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Advice/support please

So. Optic neuritis just before Christmas and about six months before that an episode of double vision. Late January I had an MRI scan but then my Dad died so I didn’t think about anything else for a while. I think they lost my notes because there wasn’t any follow up so eventually I called and made an appointment. On Friday I repeated my medical history (no notes, different doctor) and was then told there were lesions, including on my brain stem, and I was very high risk for MS. It was weird seeing my brain up there on screen and knowing there was something wrong with it.

I’ve also been having headaches, and I didn’t think had any pins and needles but I seem to have them in my left foot today, but maybe it’s just the way I’ve been sitting. About a year and a half ago I had them in one of my hands, for a couple of hours. Maybe it was my hypermobility. Suddenly everything feels like a symptom.

I’ve been having headaches, just a dull kind of pressure behind my left eye. I thought it was a sinus thing, I don’t know. Painkillers don’t touch it and it’s not like it’s bad, but it makes me irritable and I can’t focus on work as well. If I can get any mucous out it does seem to relieve the pressure. Mostly I feel bunged up but my nose is clear.

So the thing is, Mum didn’t want me to have the MRI. She didn’t understand why I would want to know my level of risk. She’s visiting (she lives abroad, as do my brother and sister-in-law) this week and I don’t really know if/what to tell her. She’s not mentioned my health situation since the MRI and last week talked about me being so healthy. It’s like she’s blanked it. I don’t think she wants to know.

Dad was a 30 year + cancer survivor until it finally got him in the end, he was so brave and stoic. I wish I could be more like him and I wish he could support me in this, because he’s the one I need, not Mum. I don’t want to hurt her. I’m scared, and sad, but I have wonderful friends who are supporting me. I thought I was coping with the grief but it’s hit me like a sledgehammer this weekend.

So I’m waiting for the next referral to come through to find out the next steps. Blood test I guess. I’m even terrified of needles. I don’t know how Dad managed all the medical stuff so well. He had 18 general anaesthetics.

I’m healthy. I have hypermobile joints and have had difficulty walking and writing in the past, but learned how to manage it with physio and exercise. I never thought I could but I ran a half marathon last weekend. I eat way more than 5 a day, lots of eggs, oily fish, nuts, fibre, no meat. Basically a textbook anti-inflammatory diet and it has worked as far as the hypermobility is concerned. I’ve never smoked. I’m pale and have always stayed out of the sun but since I’ve been running I’ve been out in it a lot more (I keep getting sunburned now, oops).

And oh, I’ve had concussion a couple of times in the past 2-3 years. Didn’t seek medical help because I’m a numpty.

I’m trying to buy my first flat (applying for a mortgage) and it’s very stressful. And now I don’t know if there’s any point getting income protection insurance.

Sorry for the essay. I just don’t know what to do/say/expect.

Sorry to hear all your troubles, and very sorry about your dad. Try to give your mum a break, as I am sure she will suffering as well as you about the loss of your dad. Pleased to hear your friends are being supportive you will need it. There’s always really good advice on here, but unfortunately I’m that good at it. Take care.

Thanks, I appreciate it. Yeah Mum is using about the same coping strategies I use - throwing herself into other things and keeping busy. She wants to meet other widows so there are people who understand what she’s going through. I guess that’s what I’m doing here.

One of my friends works at the hospital so after seeing the doctor the other day I got her to meet me for coffee.

I am a lot like my Dad, I think I just need to keep becoming more like him!

I wish I had a partner though. I’m dating at the moment but if it got serious with anyone I’d have no idea what to say, or at what point I ought to bring it up.

Checking back in to say the pins and needles are continuing, in my hands and feet. It’s worse when they are cold. A friend once told me I have Raynaud’s. I thought everyone got numb/tingly hands and feet when they were cold but she said they didn’t - I never knew! However this has lasted longer than it should so I don’t think it’s Raynaud’s (if I do in fact have it).

I have been burning the candle lately so I know fatigue could be a factor, and my hypermobility symptoms are worse as a result - for example, my left foot turns in quite dramatically when I am tired. I am also less good at regulating my temperature. When I am fighting fit and well rested my body is always a comfortable temperature.

On top of it all I may be pulling out of my flat purchase. The mortgage was approved but my lawyer has discovered there are major works due and I’m not sure if I should try to renegotiate the purchase price or start again with a property that looks like less trouble (if I can get an offer accepted, which is not easy here in London).

And with my uncertain health situation, am I completely crazy to be thinking of buying a flat? I suppose we all need somewhere to live. My family is on the other side of the world and I don’t want to leave London. I just worry about what will happen if I have a rapid decline. And also trying to get insurance lined up before any diagnosis (I have told the broker about the MRI - he said they will want to write to my doctor).