Un-diagnosed.

New diagnosis and before diagnosis
1

Hello.

Firstly thank you for anyone who reads or replies to this, I know there are a lot of threads like this but although some of them are very much relatable for me, not all of them sum me up on a personal level and I’d really like some advice on what I should be doing in my situation.

Last March I got optical neuritis in my right eye, it was very severe and I have lost most of my sight in that eye. I wasn’t offered steroids. I got an MRI on my head in May and the results came back clear for MS and the doctors said that I was just unlucky to get optical neuritis so severe and I haven’t been given any cause as to why my better than 20/20 vision had just magically disapeared in the space of a week.

I was dealing with that until around the begining of November this year, when I started getting terrible headaches, and pain down my neck and shoulders, they have been constant and severe, I’ve never suffered with migraines before. They have been so terrible that I have been signed off work now for over a month.

Then I started getting pains in and around my chest, It felt like the pain was in my lungs, like a crushing pain but it was/is only when I move around, then if I sit down it isn’t so bad.

Then for the past week I have had pins and needles in my feet and today they have spread all over my left side.

My eyes sight has been rubbish throughout all this but seemed to get worse this week, lots of purple dots and blotchy light.

I have been to my GP, emergency GPs, private neurologists and I will be seeing an NHS neurologist in a couple of weeks and they all make me feel like I am crazy, they just kind of shrug and say I don’t know, maybe it’s migraines or stress, could be viral blah blah blah. I should be having another MRI on my neck and head mid to late January but this seems too long to me? None of the doctors I see seem to think I have MS but whenever I look up any symptom it leads me back to this website. I know looking up symptoms is bad but I’ve been poorly and off of work for a month, I’ve got nothing else to do.

I do have some pre-exsisting conditions like Coeliac disease and B12 deficiency but I handle my diet well and I have been up to date with my injections and I had a recent blood test that came back all okay.

I could really do with some advice, I feel terrible and I feel like I’m wasting doctors time whenever I go see them, even when I pay them to see me. I can’t just stay at home and worry anymore but there doesn’t seem to be any way out of that situation right now.

I would really appreciate anything right now to stop me feeliing crazy.

Thanks

2

Hey, Thank goodness I’m not alone! Your not crazy it’s just the neuro world!! No one knows no one will commit! U think your then dreaming it all!! And of course your not!! Just keep pushing at them and use that as your focus to make any sence out of it all for the time being Loadsa love Claire xx

3

Hello, I am also currently undiagnosed. I cannot offer you any helpful advice as I am still learning and don’t quite know what to make of everything! What I will say is this place is great, very supportive and very knowledgeable. You are not alone and there is nothing you can’t ask :slight_smile: I am sorry you have and are having such a difficult time, we have all experienced that, ‘am I crazy question’? Having to fight for yourself whilst dealing with feeling horrid seems to be so difficult for some medical professionals to grasp. I will stop twittering on and let some proper advice shine through now! Lol Sam x

4

Fab advice Sam this forum is soooo helpfull Love Claire xx

5

Thanks for the support.

In regards to being un-diagnosed, how long have you been experiencing symptoms?

I have read that people with MS get flare ups but I can’t seem to find a time frame on these?

Also do any of you know the difference between having leisons in the head/brain and leisons in the neck/spine, does that affect the type of MS you could have? Is it ever likely to have a clear MRI on the head but discover lesions in the neck/spine? Is it likely for MS to develop from a clear MRI to having MS in the space of 6 months?

I can see that it is a supportive forum, I’ve learnt a lot from other posts and I am grateful for the advice and support especially as I may not have MS.

Do any of you have other health problems that aren’t related to MS?

6

Noticed that you hadn’t had any answers to the last post so here are my thoughts, fwiw…

People with neurological symptoms can go undiagnosed for many years - this is because neurology is a bit of a minefield: hundreds of conditions with similar symptoms and few definitive tests. We have several people on this forum who first started having symptoms more than 10 years ago, but are still undiagnosed. It seems, however, that none of these people have MS, but instead probably have rarer conditions that are very difficult to diagnose or that haven’t even been named yet.

Flare ups AKA relapses, attacks or episodes can last anything from 24 hours to many months (perhaps up to a year or so). It is possible to have symptoms that last less than 24 hours, but these don’t “count” officially.

People with primary progressive MS tend to have more spinal lesions, but there is no hard and fast rule about lesion number or location and type of MS.

It is not uncommon to find people with MS who only have lesions in the spinal cord. Anything up to 25% of people fit in this caregory, especially at diagnosis.

It is possible to develop visible lesions at any time with MS. (Lesions can vanish too.) Relapses = lesions / enlarged lesions, so a new relapse after an MRI could easily result in new lesions on a new MRI. It is also common to have “clinically silent” lesions with MS: these are lesions that cause no observable symptoms. So it is possible to develop new lesions without even knowing that you have suffered a new attack.

People with MS are more likely to have some conditions than people without MS. These include migraine, epilepsy, IBS and vitamin B12 and D deficiencies. Any individual with MS can have any other condition though; MS doesn’t prevent anything. Same goes the other way round. And some conditions come with an increased risk of MS, e.g. Crohn’s.

There are loads of publications available to download for free from this website and from the MS Trust website. These are very much safer than googling :slight_smile:

Hth.

Karen x

7

Thank you that is really helpful.

I have found a lot of information on this site thus far, it’s been very useful. It’s a shame that all the doctors I have seen couldn’t give me some of this information. After my initial MRI on just my head the specialist said to me it was very unlikely, less than 20 % that I would develop MS when she hadn’t even done all of the tests? That seems a bit unfair considering my current state of affairs.

Thanks a lot for all pf your help

8

Oh dear me!! I must apologise, I remember replying initially, seeing your questions and thinking I must respond in the morning as I needed my bed… And I forgot, surprise surprise, I’m such a doughnut!! Karen has been her usual fab self :slight_smile: I will try and answer your questions one by one: I have been unwell with neurological symptoms for 6 years (the other 17 I won’t bore you with!) The flare ups of symptoms I have experienced over those years have varied from 2 weeks right up to my current one which started in end of June/July, longest one yet and more intense. I had my first MRI in November and they scanned my brain and spine. I think this is from my clinical exam, I showed signs of possible cord damage. Karen helped me decifer the letter :slight_smile: I also developed a thyroid problem 6 years ago. The Doctor said it was struggling so I am on tablets for that. Like you have said, it may not be MS but the support on here for my Neuro symptoms have been so helpful, so great in fact I visualised members names and pictures to get me through the scans!! Sorry again for being absent minded :confused: Sam x