Hi, I don’t know where or how to start but will try as things are a bit up in the air at the moment so please bare with me.
I am a 36 year old mother to 2 children and work full-time.
I had a tonsil/neck MRI in October 2016 requested by ENT as I have a separate issue with my lingual tonsil. At my results appointment the original issue was discussed but my consultant told me there was a note on my report saying a bit of my brain had crept in and shown abnormalities and looked older than my age with white matter so I had to get a brain MRI done a few weeks ago.
Fast forward to today and I have been told by my doctor that I have been referred to a Neurologist as there is 2 parts of my brain showing damage (myline sheaf or something that sounded along them lines and can’t remember the other, sorry) which is characterised by MS so further investigation need done and to talk with the Neurologist. I had been given an appointment with my ENT consultant on 1 March but this was to just let me know what my doctor told me and that I had been referred, it was just chance today that I had a doctors appointment. He has said he will let ENT and Neurology know that I have now been told.
This has been a bolt out of the the blue, but now I am thinking more and wondering if signs were there but I just didn’t associate.
The last few months I have been physically beyond tired, cloudy heads (but I’m a migraine sufferer since before 3) and my right leg had/does have a tingling sensation that feels also like a tight muscle which I put down to a trapped nerve.
I have not been diagnosed and won’t know anything more until I see the Neurologist, but really just needing to talk to people that could give me some insight? Everything is whirring through my head at the moment and I wasn’t sure whether to come here before I know for sure but would really appreciate to hear other peoples experiences or advise at this time of the unknown?
Thank you again for reading this and any advice would be greatly appreciated.
to prepare for your appointment, organise your symptoms in note form - which appeared first, when it appeared, if and when it changed or went away.
think about the Disease Modifying Drugs as if/when you get your diagnosis you may be offered to start the DMD of your choice although ths can be something of a postcode lottery.
arrange for someone to accompany you to act as a prompt so that you don’t forget what you want to say, and to help you remember what the neuro said.
learn how to relax (not easy with a full time job and 2 children) because stress makes everything worse.
mindfulness medititation is an excellent tool for this so if you could find a course doing this - do it!
expect a positive outcome, with a back up plan if you don’t get this.
best of all, enjoy lots of cuddles with your children
it is difficult when trying to deal with the unknown but try not to use too much energy on speculation or getting angry or upset. Whatever our condition we all need to save our energy for the important stuff. For any condition it can be useful to build a support team of friends family and professionals. If you have enough info you can work out if the professionals are giving you good support. You should also bear in mind that you are the expert when it comes to how you feel.
I thought I was having a relapse when my vision briefly changed, this turned out to be a painless migraine so I learned yet again that not every symptom I have is related to my condition.
Thank you Carole and Mick for responding and your kind advice.
I will be sure to write things down for appointment and questions. My mum is going to come with me for support and someone else that may remember things said after we leave.
It all feels a bit surreal today but now I am becoming aware to stuff that’s been happening to me that I didn’t pay much notice to before and so writing it down to ask. For example, today I was doing dishes and my arms got a heavy weak feeling through them which I have felt before, but it dawned on me that maybe it’s a symptom and not thinking I must be a bit run down as I did before. I also get experiences of my legs feeling like they have lead weights on the end of them at times but again never thought anything of it.
Because I am at the unknown stage until I see neurologist I am maybe over analysing things.
Mick, has your migraine attacks taken a different form? The reason in which I ask is I have suffered migraine with aura since I was 4. I have been on beta blockers for the last 6 years for prevention but the odd one slips through. Last year my eyesight went like a prism for about ten minutes and then I felt the effects of an attack without the pain which I have never had in that way before.
A year and a half ago I had been admitted to hospital overnight and got a ct scan. I had been unbalanced and dizzy for a week so went to the doctor. She told me to go to hospital as she suspected Bell’s palsy as she said one side of my face looked droopy. Anyway to cut a long story short it wasn’t Bell’s palsy not stroke and was put down to Labrynthitis. It took about 3 weeks to get over it. But now after reading up I wonder if this too was maybe a sign and so will speak to the neurologist.
sorry to have gone on a bit, just things now coming to light as to why there is damage in brain.