First post - help and advice

New diagnosis and before diagnosis
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Hi everyone, this is my first post although I’ve been reading the forum and website for a while now to gain some understanding of what is happening to me!!

I wanted to seek some advice…I’m a 37 year old male and for the past few years, I’ve not been my usual self. A few years ago I had a spell of about 4 months experiencing the craziest dizzy spells, chronic fatigue, odd and extremely disturbing burning sensations on my face and around my eye, tingling/numbness all over my body, lack of coordination, crazy shooting pains in my neck, constant headaches, the dreaded hug, regular stumbling, tinnitus, a completely numb big toe (!) and much more…my GP referred me to a neurologist, who has been great…over recent months I have had an MRI showing multiple lesions on my brain (none on spine), spinal fluid showing O bands and a positive VEP test.

Since my original symptoms, I’ve also had two further attacks along similar lines, although new symptoms include a constant feeling of being spaced out, not being able to sleep, severe pins and needles in both arms, regular ‘cold waves’ throughout my whole body, joint pain and my mood being continually up and down, which is totally unlike me.

The General Neurologist feels that I have MS and having done lots of research, I’m certain that I have it too, god damn!

I’ve now been referred to an MS Specialist Neurologist at The Walton Centre, Liverpool and have my apt next week. I’m really keen to get some sort of treatment as soon as possible as I’m concerned that one of these attacks will damage me for good and quite frankly I love my life too much to let it effect me

Having read lots of stories, mainly from this forum, I’m worried that the MS Neurologist may say that there isn’t enough evidence to officially diagnose me with MS and will therefore state that ‘we’ll see how it develops’…I really don’t want to remain in limbo as I want to remain positive, take this head on and get it sorted as best as it can be.

Do you think that there is enough evidence to officially diagnose me? Does anyone have any experiences similar to the above? Is there any advice you would offer for when I have my MS Neuro Apt?

I’m a really active and positive person, but must admit that this has been a real struggle! Thanks for taking the time to read

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Hi Paul,

I’m afraid that only a neurologist can make that decision. All you can do is keep a note of your symptoms and tell him or her what’s been happening.

The best thing you can do for the appointment is take your partner or a friend as sometimes there is often lot to take in. Take notes during the appointment if you want. Don’t be afraid to pester the neurologist to clarify any points you don’t understand.

Your positive attitude is a definite plus and whatever the outcome you’ll always have a will to get the most out of the hand you’re dealt with.

Regards

Anthony

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Hi Paul.

Great to have another bloke on here the place is clogged up with all these crazy lasses .

As Anthony said above only a neuro can give you an ms (dx) but please dont think its the end of the world if you get the news that you have it , there are plenty of medicines out there to calm your symptoms down .

When i was diagnosed it came as a relief as your not in limbo and you can now get help .

Chin Up bud .

Iain .

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Paul It does sound quite likely that you’ll get a positive diagnosis. But, try to take someone with you to the appointment. What quite often happens in these appointments is that, even thought you’re expecting positive diagnosis, once you hear the words, your brain starts going ‘blah, blah, what the f*#=£’ just got said’. The person with you needs to remember what is said about further tests, diagnosis, contact with MS nurse, DMDs. In fact everything. It’s a crap time, but sometimes it can be a relief mixed with shock and worry about the future. Sue

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Hi Paul,

Sounds like a diagnosis is highly likely, especially since all these positive tests that you have had. I hope you get on meds asap and that you get on well with whatever meds you choose.

Stay well,

Emily

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Hello

arm yourself with the MacDonald diagnosis criteria and the latest ABN guidelines (2015) for the treatment of MS. If your neuro suggests there isn’t enough evidence to support a diagnosis of MS ask him to explain why using the criteria with reference to your own MRI evidence and clinical history. If he is slow to offer treatment remind him of the updated ABN guidelines which support patient advocacy and choice and early treatment (rather than wait and see).

for what it is worth, I had numb toes and a numb groin for a few weeks in March 2016. This was my only definite MS clinical attack (as my MRI showed enhanced “active” lesions on my spine causing the problem). The MRI also showed multiple unenhanced or old lesions so there was proof of MS subclinical activity even if I had not been aware of any issues. This was enough to meet the MacDonald criteria of dissemination in space and time and label me with MS. A second MRI (3 months later) showed one new lesion (no new symptoms) and that was enough to call my MS active. I received R1 lemtrada in August 2016 and R2 this year.

So I managed to get into a highly effective treatment quite quickly and without long periods in limbo or severe clinical relapses - and there are lots of stories like mine.

So go armed with information and questions - and make sure you are happy with the explanations you are given about your disease and treatment.

good luck!

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I had one MRI- many lesions on brain and none on spine. I’ve never been hospitalised with an attack, just general aches pains, dizziness, off balance, urgency to urinate and probably a few more symptoms. Exaggerated reflexes too. That was enough to diagnose me. Good luck with everything :slight_smile:

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hi paul

thoroughly research the available DMTs and go in armed with your choice.

as a young, fit man you are an ideal candidate for the big guns.

lemtrada as katy is on sounds the best.

this is your opportunity to wrest back control of the disease.

wishing you all the best

carole x

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I keep getting an error whilst trying to post! Does anyone lese have this issue?

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Hi Guys, thanks so much for the great responses…I’ve been having trouble posting so apols for not getting back to you sooner.

I couldn’t agree more with what you all say about taking someone with you…luckily I have an amazing wife who has attended various apts with me and picked up things that I missed or didn’t hear…this was the case when my general neuro said I had MS - don’t think I heard anything else and just wanted to get out of the room!

I’ve been typing up all the various symptoms and times of what they have happended over recent years and months so that I am armed with as much info and don’t miss anythign when I go to see the MS Neuro - I can leave the info with them and it’ll at least be on my record too - all about being prepared eh.

Probably sounds daft and obviously I don’t want it this way, but I am keen to get this officially diagnosed so that I can’t start doing something about this…I’ve felt pretty helpless whilst being in between various apts and stuff, even though I knew what was up with me…guess it will explain why I’ve been struggling as I’ve been like ‘what the hell is happening to me!?’

I must admit, the hardest thing for me this far has been actually talking about it…every time I do, I get emotional as think there is lots of anger and frustration deep inside - guess I need to let this out soon. I 've also found not feeling as physically string as my normal self a real frustration, however I keep telling myself there are much worse things out there…so just gotta believe and stay strong eh

I’ll do some more reserach on the MacDonald Criteria - it looks useful to really undertsand this. I’ll also check out some of the treatments…I had a look at Lamtrada…sounds really good, although I hate needles haha.

What I’ve found so far is that a lot of it depends of which professionals you see. I feel that I’ve been quite lucky so far and been helped by some top people. Agree about the Walton Ctr - had my LP there and there were all amazing. My apt is on 10th …I’ll make sure that I take your advice and feed back after my apt…here’s hoping things go ok. Stay cool and thanks again for the great advice and info

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Hi all, sooooo had apt with ms neuro today…just to recap - in my mind I’ve had x3 Potential relapses and have multiple lesions on my brain, o bands from LP and positive VEP test. In summary, neuro thinks that I’m somewhere between CIS and RRMS and wants to see me again in 4 months time and to take another MRI in approx 6 mths. I think he feels I’m RRMS although in his view there isn’t sufficient evidence that I have had 2 relapses as only one MRI…I had one a few years ago via ENT, although this shows some lesions it’s hard to tell due to the type of MRI, so not counted.

The neuro arranged for me to meet an MS nurse which was useful, so guess it’s just see how I get on…still in limbo somewhat, but I guess it’s moving forward…any thoughts?

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Hi Paul, just to say I have only read your first post, 1 paragraph upto the smilie x Just don’t want to read the rest as its scary that I have the same things but I haven’t been to the doctor:( too scared, maybe because don’t want to complain and don’t want to find out that I have ms.

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In a way we’d all rather have less conservative responses from neurologists. Rather than shilley shalleying around with maybe RRMS, sometimes a straightforward MS diagnosis is to be preferred.

If you know that you’ve probably had three relapses, then you’re probably confident that ultimately you will be diagnosed with MS. I believe I would be in your position.

So more to the point, how do you feel about it?

Sue

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Hi Sue, thanks for your response. I guess what was discussed made sense. Sounds like I need another MRI to show additional damage/another relapse…annoying that the ENT MRI from 2015 wasn’t useful so just a waiting game now. I’m feeling OK about it, it is what it is…all I can do is remain positive and continue with everything as best as I can. I’m linked in with MS Nurse now so can gain advice directly from them if needed rather than having to go to my GP etc…I did think I would be one of those cases where the RRMS diagnosis happens really quickly, but evidently not! That said, I’ll just have to see how I get on and I actually feel OK about it…I had over an hour to discuss with the neuro which was really useful. Thanks again for your thoughts. Bizzy, it sounds like you should get yourself off to your GP…at the end of the day, it’s your health and there’s nothing more important. If you don’t feel like you can go on your own, take a friend/family member for support - best to take these things head on. Good luck and let us know how you go on.

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Bizzy

There are many different diagnoses which share symptoms with MS. Sometimes very simple things like a vitamin B12 deficiency. You’ll only know if you take yourself to your GP, explain what symptoms you’ve been experiencing and ask what they think. You don’t need to say (in fact it’s better if you don’t) that you think it sounds like MS, but you can ask whether they think it might be neurological in origin.

Just because what you’ve experienced sounds a bit like someone who’s most likely got MS, does not mean you have.

And for as long as you don’t get yourself checked out, you’ll be worried stupid that you have MS or something even worse.

Let us know what you do and what the doctor says.

Sue

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thanks for your advice Paul I know I should but what if I don’t have it and get labelled or I do have it and have to admit to it. I am 50 years old with a 13 year old boy and a 48 year old husband with parkinsons disease.

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Bizzy

Supposing you do have MS. 85% of people have the relapsing remitting variety. And today there are very effective disease modifying drugs available to reduce relapses and the severity of relapses. So actually with RRMS, you are better off being diagnosed than not. Because then you can avoid the damage caused by relapses.

When I was first tested for MS, it was over 20 years ago and there weren’t any DMDs. So there was no value in being diagnosed. And having not had the benefit of DMDs I’ve suffered for it. I’m way more disabled that if the DMDs were available at my diagnosis than now.

Which means that as a parent and the partner of someone who has his own neurological disease, you might find you remain stronger, healthier and more capable of looking after your family, either diagnosed with MS, or finding out that you don’t have anything to worry about.

It’s obviously your own decision whether to follow up your own symptoms or to ignore them. I personally spent 5 years ignoring mine, so I’m not in any way judging you for choosing to ignore vague symptoms. But the fact that you’ve joined here seems to indicate that you are starting to become more concerned.

Sue

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Paul, if you are having issues posting messages it may be your ‘smilies’. When I first used this forum I lost lots of ‘posts’, after having a moan on here someone suggested that may be the issue, since I have stuck to the limited ones available here rather than using the ones on my iPad and since then I have had no issues.

i wish all was as easy to solve !