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Diagnosis wanted for so long until I actually got it

Evening everybody

As it says in the title really and username says it all.

6 years ago I started with neuropathic pain and fatigue MRI at the time of my brain was normal discharged from neurology. Symptoms between then and now but if I’m honest I had written them off as me losing the plot. fast forward to autumn last year when I had the most horrific bout of worsened fatigue, bladder symptoms and leg giving way. Bullied by colleagues into going back to gp mri of brain and spine showed lesion, lumbar puncture positive for oligoclonal bands gandolin enhanced lesion and moderate lesion load.

i spent so long wanting to be told I had ms so that I knew I was not going nuts. And now I have been diagnosed I want rid of it. Feel so low and cannot talk to family and friends about it as they are all distraught. Spent most the evening today crying. I just needed to get it out of my head and written down somewhere. I feel that I am spiralling to a place that is no good at all :frowning:

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Aw, poor you.

I think your feelings are utterly natural. You live with the unexplained for so long, putting up with random symptoms until you eventually can’t anymore. Then to get the diagnosis you kind of expected and might have even appreciated a few years ago just sucks.

You think before the actual diagnosis that to be told it’s MS would be justification for your symptoms. It would show you’re not going crackers. But what happens with the diagnosis is reality hits. Regardless of drug therapies or just the knowledge that your symptoms were real all along, the fact remains that you now have to live with something that is just not going to be cured.

Along with feeling this low, at some point you’re probably also going to get to the ‘furious anger’ stage of post-diagnosis. When you start being bloody angry, ‘why me?’, ‘it’s not *#@*¥ fair’, ‘why wasn’t I diagnosed x years ago?’ And of course ‘what now?’

Your friends and family will all be feeling upset with you and for you. Eventually people should start to get over their own feelings and start to be supportive for you.

Hopefully soon now you’ll also be given a decent disease modifying drug (DMD) which should reduce relapses and the severity of relapses. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid Once you are given the contact details of an MS nurse, you should be able to work out what drug might suit you, your lifestyle and your MS.

Best of luck.

Sue

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Thank you for your reply Sue it did make me cry that’s exactly how I have been feeling. I am sure many people on here either are or have come out of the other side. Partner is in total denial of what the future might hold which makes me worry long term about the relationship. Find myself questioning all sorts of things like should we have any children together, is it fairer to end the relationship now so that he can go on and live his life without me being a potential burden.

i work in health myself and reading around ms what I find most frustrating is the not knowing how it will all play out. I am sure I will work through what I can only compare to a grieving process and adjust to a new normal

i have an appointment with consultant next week to discuss treatment options I met the ms nurse this week who left me with some information. I am a super planner and had life all mapped out it will just require some editing now

Hi there ,

I was diagnosed last yr after yrs of symptoms and made to feel a neurotic .Don’t get me wrong MS sucks at times but it doesn’t mean life is over .Yeah you may have to re-adjust (and you will ).

It ok to feel grief

In the last 6 yrs I bet there have been times when you have felt crap but also many times when you get on with things and symptoms ease.Well nothing has changed that much except confirmed diagnosis and now you can think ms support and about treatment options .

Give yourself time ,Try to take one day at a time and think about your needs .I promise you its not all bad although it may feel like this at times .

Talk to your ms nurse or someone who you feel comfortable with .

Neuropathic pain and paraesthesia especially at night got me down but Amitriptyline meds helped .

All the best.

I’ve no sage advice or wonder statements that will hit the nail on the head with how you feel as I’m in the early stages of GP trying to figure out what’s going on with me. Heck… I’m even convinced that there is nothing wrong and this is all normal stuff I’m feeling. I’m a healthcare worker too and that sensible side creeps in but unfortunately with that comes crushing worry about how to manage the future when it’s so unknown. From reading your post, I think the way you are feeling is probably the way I will be feeling if diagnosed with anything. It sounds completely a normal reaction. I try focus on the online stories of people with MS that manage to still live their lives. I can’t remember which site has a ton of blogs but it is worth trying to read some and remind yourself that there are probably more cases where people manage to do ok. Between the internet and working in healthcare, you are mostly going to hear about the people that don’t do well and see it during the bad times. Use here to rant and rave about how angry/sad/in denial you are so you can try get some of it out. You may at some stage have to give some tough love to a close one and ask them to put their own feelings aside for a while to support you (sounds harsh but at the end of the day it is your life that will be affected most). In the meantime, make sure you take care of yourself by doing some of the things you normally enjoy no matter how small x

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hi there downinthedumps bless you. we all start there but you can learn to have a new life with MS. It took over 10 years for me to get diagnosed. I have had to wait THREE YEARS for my next neurologist appointment i was diagnosed 2016 February, and i am seeing my neuro finally on the 16th july 2019 for a catch up lol. THREE YEARS. in that time i lost my mum, and my beloved husband in 2017. I am still moving forward and no disease is going to get the best of me lol.

I do write a blog when i feel rubbish which helps. I believe we go through the stages of grief when we are diagnosed, and one of the ones we have to get too is ACCEPTANCE. Yes i know some people on here don’t agree well thats fine, as I dont agree with them either so we are quits. I wrote this maybe it might help you.(see link below).

The trouble with having MS is to be honest THERE IS TOO MUCH INFORMATION out there and some of it is plain scary.

Everyone is different with MS. There are different types too and all progress differently.

If you can have DMD (drugs) then go for it.

If you had been diagnosed with cancer would it have made a difference to your family or your husband? Having MS is not actually a death sentence. It doesn’t mean you will be in a wheelchair. It just means your life will be different as you have to accommodate the disease and work with it. Yes you life will change but then we all change with age anyway and so many people sick nowadays in actual fact i know more sick then healthy.

Don’t let the label rob you of anymore of your life. Hug your hubby and enjoy your lives that you have. I was laughing with my hubby on the 29th September 2017, and crying over his loss on the 3rd October 2017 holding him as he took his last breaths and left me. We have know idea what is in store for us, so dont focus on MS FOCUS on you and your family and just enjoy each moment with or without MS. I had no idea what was coming, as he wasn’t even really ill. He was my support throughout my journey with MS i never thought i would move forward but I did as i realised there was things still I had to do.

I am sending you a big hug.

If you feel like it, this is one of my blogs. Coping with a progressive and Chronic illness…… – My Journey with MS

xxxxxxx

great post DD.

The only problem with the label for MS it comes with no washing instructions lol. Nada zip. Its a label designed to change our life, I wish there was more positive stuff out there instead of all the DOOM and gloom of having it.

I have had 3 people pass away whilst having MS.

My sisters mother in law. She died with her MS AND diabetes she was a young women of 86 and had it for 40 years. RRMS

My husbands sisters BIL, recently passed away at 82, he had MS too for many many years RRMS died of pneumonia he had given up and told his wife it was time he left. He had a great life they were always going on cruises.

One of my friends was 72 she worked and travelled with her job she had RRMS too (her brother had it as well). Sadly we lost her to bone cancer, it was misdiagnosed as just an MS back ache. I miss her a lot as she was always so up beat and positive.

A lot of places on internet are so doom and gloomy about MS they see us as crippled wheelchair bound slavering jibbering wrecks. The only time i have ever been like that was in the 70’s lol after a great night out lol.

We need more positive vibes about MS. Yes its a horrible disease there is no denying it, but there are other diseases out there just as horrible. My SIL is barely walking now with his crippled feet from RA.

Just a little bit of positivity. goes a long way.

Lots of new research is going on every day, and i am sure one day they will find a cure. I hope so for all the people who will be coming after me.

MY LABEL.

WASH with care, IRON on cool for creases lol…and for goodness sake dont RING ME OUT. xx Use lots of comforter.

and do not put in the DRYER LOL.

Hi Everyone Yesterday neurologist basically told me that nothing was wrong with me. I’ve had symptoms for the last year or two. But looking back probably long before that. I have the numbness and tingling down right side legs and numbness in my feet. Also no feeling on my back . numbness and tingling in head and throat not to mention the horrendous stabbing pains like electric shocks mainly in head followed by numbness. Oh yes and in my arms and hands. Problems walking and problems with my balance. Nerve conduction study normal, multiple foci white matter on brain which she said was old age. I’m 58. I was expecting her to do lumbar puncture next. But she has binned me off. So spent all night lying awake and convinced my self at 3 this morning that there wasn’t anything wrong with me.Then I went through all my symptoms and thought yes I am poorly I’ve still got all these things wrong with me today. So am going back to my Doctor this week to get referred to another Neurologist because the last one was crap. She also said I see lots of people like you with your symptoms but thats not to say if you came back to me in 20 years we could probably tell you whats wrong. Long suffering Hubby is fuming at the way I was treated. Sorry to go off on one but have gone from upset to angry. But I read peoples posts who have had the same as me but not diagnosed for several years. Help Wilma

My neurologist said the same thing but he did some tests while I was there and said that my left side (where my hand shakes) was weaker than my right and that I will see him in a years time. I had a lumber puncture which was negative as well as my bloods. My GP when I saw him said that he was being careful, I don’t know if I will have the tests again. So here I am with a hip that kills, I have naproxen which works, shakes on my left hand and pain around my middle and a few more other things. I would go back to your GP and ask for a second opinion, as if it isn’t MS what is it? Good luck Kay

Hi Kay I think that because some days we look well people we meet don’t realize what we are actually going through. I went back to my g.p. on Thursday and took my Hubby with me. He has referred me to see an other Neurologist saying that although test were good because they rule out illnesses such as motor neurone I still need to know if this is the start of an illness. And if so i will be better prepared to manage earlier on. Also new Neurologist may have more answers. So feeling more positive today . Wilma