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My mum had ms and now they think I could have too

hi guys I haven’t been on for some time. I was a career for my mum who had ms and passed away in July at 47

Two months after she passed my muscles and my vision started to play up a lot twitching and jolting and a lot of pressure in my eye my opticians asked on my eye test if I had any neurological issues or family members… shock and panic I paid for a privet mri as I passed all my neurologist tests apart from brisk reflexes.

They found brain lesions in subractinal region of the brain multiple scarring. I was diagnosed and sent to dr Malik which I’m sure some of you may know he believed it was not ms and perhaps lupus sent me for all tests and all came back negative including the lumber puncture all ana blood work etc.

My pet scan showed inflamed lymph nodes in my neck and ovaries

also my Oesophagus was inflamed thought.

My my muscles are going crazy and my face has so much reassure in it.

I do get pins and needles and headaches a lot.

Im tired a lot and feel as if I have flu a lot too.

I am 29 years old and really worried I don’t want to worry anyone with my mums story as that’s not helpful however I can’t I see what I see. I have three small children and worried for my future any advice would be great my neurologist thinks I will be fine but I’m sure more is going on as he keeps chasing his mind xx

Hello Jade

You must be feeling really quite scared by all of this going on. Especially as you only lost your mother last year.

Your test results sound a bit all over the place. Mostly negative, which is good. I’m not sure what you mean by ‘lesions in the subractinal region’ though. Are they demyelinating lesions? If the neurologist has declared that it’s not MS, then coupled with your test results, chances are, it’s not.

And you also know it’s not Lupus.

Have you heard of Functional Neurological Disorder (see: What Is FND - FND Hope International )? You could discuss that with your neurologist. Or you could ask to be tested for Antiphospholid Syndrome (see: Antiphospholipid syndrome (APS) - NHS ). Or maybe talk to your G.P. about what else could be causing your symptoms?

Hopefully you can pin the neurologist down on exactly what s/he thinks is wrong. And soon.

Best of luck.

Sue

Hi sue I think I spoke with you when my mum was poorly :heart: So thanks for responding to me again

yeah I know all my tests are negative but something is going on I’m not that worried about ms tbh all I want to know is what is it and how do I treat it to try avoiding going like my mum for my children sake.

Basically my lesions are in the wrong area of the brain which is what he made it think it’s not ms. My muscles in my face and all over twitch even in my mouth. How are you xx

Hello again Jade

I can’t imagine experiencing symptoms that seem like MS when you witnessed your mothers end stage MS. (Sorry, I only now just checked back on your previous posts and saw our previous communication.) And having children too is worse still, partly because you know how it affected your life, having a mother with severe MS.

But, do remember that times have changed. So there are disease modifying drugs that can change the whole pattern of MS. But that’s if you do indeed have MS.

Oh I do hope you find out what’s causing your symptoms. It’s not bloody (I would use a stronger word, but it would be moderated out!) fair that you have all this facing you now after having spent most of your life watching your mother sink beneath the waves of MS.

My thoughts are with you. I can’t think of any other ways for you to approach the problem of dealing with the diagnosing of your symptoms. I’m sorry.

Sue

Hi sue I have written a reply 3 times and it’s not working so I’m just seeing if this goes through

Of course it did…

I basically said you are right and I am not as worried as I should be. Time has changed and I hope so much for everyone that ms isn’t what it was I do believe we are close to a cure. I pray anyway.

What are your takes on stem cells treatment ?? Xx

To be honest Jade, I don’t really know enough about stem cell treatment to have an informed view. I believe the HSCT protocol has been helping a lot of people, but really you’d need to do a load of research, and hopefully get to see someone in the U.K. who is doing HSCT. There have been threads on the subject on the Everyday Living part of the forum, so you could search the older threads (using the ‘search’ box just above the list of threads) for people’s views.

I’m glad you’re not too worried. That’s the right attitude to have really. What will be will be, and getting into a panic over it won’t help and could make things worse.

Sue