Not yet diagnosed but really need advice........

New diagnosis and before diagnosis
1

Hi everyone,

Please could you read my story and tell me what you think. I am a 38 year old female.

I awoke one morning in August of this year with numb legs. I arranged an appointment with a private consultant neurologist as my GP said that going through the NHS route would take weeks. My initial appt was private and he then changed me to NHS as I don’t have insurance and not much money either! At the inital appointment he checked my eyesight, gait etc and said that they all appear fine and that my issues are sensory. He asked about my bladder control etc and that is fine. I have always had a weakish kind of bladder but never any urgency etc.

I had an MRI scan 6 weeks later and the results showed a lesion on my brain and spinal cord and he said that the lesion on my spinal cord was probably the one causing the numb feeling in my legs. During my appointment, as he was showing me the scan pictures I was actually reading the report that the radiologist had written that was underneath the pictures and I saw the words ‘consistent with multiple sclerosis’. He said that this is a Clinically Isolated Episode of Demylenation and that he would run blood tests. I went away initially feeling good as it wasn’t a tumour or anything but then the paranoia set it.

I called him a few days later as I was so anxious and asked him to be straight with me as I couldn’t stop seeing the words ‘consistent with MS’ in my mind. I asked, "do you think that this will turn into a diagnosis of MS?’ and he said that he feels I am low risk and that my chances of it are probably around 15-20%. He said that the radiographers comments about being consistent with MS are to be taken purely in a clinical context and that other factors have to be included. I felt a little better after the phone call.

I received a copy of my blood tests, B12 was normal, U&E’s (?) were normal, auto antibodies were negative along with other normal stuff but my vitamin D is low at 15.9 so I have been prescribed 20,000 IU’s twice a week. I have to say that since taking the vit D supplements I haven’t felt as well as I did.

He still thinks I am low risk but everything I have read on the internet is scaring me, that CIS with lesions is high risk, that low vit D means MS. I have also read that having an issue in both legs means PPMS. I have had no weakness in my legs and they are nearly better, when I am scared or anxious I feel like there is an electrical current running through my body and this scares me but when I am not scared I don’t feel that much at all.

I wasn’t supposed to see my neurologist until March but he is now seeing me in January so that I can address my concerns but I wanted to know what you people thought. I know that there are no guarantees with regards MS but I would appreciate your honest opinions. I have to say that I really like my neurologist and he always tries to see/talk to me when needed.

I know this is long winded but I am scared to say the least, my fear of this is taking over my thoughts and I would really like to het a handle on it. I appreciate any responses.

Many thanks.

2

Hello Fazza,

I’m sure you already know this, but worrying never helped anything - what will be will be. You really have to try to trust that when your neuro rates something as “unlikely”, he knows what he’s talking about, and it means it IS unlikely. They’ve seen a lot of cases, and although nobody can predict the future, they probably have good intuition for which will turn out to be problematic, and which won’t.

I may be able to say a couple of other things to reassure you, though:

First, low Vitamin D is NOT a diagnostic indicator for MS. A lot of people with MS do have low Vitamin D, but so do a lot of otherwise healthy people. It’s not proof of anything one way or the other.

Secondly, having an issue in both legs does NOT mean you have PPMS. This is explained quite simply by the fact you have a lesion in your spinal cord, which you already know about. Although it is possible for them to affect one side more than the other, spinal cord lesions typically affect BOTH sides below them. Your spinal cord is only about as wide as your thumb, so there’s not much room to have a “good side” and a “bad side” - unlike the brain, where right-sided lesions tend to affect the the left side of the body, and vice versa.

Spinal cord lesions are not exclusive to any one type of MS, so having one is not indicative you either have, or are going to develop, PPMS. On the contrary a good recovery so far makes PPMS very unlikely, as it’s not usually associated with any recovery at all - just continuous deterioration. So I’d place bets on it that someone who’s got significantly better isn’t going to be diagnosed with PPMS at any stage, even if they did go on to develop MS.

Please try to stop Googling and scaring yourself. Or, if you must research it, stick to reputable sites like this one or the MSTrust, as frankly, there is a lot of bilge online about MS. If you’re not picky about who to believe, you can end up filling your head with a whole load of rubbish, that causes needless anxiety.

I’m not saying MS isn’t a scary thing, because it is. But there’s a lot of stuff out there that just isn’t right, so don’t believe everything you read.

Hope this helps,

Tina

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3

Hi Fazza

Welcome to the site. Tina has given you some excellent advise. I think unfortunately seeing those words MS has got you into a complete panic. Please don’t google as this will only add to the anxiety and sometimes this can manifest in strange symptoms.

The reality is that there is a chance that this could develop into MS but that chance is v small. Nobody is going to be able to predict for definite what will happen. Even if it does become MS you maybe symptoms free for months or even years and years. It sounds like you are unedr a good neuro who is on the ball so please take his advise. Stop worrying about what if and enjoy what you have now. No matter how much worrying you do it won’t help or chnage whether this ends up as MS.

Good luck and remember you are in good hands and you always have this site here to come to if something new should happen.

Reemz

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4

Hi Tina & Reemz,

Thanks you so much for taking the time to respond, it means a lot to me.

I am going to heed your advice and stop searching on the internet as I know I will keep finding things that make me think ‘have I had that?’ or ‘what if’…

I am going to see my neuro on the 3rd of Jan. I will address everything with him and trust what he tells me as I do not want a life where I am contantly analysing what is going on with my body and searching for answers that I will never get.

Once again, thanks so much. It is nice to know that this forum is here.

Happy Christmas and have a fab 2014.

Helen x

5

Helen, I say DITTO to everything Tina has said.

Please don’t worry, you might be right as rain and never have a reoccurrence.

Good luck & Happy Christmas :slight_smile:

Sonia x

6

Happy to help.

Happy Chrsitmas and New Year to you too.X

Good luck with the January appointment!

Reemz

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