Hi, I’m new to all this. So i’ll start from where I think it started and see where it leads me.
I started with a severe headache in November 2011, after 2 weeks I went to the doctors and he said it was sinusitus (I’m not the best speller in the world so please bear with me), and was put on antibiotics. The headache didn’t lift and I had my eyes examined - all normal. I went back to the doctors as the headache had been constant for 6 weeks, I was then referred to the Acute Medical Unit at the local A&E. I was sent for a CT scan and sent home afterwards, the results were inconclusive. I was then referred back for an MRI. This showed 2 lessions on my brain and I was referred to a neurologist at The Walton Centre in Liverpool.
I was finally sent an appointment in June and he did a series of tests, walking, reflexes etc. He then referred to my MRI and said “I would say that a female of your age growing up in the UK, that you have mild MS”. I’m not really sure how I reacted, but remember leaving the building and phoning my mum for some support.
I am now waiting for a lumbar puncture test (due to be done 13/09), I am very anxious as I don’t want to read too much into the causes, symptoms etc of MS in case the test comes back clear. Although I have a strong suspicion it will prove positive (if that’s the right diagnosis). The thing that gets me down the most is I still have this headache now. I am currently taking 30mg of Nortriptyline at night.
Does anybody know how long it will take before I get the results? Will I get a letter or will I be called back to see the neurologist? There are so many things floating round in my head at the moment I really don’t know what to ask.
My main symptoms are: Headache, numbness to little finger in left hand, loss of grip in left hand, loss of balance ocassionally.
Thanks for reading my ramble. It’s true what they say… It’s good to talk
Yes MS does cause headaches but they are far worse and constant with a complaint called Hughes Syndrome or ‘sticky blood.’ This complaint is very often misdiagnosed as MS; see http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736
Lesions also appear with this complaint. Please get your GP to do a simple blood test for APS Antibodies before your LP.
The Walton Centre is one of the best in the UK so I’m sure you’re in good hands and I’m making too much of things, but I have a horrible feeling that whoever you saw who mentioned MS may have jumped the gun. The criteria for diagnosing someone with MS is that they have had at least two attacks and that they have at least two lesions (at least one in at least two of four MS-typical areas) OR that they have had a year of worsening symptoms. From what you’ve said, you’ve only had the one attack? Also, headache is not a typical presentation of MS. Have your other symptoms been progressing perhaps? Sorry, I’m probably not helping here
If I were you, I would be tempted to ask to see a headache specialist neuro for a second opinion. Not only will they be able to investigate your headache from a different perspective, there are also more effective meds for headache than nortriptyline which a headache specialist would know all about.
Your lumbar puncture may be positive, in which case a diagnosis of MS is supported, but it is not a wholly accurate or specific test - some people with MS have negative LP results and there are other conditions that can cause a positive result. So nothing is cut and dried. To answer your questions, LP results can take quite a while (weeks, if not months, in some places). How you get the results depends on your neuro: some will send a letter and some will make you an appointment.
What I’m saying is that I think you need to keep an open mind. Clearly there is something going on, and that something may well be MS, but it looks to me like it’s a bit early to be sure.
I hope the LP goes well and that you don’t have long to wait for the results, and some answers. Let us know?
Sorry for not responding sooner. Unfortunately my dad was diagnosed with cancer yesterday, so wont be on here too much over the next few weeks.
In response to George i’m pretty sure I had tests for that 2 years ago as I also have Crohn’s disease and my white blood count was high. I remember the doctor saying something about sticky bood and tests.
Thank you Karen for your response. It has put my mind at rest a little. I did a some research on the doctor who mentioned MS and he is one of the lead consultants in NMO’s and his sub speciality is MS. Am I reading too much into this again? I’m sure you know where i’m coming from there?
I suppose i’ll just have to wait and see what happens.
Justt thought i’d update re LP, the results have shown oligoclonal bands in my CSF. I still have to see my neurologist for it to be rubber stamped and advise which type it is, but my GP has confirmed it’s MS.
So sorry you have now officially joined our happy band of msers. Hope you manage to come to terms with it without to much trouble, have you got someone who can support you through this phase, I do hope so as it is good to talk?
