Feeling a little less confident

New diagnosis and before diagnosis
1

Long story short, Optic Neuritis in October has resulted in blood tests, Neuro, MRI etc. All blood tests negative (good) and neuro exam ok.

I had a head MRI in December and had a follow up with the neurologist a week later (I was very lucky to be seen so quickly). The neuro said there were several lesions on the brain but that he was not too worried and has discharged me telling me there is a 50-60% chance I will develop MS in the next 5 years. He said I should return to my GP if anything changed drastically (I have some MS-type symptoms, but nothing life changing).

He asked if my husband and I were considering children (I am 27, married in May 2013) and he told me that ‘it’ shouldn’t affect our decision making process and that ‘the symptoms’ generally improve during pregnancy. He basically explained it to me as if I had a diagnosis. It concerned me, but I put it to the back of my mind as much as possible.

I left feeling a little unnerved but generally positive, but apprehensive at the sound of the ‘numbers’ he gave me.

I have since received the radiologist’s report which states there is at least one ‘suspicious’ lesion. I have tried to put this to the back of my mind as much as I can.

I received my CC’d copy of the letter he sent my GP yesterday. He explains that I have periventricular lesions and juxtacortical lesions. I have been doing some research and these seem to be consistent with MS.

As a bit of background, I am an accountant, so I like numbers and facts and information. My husband calls me an ‘information magpie’. I am not scaring myself by consulting Dr Google, I just want as much information as I can get. I don’t feel I am self-diagnosing, just trying to fill in the knowledge gaps. I just feel that the neuro is trying not to scare me, but really I would rather just know if my scans were indicative of MS. I know that my symptoms do not affect my quality of life, but I just feel that he’s not being completely up front with me and sugar coating things.

Sorry this post is so long, I just needed to say it. I can’t talk to my husband about it right now as I know all I will do is get upset. I can’t help it, I don’t feel ready to talk about it out loud. But I do feel that I can cope with more information than I have been given. The ophtho, the neuro, my GP, they all avoid mentioning MS. I just feel that with the ON, the MS-typical lesions and various other symptoms, I need to be realistic.

I think I need a virtual slap round the face to snap me out of it!!

PGxx

2

Hello PG

Reading through what you’ve just written, I think you’ve just answered all your own questions and given yourself a good telling off lol. I bet you feeling a bit better for writing it all down??

Look at ways you can improve your lifestyle.

There is some good research going on to show the benefits of taking vitamin D. Take a look at www.mstrust.org.uk have a word with your gp/neuro about it.

Take care

3

Hi x

My situation is very similar… I have some MS-type symptoms but, as you say ‘nothing life-changing’. I had head MRI done that showed several lesions. Neuro said they are ‘suspicious’ of MS, but, like you, my physical exam was pretty much fine (excepting slightly brisk reflexes, which neuro thought were more than likely due to nerves). He said overall he was not too worried about me at the moment, and diagnosed me with radiologically isolated syndrome. When I asked what the chances were that this might turn out to be MS in the future, he said between a 40% and 80% chance of that happening within next 5 years. So I am in a very similar situation.

I am waiting results of spinal MRI (had not had that done before) and also second brain MRI, to see if anything else shows. I have follow-up in May to discuss those results, and my understanding is that if nothing further has shown on the scans, I will probably be discharged back into care of GP and we will then take a wait-and-see approach. My GP is very understanding and informative (she did a stint in neurology dpt for a while), and has been very honest with me that at the moment they are all ‘sitting on the fence’ (her words) as to whether this is indeed MS. I said to her “If nothing else shows on scans, where do I go from here”, and she said “nowhere”. That sounds pretty harsh, but I appreciated the honesty, and she went on to say that she understood how difficult that must be, and that I could go and see her at any time to discuss how I was feeling about it, or to discuss symptom management.

I am trying hard not to self-diagnose or to assume / presume that I have anything that the evidence does not yet indicate. But I do sometimes feel that there are medical and scientific facts that would be helpful to me to have access to, and that I believe I am capable of understanding - if only I was given that information. My neuro’s advice to me was 'try not to think about it too much… try to get on with your life as normally as possible".

4

Hi Blossom and Pingu

Blossom - I definitely feel better writing it down. It feels as though it is all just building up in my head at the moment. I am trying hard not to think about it. I am impatient and the not knowing what will happen is killing me. I know that I should try to forget about it all and enjoy the life I have, but at the moment, I am struggling. I hope that I can become more level-headed and calm soon.

Pingu - it sounds as though you and I are in the same boat at the moment. I don’t have any more scans planned and I have been discharged by the neuro and by Ophtho so I feel a little adrift at the moment. I think I am trying to cling to information as that is how I deal with it. It’s the same way I dealt with my Dad’s cancer and my husband’s cancer too - I looked up everything I could. I think having some knowledge makes me feel a little more in control. For me, it’s also the suddeness of it all, I never expected any of it and all of a sudden, here I am with the knowledge that something could happen, but absolutely no control whatsoever.

I hope you get good scans and some answers in May and that you will be OK waiting until then. Your GP sounds very supportive and helpful, which can be hard to find

PG xx

5

What you have probably been diagnosed with is a clinically isolated incident (CIS). The MRI evidence has shown that lesions have occurred at the same time. You do not therefore statisfy the Macdonald criteria for an MS dx. Did you have a lumbar puncture? If that was negative for O bands then the likelyhood of getting MS is a reduced %. I read recently that there has been some evidence the the vacinne for TB has been shown to reduce the likelyhood of moving from CIS to MS. Trials are being done atm. Results look promising. If I were in that position I would ask for the vacinne.

Moyna xxx

6

Hi Moyna,

I haven’t had a lumbar puncture and I am happy at the moment to keep it that way :slight_smile:

I never had the BCG (Tuberculosis vaccine) as a child as ironically, I was off sick from school the day that they did them and I never followed it up. It sounds like now might be a good time to go and get it done. Will also have a read around for articles about the research too.

My Dad had bladder cancer and they injected a BCG solution into his bladder and that is what led to his recovery and remission. At the time, they didn’t even really know how it worked. But it’s clearly a little bit special!

PG xx

7

I’m scarred reading it and thinking about my family.