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Just been diagnosed - need a pep talk!

Hi everyone, My first post here. I’m a 38 year old male and I have just received news that the results of my recent MRI scan indicate that I have a few lesions on my brain. The neuro-ophthalmologist who sent me for the scan (as I was getting double-vision problems) suspected I have MS and apparently this confirms it. I am making an appointment next week to see a neurologist to discuss it further. Bit scared and also annoyed. I only took up running a couple of years ago and love it. I was never a sporty kid and now fitter than I have ever been. I need a pep talk please! I do believe that exercise is really important, so probably a good thing I’m into running in a way. Just scared of what the future holds… Been a bit of a shitty year truth be told. My mum died of breast cancer back in March, and my son (my 2nd child) was born with DS last year. Love him to bits but dealing with the whole thing that goes with that. I’m generally a positive person, but literally just received the results a couple of hours ago so a bit down. Positive thoughts please peeps :slight_smile: Ali.

So sorry you are having such a rough time of it.

As far as pep-talks go:

(1) You will find a lot of really supportive people on this forum, and lots of good information too.

(2) You are in shock now, it will take a while to sink in. Allow youself time to process your feelings.

(3) Not everyone with MS becomes severely disabled. It really does run the gammut from very very mild (some people have very few problems) to more severe. Most people with MS are not as severely impacted as you might fear. Try not to get too focused on pre-conceived images of what you think MS wil be like. This is easier said than done, but gets easier with time.

(4) The MS Society and also the MS trust have really good helplines if you want to talf things through, and also provide a really good range of information resources (free booklets that they wil post out, downloadable info etc). But read through it at your own pace.

(5) . Your post doesn’t make it clear who confirmed you have MS; you have only said that your MRI showed lesions, which you said ‘apparently’ confirms it. A word of caution here; if you were told you have official diagnosis of MS in the letter, or you were told by a doctor that you have an official diagnosis - then definitely consider yourself diagnosed. But if not, it might not necessarily be the case that you definitely have MS. You said your test results showed lesions on brain, but this does not necessarily lead to a diagnosis of MS. What can sometimes happen (this is surprisingly common, actually!) is that patients have abnormal scans suggestive of MS, but have to wait for more tests before official diagnosis is made. I am not sure how relevent this is to you, as like I have said I don’t know your particular circumstances - so sorry if I’m confusing the issue here and you have been given a ‘definite’ diagnosis already; I just thought it was worth mentioning).

(6) You have a neuro appointment coming up soon and they will give you all the information you need, so you will have good support and care.

(7) Remember that you will get through this.

Big hugs xxx

PS: having a diagnosis does not mean you have to give up the things you enjoy doing. So keep on running! :slight_smile: x

Hi Just to add after a period of double vision & pins & needles. I had a brain MRI and spinal MRI both showed lesions but neuro didn’t DX me, have since had EVOK tests,lumber puncture,ct scan and still awaiting DX Sorry if you have had official diagnoses ,but if not just the MRI results may not be conclusive Take care Gray

Excellent advice from the other posters, just wanted to wish you all the best, I’m a runner too and like you only started later in life, I still run when I can although heat makes my symptoms worse, I find wearing light clothing and sticking to shorter runs works best. Best wishes, Lucy x

Hello Ali. Anon as answered your question so I just want to say welcome. There are lots of friendly people on here always happy to chat. Have a look on the every day living link as well.

Your having a tough year. Try and stay positive…keep running

Thanks for your replies :slight_smile: Nothing has been officially stated, so yes I am maybe jumping the gun a little. It was my neuro-ophthalmologist who checked my scan results. He recommended I made an appointment with a neurologist, as he felt he wasn’t qualified to discuss in any more detail. I actually initially went through the NHS and it was the ophthalmologist there that wanted to rule out MS. I then decided to go private and after some further eye tests the neuro-ophthalmologist said he was 90% certain it was MS. For what it is worth I have had a two year history of problems with my eyesight, but never double vision. This has since cleared up. Yeah I just need to keep my chin up and stay positive. My wife and family are being super supportive, so just need to see what the neurologist says. Thanks again for your comments and kind words :slight_smile: Ali.

Oh …HELP ME!!! Tell me what is going to happen to my son!!! I know that’s a stupid thing to ask…but …he’s has had loads of tests and a lumbar puncture etc and by a process of elimination his neuroconsultant believes he has MS. We know he has several lesions, he is getting headaches and constantly feels dizzy. I’ve googled all the MS info sites and all I’ve found out is that everyone is different, and has different problems. I’ve never subscribed to a chat room before, but that shows how bewildered I’m feeling. I try to be upbeat with him and point out the positives, he is still managing to do some work remotely from home…but all the time my brain is asking what’s going to happen next? How, and how quickly will this condition progress? What do we have to prepare ourselves for? He is not going to be able to see the specialist MS consultant/therapist/clinic whatever until the end of January so will not get any specific treatment until after that…but what I’ve read of some of the treatments the side effects seem to be worse than the condition. I feel if i can get information then I will know how to help him…for 3 months he didn’t want to even google the condition to find out about it, until he was finally told that was probably what his problem was.

Hi Initial,

Just wanted to tell you my story which is similar to yours and may reassure you a little. I was diagnosed with optic neuritis in February and had an MRI. The opthalmologist told me in clinic that this would indicate MS and that I should see a neuro. I got an appointment for August which was unnacceptable to me as I was panicking and developing all sorts of symptoms.

When I did see the neuro, he said that the lesions looked old, and what was important and difficult to predict was what would happen in the future. He said that if I had another episode I would then meet the criteria of MS. Since then, I have been absoloutely fine. I know it’s early days, and I am a bit frightened of a major relapse, but my eye fully recovered and I am just trying to put it to the back of my mind whilst looking after myself (losing weight, eating healthily, getting enough sleep). I work almost full time and have a family. I have hardly told anyone and no one would notice.

All I’m trying to say, is if I have MS, it’s not interfering with my life at the moment! I have never been one for much physical exercise, but do like a walk, and can still do that easily.

Don’t panicand take care of yourself.

So very sad to hear about you Mum.xx

Sally

Hi Initial,

Just wanted to tell you my story which is similar to yours and may reassure you a little. I was diagnosed with optic neuritis in February and had an MRI. The opthalmologist told me in clinic that this would indicate MS and that I should see a neuro. I got an appointment for August which was unnacceptable to me as I was panicking and developing all sorts of symptoms.

When I did see the neuro, he said that the lesions looked old, and what was important and difficult to predict was what would happen in the future. He said that if I had another episode I would then meet the criteria of MS. Since then, I have been absoloutely fine. I know it’s early days, and I am a bit frightened of a major relapse, but my eye fully recovered and I am just trying to put it to the back of my mind whilst looking after myself (losing weight, eating healthily, getting enough sleep). I work almost full time and have a family. I have hardly told anyone and no one would notice.

All I’m trying to say, is if I have MS, it’s not interfering with my life at the moment! I have never been one for much physical exercise, but do like a walk, and can still do that easily.

Don’t panicand take care of yourself.

So very sad to hear about you Mum.xx

Sally

Thanks so much for your encouraging (and kind) words Sally :slight_smile: Early days. Will be interesting to see what my neurologist says when I see them. Ali.

Ali

Like you, I had turned a corner and got fit (in fact I was qualified and taught fitness classes for 5 years) but up to the age of 35 I was a complete couch potato… so MS was a complete shock!

Keep exercising as much as you can, core strength is helpful to have when things get a bit wobbly! I’m still waiting for my neuro rehab but the physio I saw encouraged me to stay on top of that.

You’ll no doubt go through lots of ups and down, accepting MS is hard, it’s that simple. I still go through days I’ll fight it and days that I’m tearful and just want it to stop.

Take care and there’s always support here when you need it

Sonia x

Hi folks,

An update. Saw my neurologist yesterday & it was a very positive meeting. He showed me my scan & ran through a serious of tests (testing my strength, eyesight, balance etc).

There are several lesions on my brain, but he says he has no idea how old some are. There is a lesion on the part of my brain that caused the eyesight problem, which the vision is slowly but surely rectifying itself. I’ve never had any other symptoms typical of MS.

He said that due to my age & general health the outlook is pretty positive. It was the symptoms of an MS attack, but as it was my first I am not officially diagnosed as having MS. He referred to it as a ‘clinically isolated syndrome (CIS)’, and also felt I didn’t need to undergo further tests or get started on any treatment. He said I ‘could’ have another MRI scan in two or three months, but we both felt than unless/until I have another episode there’s no point really in putting me through any more stress. It could be years before I have another episode (or tomorrow), we just don’t know. I’ve just to try and put it behind me for now & continue to live a healthy normal lifestyle. Saying that I’m off for a nice long run!

The neurologist is reffering a local nurse to me who specialises in people diagnosed with MS (or those with a first attack/episode). She is going to contact me & give me more information/support. And he also recommended I started taking vitamin D supplements of a 1,000 units a day.

Thanks again for all the kind words of support!

Ali x

Great news Ali!! Enjoy your run :smiley:

So glad to hear your news and you are sounding so positive now. Keep enjoying your running! x

Good news Ali :slight_smile:

Sonia x

Good news Ali :slight_smile:

Sonia x