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MS or not MS that is the question?

Hi Everyone

I'm new to the forum though I have been reading snippets of posts over the last 6 months. I'm just looking for some advice and to share the emotional struggle that I'm sure many of you have been through in finding a diagnosis.

My story starts October last year - it had been a difficult few months as my partners mother and brother passed away within the space of a few weeks and I was trying to support him as best as possible whilst he was in Denmark. I guess I was really worn out travelling back and forth, worrying about him and still in shock myself over the deaths.

My first obvious symptoms started with pins and needles on the left half of my lip which at first I thought may be related to physio treatment I'd had for my neck 2 days prior. Anyway the pins and needles gradually worsened down my fingers, my foot began to feel numb on my left and get pins and needles too and I was getting stabbing pain in my L eye and armpit. My GP quite rightly referred me to a neurologist and I was seen to in a month.

At this point I'd noticed my symptoms were much worse when I came out of the bath, I felt tired and my L butt cheek had also gone numb. I saw the neuro who arranged for blood tests (vit B/D, ANA, thyroid, liver, kidney, FBC etc), EMG and spinal & Brain MRI with contrast.

I was reviewd again end of december by which point I felt a bit off balance though looking at me nobody would see anything, my L leg felt tired and stiff when I was walking and I couldn't run, I was experiencing intermittent bouts of pain in it also as well as bowel problems. None of my tests showed anything bar slightly reduced vitamin D and a few white spots on the MRI brain. The neuro said the white spots could be normal but theres a few more than he's happy with. He then turned to my partner and said how anxious is she? My partner knowing me said she's probably 3/5 she's logicaly worried but not over anxious. The neuro knowing I was a health professional said I know you've been very anxious and worrying and writing all these symptoms down etc etc maybe that isn't helping and you need to not focus on the symptoms (implying it's anxiety). He then said I can't say this is or isn't MS though I don't think it's likely but if you're very worried I can send you for LP and EVP it's up to you.

I walked out of the neuro office five minutes later feeling upset and nowhere closer. He'd left me with some time to think whether I wanted the tests. Over the next 2 months I decided to give the 'anxiety' theory the benfit of the doubt and didn't talk about symptoms, write them down and I asked everyone who knew not to ask me. I tried to carry on as normally as i could. By mid-feb I got to a point where I had to admit though the pins and needles had gone I still had bowel issues, swallowing issues, still sensitive to hot water, vibrations and pain which is terrible some days and almost normal on others.

I now have a review in 1 week with the neuro and I'm dreading it. I don't want him to just brush aside my symptoms - I don't look terrible but there are some days that i do feel really bad. I could go for an LP but he's already said even if it was MS he wouldn't put me on any treatment so i feel like what's the point. I could still have MS even if my LP was normal anyway. Looking back even before the first obvious symtpoms started I'd noticed some strange problems with my l leg and had had neck spasm which I'd not really thought too much about.  I'm so confused: something in my head keeps telling me all my symptoms sound like MS. But then this neuro who is an MS specialist says he doesn't think I have MS - then whats causing all of this, I'm certainly not hallucinating.

Any advice is helpful. Sorry about the essay - thanking you in advance

Hello, and welcome to the site happy2

 

Reading your post makes me suspect that the neuro has not closed the door on an MS diagnosis. I think, perhaps, that he is waiting to see how your symptoms progress?

 

It makes me very irritated that a neuro should write off white spots on MRI so readily though - anxiety cannot cause white spots (which is a common term for lesions). There is a rough rule of thumb that one lesion per decade of a patient's age is OK. This is not an official rule; it's just something that someone came up with sometime that has stuck. My personal (unqualified, but reasonably experienced) opinion is that it is absolute b******s. The fact is that multiple white spots in a young(ish) adult is NOT right!

 

To put this in context, the latest McDonald criteria for diagnosing MS states that a patient only needs one lesion in two areas that are typical of MS. That's TWO lesions. (Google Polman et al (2011). Diagnostic Criteria for Multiple Sclerosis:
2010 Revisions to the McDonald Criteria.)

 

So, if I were you, I would want to know exactly where my white spots were and how they compared to the McDonald criteria. I would also want to know exactly what the neuro is thinking in terms of diagnosis. At that point, I would make a decision about further tests. (Make sure and ask him what he will do if the tests are positive/negative before you decide.)

 

Neuros are not gods. Try not to be intimidated.

 

Good luck!

Karen x

Hi,

i was reading this and was interested in the criterea for a dx. I have a couple of lesions showed up and an area of activity in my neck.I had a lp which i hoped would either confirm or rule out ms.there were o bands present but they still wouldn't confirm. I needed another /more symptoms or a changed mri.i was told that they'd only do another mri if i got worse.I still have pain / burning sensations and tingly feelings but it's a big improvement to when this all started.but 9 months on i still want a definate dx/ a cure/ or for it to disappear.

lynn

 

Hi all

Karen thank you so much for your advice. I think you're absolutely right - my neuro is buying time to see what happens to my symptoms, I just wish he'd be a lot more upfront. The waiting is just frustrating particuarly when it's almost been implied that I'm imagining things and reading too much into things because I'm a health professional. I'd heard of MS but didn't know any of the signs apart from the eye ones until I looked them up and though I wouldn't wish MS on anybody it's not the worst thing that can happen and knowing there is a real reason why all these things are happening would in some way be a great relief. One thing I have been extremely greatful for is reading everyone's stories on this forum. It made me feel like at least I wasn't alone in the struggle to get answers and that even though waiting is difficult so many others have endured much worse. 

Completely agree that the system is comepletly wack when it comes to MRI's and neuro's.

I have looked up the revised Mcdonald criteria and will keep it in mind for my neuro appointment next week as well as writing some direct questions I want answers too down and try not to let the neuro brush me off. Fingers crossed I can push and find out exactly what it is he has in mind.

 

Lynn, Kate's advice is probably also good for you too - I'd look back into where exactly your lesions on the MRI were as the revised Mcdonald criteria do suggest dissemination in time space of lesions can shown within one MRI depending on their locations. I'd be interested to know what your starting symptoms were and have they put you on any medications to help manage them even though you haven't been diagnosed. The whole bureacracy with diagnosing is what makes me uncertain about having an LP too - what was your experience like of an LP? I see so many patients who've gone through them and some of them have had a terrible experience and others have been ok. 

 

Limbo land is so frustrating but it's nice to that there are people on this forum you can talk to about these difficulties so you don't feel like you're alone. 

Rima

 

 

 

 

There are two main criteria for diagnosing MS: dissemination in space and dissemination in time (dissemination just means separation). That means that more than one part of your nervous system has to be affected (space) and that you have had more than one attack (time).

To satisfy dissemination in space you need to have at least one lesion in at least two areas typical of MS. These areas are periventricular (next to the ventricles, the lakes of fluid in the middle of the brain), juxtacortical (next to the cortex which is the gray matter: the outside layer of the brain, nearest the skull) and infratentorial (the cerebellum and brainstem: the lower parts of the brain, nearest the spinal cord). The spinal cord is counted as infratentorial for this criterion too. So, e.g., if you have one periventricular lesion and one spinal lesion, you have ticked this box.

To satisfy dissemination in time, you need to have had at least two attacks. Ideally these should be documented by a medical professional, but the new guidelines state that the patient’s own report is sufficient (assuming it’s consistent with MS of course).

It is possible to demonstrate dissemination in time with MRI in two ways: if you have a new MRI and there is a new lesion (even if you haven’t had any new symptoms) or if there is evidence of old lesions on your scan. Identifying old lesions is not an exact science though so I would guess that a lot of neuros wouldn’t go with this unless it was particularly good MRI and/or really obvious. (I won’t go into why it’s not an exact science because it would take a lot of explaining! If anyone wants to know, please tell me and I will do it when I have more time.)

So, given what you’ve said, you haven’t satisfied the dissemination in time criterion as yet. It’s the most important one of the two, so they really are obliged to wait and see what happens, especially as some people never have that second attack (here’s hoping!).

Hth.

Karen x

Hi Jackie

that's terrible to have thought you've had MS for all those years and now find out you don't. I'm not suprised you're feeling bitter about everything. I'll certainly make sure they've exhausted the other options for what else this could be as well as exploring the MS option. I think thats probably why my neuro is being cautious - which I can understand from the doctors that I work with and how they tackle situations when we have patients with optic neuritis. I just don't like the whole anxiety label, I'd much prefer him to say lets wait and see what happens, this may all just go away or in a few months if things get worse we may have our answer. At least I wouldn't keep doubting and questioning myself.

Yes my partners great he's trying to be as supportive as possible though it's difficult for him to know how I'm feeling and what I'm going through, he trys to be there and listen, give suggestions and most importantly make sure I'm not giving up.

I will keep my fingers crossed that I move a step closer to finding the answers this friday on what this could be whether it's MS or not. 

I hope you find the answers to all the problems you've had Jackie and that you've got some support whether that's this forum/ friends/ family or a partner. Finding out you've got an incurable illness one moment and then being told you don't have it the next is terrible, I can't imagine how you must've felt.

Thank you for your advice. Good luck.

Rima

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hi Rima,

my symptoms started last summer. I had like pins and needles in a couple of fingers, then in my feet and within a week it had spread all over my body , my face felt numb and breathing difficult, it felt like i had the tightest corset on made of cardboard.After a couple of months this has reduced to a burning sensation in my hands, tingling in my legs, arms feel like i've got arm bands on  that are too tight.Initially i was offered steroids in hospital, but i chose to go home and i felt sure that it would go.i get random areas of my body that go to sleep, I stumble and get confused. rubbish at concentrating or staying awake to watch a film.I took gabapentin for a while but as the dose increased i became more dizzy, more confused.I'm taking pregabalin now. It has helped reduce the burning and ant biting feelings but i am thirsty a lot and have put on weight, I'm always hungry now.

At the start i had 2 mris done and a lp.I found the first mri quite scary and felt trapped,the 2nd one i just closed my eyes and listened to the noise. that was better than focussing on the mirror to see out of the tunnel. I was terrified of having the lp.I had it on the ward with a brilliuant nurse telling me about her escapades on holiday. the lp didnt hurt but i could feel a pressure pushing on my spine. the next day if i sat up too long I got a headache but as soon as i layed down it went.It was definately not as bad as the stories i'd heard and I'm not a brave person.

Hope all goes well for you

lynn

Hey Lynn

Thank you for sharing your MS story. The burnings terrible - I had it intermittently on my foot and it felt like I'd stuck it in hot sand. Thankfully thats been fairly short lived. I guess the thought of an LP is quiet scary as before all of this happened I thought I was a fairly healthy person and never had to go to the hospital for anything really. The MRI is scary, the worst thing I found was they put that ramp under your legs rather than lie them flat - becaude of it my left leg kept twitching and I had to really focus and tense to try and keep it still, I felt like asking them to strap it down. Yeah I kept my eyes closed throughout the whole thing - though I'm not a claustrophobic person, having so much noise and machinary around you really does hit home when you're in there. 

On a positive now I can really tell patients what these tests are like and sympathise with the difficulties - I have to try and look at this way it's what keeps me calm and collected.

Thank you again for your thoughts Lynn. Having the knowledge and right to make the decision whether I want to have the LP done is empowering - it's at least the one thing I have control over.

Rima

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Hey Lynn

Thank you for sharing your MS story. The burnings terrible - I had it intermittently on my foot and it felt like I'd stuck it in hot sand. Thankfully thats been fairly short lived. I guess the thought of an LP is quiet scary as before all of this happened I thought I was a fairly healthy person and never had to go to the hospital for anything really. The MRI is scary, the worst thing I found was they put that ramp under your legs rather than lie them flat - becaude of it my left leg kept twitching and I had to really focus and tense to try and keep it still, I felt like asking them to strap it down. Yeah I kept my eyes closed throughout the whole thing - though I'm not a claustrophobic person, having so much noise and machinary around you really does hit home when you're in there. 

On a positive now I can really tell patients what these tests are like and sympathise with the difficulties - I have to try and look at this way it's what keeps me calm and collected.

Thank you again for your thoughts Lynn. Having the knowledge and right to make the decision whether I want to have the LP done is empowering - it's at least the one thing I have control over.

Rima

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Quick note to anyone reading - the thing they stick under your knees/legs is to make you comfortable! If you don't like it or don't want it, just ask for it to be removed.

Karen x

If only I'd known - if and when there's a next MRI, I'm so telling them I don't want it!

Thanks Karen

I think because they do it all the time, they forget that most patients haven’t a clue what’s going on! They can give you that or not, let you position it (or other things) as you want, give you blankets or not, give you earplugs and/or headphones,…

It’s so silly really that they don’t spend a wee bit of extra time making sure we’re comfy - after all, it makes staying still very much easier!

A refresher course on using the intercom would be good too - how many half messages are heard by patients because they press the intercom button after they’ve started speaking and/or before they’ve finished I wonder?! I know I couldn’t make a word out the last couple of times I’ve been scanned!

Kx

I agree I think they go into auto-pilot and presume people know what they're doing and why. And the intercom - completely agree! I was trying to fidget when she spoke to get my leg comfy and cos she kept pressing the intercom button wrongly I ended up having to try and stay still the whole time just incase!

R

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