Am off 2 c the neuro 2 get results and find out if he is willing to diagnose me or not. Have really mixed feelings. Want a dx but don’t want one. He has said all along that I have a very mild ms with more sensory problems than motorized ones. And he always tells me I haVe the easy side. I feel lucky not to b suffering more but am still suffering in my own little way. Have been getting twitched spasms n cramps lately but thinkin he is just gonna disregard them as nothing compared 2 other ms sufferers. I know he is right but just wanna move on aNd think a dx wld help me with that. Sorry - just moaning and saying what I can’t say 2 those around me. I"m off now.
Hey totallyflipped
I understand how you feel. My symptoms compared to a lot of people are no where near as bad, I’m mobile, work and can do most of the things I still like with pacing and I’m undiagnosed. My first neuro has been pretty much brushing me off and wouldn’t give meds to help me either. He thought I’d had a ? epsiode of spinal inflammation.
Like you I’m very very thankful that things aren’t worse than what they are. But I’m 29 and looking at other 29 year olds who go out and have fun, and don’t have to pace sometimes I do feel sorry for myself. I’m not that normal 29year old. When I look at people complaining about a cold I think to myslef count yourself lucky and stop moaning.
But really one persons molehill is another persons mountain. Just because your symptoms are insignificant to someone else doesn’t mean they’re not significant for you. I now allow myself to grieve and feel sorry when things get really bad but it’s important not to be wallowing in self pity that you forget the things you can still do. It’s a balance I guess.
Good luck with your results let us know how you get on and whatever happens I hope you get the support that you need from the neuro.
Reemz
X
Thanks gokr. U summed up how I feel. Am in waiting room now. Will post later. Tf x
Well, Scans showed that I have had two more lesions and that two of the three previous ones have faded and are fixing themselves. My lumbar puncture came back with small signs of MS.
Neuro feels that, as I have had no NEW relapses (not just these symptoms - pins and needles, buzzy crawling sensation all over body and tired eyes) that are “of significance” then he would prefer not to give me a dx yet. He says that, if I were in the US then I would be given a dx and put on dmd s. However, he feels that this is really MS at its mildest and that it would seem counterproductive to put me on DMD s now when I haven’t had a proper relapse yet. This does make sense. He said that IF I get a relapse (and he seems to think there is only a very slim chance of this) then I can contact him and he will give me a dx. otherwise I will see him in 6 months.
He thinks that the symptoms I suffer from could go on for years or go away tomorrow.
The real good news is that he has referred me to an MS nurse who I can talk to and contact if I have any concerns before my next neuro appt. This has put my mind at rest a little and not made me feel totally disregarded.
I explained to him about the random achy/pain that I keep getting in different parts of my body. He kinda laughed and said “this is nothing to do with MS” … okay - so I will ignore them then.
So - I am still in limboland but with a foot firmly in the door of MS. I have MS nurse support without having the label. That’s gotta be a good thing right?
I suppose I’ve got to stop thinking about a diagnosis and just learn to listen to my body. Stop waiting for it to fall apart and learn to live as full a life as possible but knowing when to stop and rest, rather than power through (my previous MO).
I feel a bit deflated - and I have no right to do so. So sorry for ranting on - I guess I’m just talking myself through it really. I’ve always considered myself to have a charmed life and to be lucky with what I have and even now I am lucky in having the “mildest form” of MS.
TFx
Hey TF
Thats great that he hasn’t fobbed you off and you have access to the MS nurses and at least you know most of your symptoms are most likely because of MS. Its bitter sweet - I guess on one hand we want a firm answer so you can give things a name and learn to deal with it but on the other hand dealing with it is so scary.
My neuro was terrible and when I told him about my back/shoulder he said it was age related. I had what I considered 2 new things happen since my first episode in oct after (I had the hug and ?TN) but he just brushed it off and said contact me if anything new happens but whats the point when he doesn’t do anything. I just didn’t like his attitude. It sounds like at least your neuro has taken things seriously. My first neuro has given me access to the MS nurses (I don’t have a dedicated one) though he’s not sure I have MS but this was after me pushing for help. He’s not sure of much really! I’m going for my second opinion next wednesday so I’m hoping I might get some more answers there or at least a more supportive neuro.
I’m sorry you’re still in partial limbo. Like you said I guess we have to get on and try and focus on what we can do and hope that in time we get the answers. It doesn’t make it easy though and don’t feel bad about being defalted. No one wants to have MS but what most of us do want is a name a reason for why we feel so crap and why our bodies do things that they shouldn’t. No matter how bad - its easier facing something over time when we know the cause than battling against something unknown and worrying about what if.
Go easy on yourself. Try and pace as you’ve said with the knowledge that IF anything new happens you have the backing of the MS nurses and a neuro that is looking to diagnose.
Reemz
X
Sorry - about to have a bit of a rant. It’s not aimed at you, and I’m really sorry in advance if it upsets you at all.
NO! It is NOT a good thing!
Is this neuro an MS specialist? If he is, how old is he? I know this might seem a strange question, but it is not current best practice not to diagnose someone just because they have milder MS. In fact, it’s plain daft. How are you supposed to get the right level of support at work without a diagnosis? How are you supposed to explain things to other people? “I have MS, but they won’t diagnose me”?! How are you supposed to explain to insurance companies (e.g. what happens if you are abroad, have a relapse and have to have hospital treatment? Are the travel insurance people going to cover something that you couldn’t disclose beforehand but knew? Are they heck!)? Do you have a critical health policy? - because if you don’t claim within a certain length of time you will lose the chance to claim at all. How is your GP supposed to prescribe the right meds for you without a diagnosis? (OK, MS nurse guidance, but the PCT will not like it at all.)
What on earth are “small signs of MS” from an LP? It’s either positive or negative. That’s it.
And MS DOES cause pain! It is an antiquated idea that it doesn’t!
And did he call it the “mildest form” of MS? There is no such thing! I know people who are terribly disabled with RRMS and people who are not bad at all with PPMS.
Sorry, sorry, sorry, but I think you need to ask for the diagnosis to be formalised, or get a second opinion. There is no benefit these days to not having a diagnosis.
Karen x
THanks Karen. I hadn’t looked at it that way.
He is an MS specialist, probably mid 50s.
Maybe I paraphrased him or just heard what I wanted to hear.
Re: “mildest form” He said MS can affect the body in two main ways - 1) sensory and 2) motor.
He said - in his experience, people who present themselves as I do (with sensory effects at the start) rarely go on to develop the Motor side of MS. He thinks there is a slim chance of that happening in which case this would be Benign MS. Iwondered what others thought about this? HAve other people started with sensory symptoms and gone on to motor?
He also said it was up to me - that I should do some research, talk to the nurse and see how I felt about it but his advice was not to rush into anything.
Thanks for the advice - I will talk to the MS nurse about it and see what they think.
Yes, MS can be sensory or motor, but I know plenty of people with both. In fact, I don’t know anyone who’s had MS for a while who only has one.
Even if one side dominates (which tends to be true), mainly sensory does not necessarily mean mild. Sensory problems include pain, numbness, vision problems and fatigue - so someone with “only” sensory symptoms could be in agony, a danger to themselves around sharp or hot objects, never mind unable to walk well because they can’t feel their feet (etc), blind in one or both eyes and permanently exhausted! OK, so that’s an extreme example, but I would say that my MS is pretty mild and it started out as completely sensory, but I have an EDSS of 6 (I need to use a walking stick), I get high rate DLA and I am medically retired from work. To be fair, my mobility and strength was excellent up until 2010, but they aren’t now.
Benign MS is a stupid, but still official, type of MS meaning someone who recovers well from relapses and has no significant mobility problems after 15 years (although the number of years varies depending on who you ask). I know someone who has benign MS. He cannot work and is in the support group for ESA because of debilitating cognitive and continence problems. His motor system is largely unaffected, but he can’t walk well or far because of terrible pain in his feet despite max level painkillers and he is seriously limited in what he can do because of numb hands.
I don’t want to scare you here, and there really is every chance that your MS will be mild and never much affect your motor system and you will be really well, but I just don’t see any benefit in not being diagnosed. (I also reckon the DVLA would want a word or two with your neuro!) It’s not like you have to walk around with it tattooed on your forehead 
Of course, that’s just my perspective and not everyone will agree with me. Ultimately, you should do whatever you think is right for you - I guess it’s nice to have the option
Karen x
Hi Totalyflipped
I was diagnosed very recently and my neuologist was very quick in giving me a diagosis despite my symptoms being mild. As with what Karen says - you do need a diagnosis as there are things you will probably need to change in your life (eg. infoming the DVLA of your condition). I’m chamging the way I live - resting more and just generally giving myself a break.
I’m surprised your Dr was so dismissive - esp since it takes so long to get an appointment. Also - as great as the advice is on this site - there are far too many armchair experts out there in general on the web for you to safely and helpfully do your own research.
My MS nurse did give me lots of useful leaflets - so maybe your MS nurse will be able to help.
Take care.
Fade
Hi Totalyflipped
I was diagnosed very recently and my neuologist was very quick in giving me a diagosis despite my symptoms being mild. As with what Karen says - you do need a diagnosis as there are things you will probably need to change in your life (eg. infoming the DVLA of your condition). I’m chamging the way I live - resting more and just generally giving myself a break.
I’m surprised your Dr was so dismissive - esp since it takes so long to get an appointment. Also - as great as the advice is on this site - there are far too many armchair experts out there in general on the web for you to safely and helpfully do your own research.
My MS nurse did give me lots of useful leaflets - so maybe your MS nurse will be able to help.
Take care.
Fade