What's the best course of action?

Hi. So I just wanted to share some experiences.

My step dad has MS, and a few months ago he asked me if I’ve ever been tested because my symptoms are apparently similar.

So here goes:

I’m a type one diabetic. I’ve been experiencing blurry vision which I’ve assumed is diabetes related. But my diabetic consultant said it isn’t diabetes related. I also have been getting tingly sensations in my arms, and sometimes they go really numb. Again I thought it was diabetes but apparently my pulse in my arms and legs are great and there should be no diabetes related damage.

Before being diagnosed with diabetes, they were investigating epilepsy because I would lose focus completely and be like I was in a different world. This was when I was about 17. They did a brain scan and found I have a benign tumour (now renamed a lesion) on the forth ventricle of my brain. Things never really progressed with that because I then got diabetes so everything else wasn’t as important.

About 5 or 6 years ago, I started to get pain in my head. It’s the trigenimal nerve and I was diagnosed with trigenimal neuralgia. The pain was immense and would have me in tears. But they found no damage on the nerve. I cut out gluten in 2013 because my doctor and I believe I am coeliac (I couldn’t stomach eating all the gluten I needed to to do the test so it’s not been confirmed). Cutting out gluten reduced the amount of trigenimal neuralgia attacks I have.

So then with the other stuff. I fall over a lot, even on flat land. People say I trip over my own feet but I’m not sure what it is. All I know is as soon as I start to go, I can’t catch myself. I just lose balance. I was referred to rhematology because of my joint issues and I was diagnosed with joint hypermobility. They said I have a very weak grip, very poor perception of where my limbs are, and difficulty with fine motor skills, which I have noticed has gotten worse.

I get cramps a lot in my legs, which I assumed was diabetes related. My arms and hands to numb and tingly which I also assumed was diabetes.

I’ve been finding I get weak. Like, if I go walking, afterwards sometimes my legs will shake uncontrollably for hours afterward. And I keep getting hand twitches which result in me dropping things and such like. That’s also become more common than it used to be.

When I see my rheumatologist, who I see every 6 months or so, I tend to just say ‘everything is fine’ and it’s a quick appointment.

I’ve also had blurry vision which I thought was a diabetes complication (I have one burst blood vessel) but I was told that the diabetic maculopathy is minuscule and wouldn’t result in and blurry vision.

My issues are this: I have so many things happening, that all seems unrelated, how do I know what is what? And I’ve had several people including my step dad with ms told me to see a doctor, but I’m going to be honest I’ve never actually say there and listed everything with my doctors.

So, what do I do? Am I just being paranoid? Part of diabetes means I am constantly aware of how I’m feeling. Like right now I can’t seem to focus at all. I really want to. I’m doing maths which I love, but I just can’t seem to get my brain to work.

I know something isn’t right. And I know that joint hypermobility doesn’t quite fit (although yes, I am hypermobile). So do I speak to someone? If so, who? I have a lovely gp. My next rhematology appointment is in February. And Should I record everything.

Does this even sound like ms? My step dad says it’s common to have lesions on the brain, and apparently trigenimal neuralgia can be an early sign. But sometimes I just feel like a hypercondriact.

hi holly

list every symptom with when they started.

pour your heart out to your lovely gp and ask if there could be an all encompassing cause.

you have a lot of specialists involved already but a referral to neurology would give you a full house.

meanwhile look after yourself

carole x


So I got to see my doctor today. She’s lovely. I listed everything and she said she is referring me to neurology. She suspects ms. She’s really lovely. And apparently there was a note on my file about the mass on my brain but no one has ever followed up on it or anything.

Oh luv, there is so much going on, no wonder you don’t know what’s what!

But I am glad to read your GP is on it.


Yeah, it’s hard to see the woods for the trees at times.

Thank you. I feel lucky to have a doctor who actually listens. I hear all sorts of scary stories of GPs who right their patients off as hypercondriacts and such.