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Shock

Hi all.

I’m in shock. I have yet to see the neurologist but I have my MRI results to hand, and it doesn’t look good for me. I have lesions in the thalamus which is apparently rare, or associated with advanced disease. As well as in other places.

I’m currently on a mental health ward, but they are pushing for the neurologist to see me ASAP. They’ve told me all my mental health symptoms are likely due to the lesions. I’ve been in the system 8 years, and only now have they done an MRI. This because I developed severe nystagmus.

Im only 25 but it seems things are progressing at an alarming rate. My memory is shot to pieces. I don’t recognise some people’s names and faces, I find it hard to find words. My clumsiness has increased. I get splitting migraines every day. Pain relief does nothing.

Today I ache all over. My chest is tight. I was in A&E last night because I had severe palpitations and chest pain. They ruled out all immediate concerning things, but told me it’s likely because I have lesions in my brain stem. So…yes it could prove fatal.

Every day the nurses here update neurology, and still I’m waiting. But I’m a realist. I honestly don’t think much can be done anyway. I’m not sad, but that’s because my emotions are out of control. I have pseudobulbar affect so I just laugh uncontrollably. Which in my opinion, is far better than crying. I just feel bad for my family.

Hi,

I am so sorry to read your account of the last few years. It seems to me that to put you into the mental health category is just a convenience for the professionals, and doesn’t reflect the care and treatment that you actually need. In spite of your problems your intelligence shines through. You have expressed very clearly and succinctly what’s happened over the years and I admire that courage.

I can see why you have examined the possibility of MS but I can’t comment on that. You are very welcome to this Forum and I’m sure that there will be a few more to join me in showing you empathy for your story.

I hope that you get the appropriate treatment you need, and soon. You’ve been messed about for far too long.

Best wishes,

Anthony

Hi Anthony, Thanks for your comment. I am thinking MS more so because my great aunt had it. I am wondering whether my family carry a gene for autoimmune disorders. My mother has rheumatoid arthritis, and a sister of mine has a rare autoimmune eye tumour, and then there’s me looking like I have MS. The manager was here earlier and I heard him saying it’s ridiculous that I’ve been in the system so long and only now have they discovered this. I am in touch with my MP and have updated my CMHT as no one told them. They are in shock. Best wishes, Louisa

Hi LouLou, Ask your Neuro about APS, http://www.aps-support.org.uk/index.php Remember - it is NOT necessary to have all the symptoms to be diagnosed with APS. A constant headache is a giveaway, and yes it does cause lesions. Get them to give you Aspirin, 75mg; every day for 1 month; to thin blood George

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Hello Loulou

I’m not surprised you are in shock. And I’m really so very sorry that you’ve had to wait all this time to finally have a physical problem identified which looks to have caused your mental health issues over the last years.

Anthony’s reply to you really says it all.

I do understand why you are looking at an MS diagnosis. I hope that you don’t have to wait much longer to see the neurologist and get the actual diagnosis made. It is true that autoimmune disorders do seem to be rife within certain families. My own family can count a good number of AI disorders amongst us all, although I am the only one with MS.

I also understand why George thinks APS is worth considering. But to be honest, in your situation, you need to speak to the neurologist before looking in detail at any single diagnosis.

Hopefully you will have that conversation with the neurologist as soon as possible.

In the meantime, feel free to continue talking with us. Your fear and worry is radiating from your initial post. We are all happy to listen and give you whatever support you need.

Sue

lou

stay strong sweetheart.

your nightmare run is almost over.

if the neuro DOES diagnose ms, then there are a range of DMDs that could be offered.

if it isn’t ms, then the neuro ought to chase up an alternative diagnosis.

to me, the thought of being in a psychiatric institution fills me with horror.

my son spent time on the psych ward a couple of years ago and it almost broke me.

so feel a sense of achievement for having survived it.

sending waves of love

carole x