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Am I lucky?

I’ve been reading this forum avidly for the past 10 days - ever since neruologist said, ‘so you have ms, so what’! I have been so shocked and scared and yet as I read your posts I realise that it appears that, so far, I am extremely lucky. I have only very mild symptoms - they have appeared over the last year or so, numb thigh, dentist face, tingling toes and a couple of twinges of L’hermitte’s syndrome. None of these were enough to particularly even bother me and I had no idea that they could indicate ms. I went to the gp who did bloods for diabetes, vitamin B12 etc which were clear. He referred me to the neurologist as apparantly tingling in both feet has to be neurological. I waited 3 months not particularly worried (gp had said he didn’t think it would be serious). And then I get the response above.

Here’s where they lucky sets in. Because the neurologist was so loose with her tongue, because she let the ms words out I’m getting the tests done at this early stage. She has given me the diagnosis and when I went back to the gp he acknowledged that ms was his suspicion and the reason I was referred (even though it is not named in his referral letter). I have had no struggle for diagnosis, even if I have had a massive shock. For that I can see from reading your posts, I am grateful.

I did think I’d share this because it is clear that the gp and neurologist both knew that ms would be the outcome but if she hadn’t slipped up I would have been sent away to wait for further symptoms to appear. Whether this is for some patronising reason of not wanting to worry me or becuase it saves money for the NHS I don’t know. I’m hoping that this will help to inspire you to keep going if you are struggling to get diagnosed. While it may be that they don’t know, in my case they forgot not to tell me. When I called back to speak to the neurologist she said she was sorry she’d scared me, she thought I was mentally stronger!!! GRRRRR. How strong exactly do they think you have to measure before being straight with you?

So, does anyone know, am I likely to stay lucky? Since the diagnosis the minor symptoms I have have all flared up but I don’t have any new ones. Is four/five small flare ups in a year considered good/bad. Will I qualify for drugs if I want them…how many questions can there be!

SB

Hi SB,

I was diagnosed in 1998 and like you I considered myself very lucky. Symptoms started over 20 years ago. Tingling all the way up my legs to my waist if I walked any distance - which I ignored. Other small symptoms - numb leg for a while, vertigo etc. Was diagnosed with benign MS and have been very fortunate with no real relapses. It’s only in the last 4 years where my walking has been affected because of very stiff leg muscles - so started baclofen only 4 years ago.

So, just get on and enjoy your life and dont worry to much…

Jen x

Hi Seaside Belle and welcome

I’m really sorry but I can’t make out from your post whether you’ve received a concrete diagnosis of ms or whether you’re still undergoing tests and it’s a ‘possible ms’ - if you see what I mean? It’s probably me 'cos I’m really not with it at the moment…

Sometimes it’s a really long haul to getting a firm diagnosis because there are so many other conditions that can have the same symptoms as ms - these need to be ruled out along the way. Plus of course appointments can be months apart and the average neuro won’t commit themselves to anything until they have enough evidence to back it up.

It’s impossible to say whether you’ll ‘stay lucky’ - hopefully you will - but there’s really no telling - ms can be and is so variable for each of us. But if you have bothersome symptoms then it’s definitely worth speaking with your neuro and asking for some help with them, there are lots of medications available that can make a world of difference. Has your neuro mentioned dmd’s or assigning an ms nurse to you?

Debbie xx

Are you likely to stay lucky? A tricky question!

Because so many people in the world have MS, it’s possible to do very broad averages across different groups to see what happens to people with particular characteristics. Some of the “good” signs I’ve heard are being female, having sensory and not motor symptoms, having a big gap between first and second attack, having RRMS instead of PPMS, having fewer lesions on the spinal cord and there are probably others too. The thing is, this is a bit like saying that men are taller than women - yes, they are on the whole, but there are still small men and tall women who break the rule. Actually, the men/women height thing is probably a bad example as there are fewer people who break this rule than who break the MS rules - it’s just not cut and dried at all - MS is incredibly variable and almost entirely unpredictable. So it sounds like you have every chance of staying lucky, but I’m afraid there are no guarantees.

As far as DMDs go, there are eligibility criteria that people need to meet before they can get them. The key thing is to have had at least two “clinically significant” relapses in two years. The tricky thing is “clinically significant” because there is no proper definition of this and a lot of neuros and PCTs add their own interpretation. Very generally, it seems to mean severe / disabling / debilitating. For example, I had a month of mild vertigo a while ago which was annoying but didn’t really stop me from doing anything. My neuro wrote in his letter to my GP that I had had an attack of vertigo, but that it had not been clinically significant.

Hth.

Karen x

I have a similar story to you, Seaside Belle. I went to my GP with numbness on my left side. Was sent for brain scan same day. Scan was clear so were bloods. Went to see Neuro Wednesday who actually used the words MS. When asking about my medical history she seemed to think I had had MS attacks before and said the hospital doctors I saw, who diagnosed me with Labyrinthitis, were “not to know”. I had two bouts of Labyrinthitis only 6 weeks apart. They were horrendously severe bouts and I was bedriddennfor a week not able to eat or keep anything down. Could not walk for 2 weeks etc. Slow recovery then ‘BAM’ another bout just as severe. Also had a strange episode of having half numb head and face after a filling at the dentist about 18 months ago. Inside mouth and tongue felt like they were made of ice. Horrible feeling which stayed for weeks, possibly a couple of months.

Even though I know my symptoms are very ‘M’S like’ I was still excpecting it to be a long while before they used those words MS and I am due to have an MRI next month which will apparently ‘confirm’ diagnosis. I have had very few tests apart from usual physical tests, bloods and CT scan.

Neuro said its’ ‘very likely’ to be MS and started going on about meds etc. It was like she had made up her mind and I was just shocked to be hearing this so soon.

I went got outside and cried!

I hate the whole unpredictability with MS.

I am also aware that there are other conditions that present as MS that are even worse than MS! It’s a tough road alright :confused:

I reckon that I have had MS since 1989 when a numb hand made me turn vegie as I thought it was arthritis. Up until 2007; the symptoms came and went and I really didn’t want to know that it was a serious condition and my doctor certainly didn’t offer any suggestions. I think I was extremely lucky, especially that I was able to bring up my daugher with no problems (we both loved walking and cycling). I do believe it’s the luck of the drawer but looking after your health, eating well with a low fat diet and getting plenty of rest and not living a stressful life all helps you to stay well. Look after your health and I believe you could stay one of the lucky ones.

Take care

Wendyxx