard!!

I KNOW EXACTLY WHAT YOU MEAN, I’M IN LIMBO, SO MANY TESTS, SCANS AND STILL NOT A DIAGNOSIS, DEEP DOWN WE KNOW OURSELVES BUT UNTIL IT’S WRITTEN IN BLACK AND WHITE WE ARE THE ONLY PEOPLE THAT KNOW! I’M SICK OF IT NOW, DON’T KNOW YOUR SYMPTOMS BUT I AM VERY UNSTEADY ON MY FEET AND IN CONSTANT PAIN, BEEN DIAGNOSED WITH P.A.D AND PLANTAR FIBRO(SOMETHING) BUT IT JUST FEELS LIKE I’M BEING PASSED FROM PILLOW TO POST!