I had ON 2014 and a mri showed brain lesions. The neurologist advised at the time 80% chance it was MS. I cried and I worried but eventually I believed that I was one of the lucky 20%. Then last year I started having severe fatigue. I finally went to the doctor thinking I must be lacking iron. Got blood tests and they all came back clear. I then realised my walking/running was different but could not really place it so just thought I was just run down. Until someone asked was it more than that. It got me thinking ms again. I now am awaiting a brain and spine mri along with blood tests. But by the telephone conversation with the neurologist I got the impression that I should not have been left for so long and I would be referred as urgent. However, I feel so much better than I did last year and the fatigue has always been part of my life and just sometimes have worse times than other. The walking has resumed to normal. So do I really want the diagnosis now and open a can of worms or do I try stay oblivious for as long as I can? I just hate the thought of being diagnosed. Even going to the doctors was a big deal for me as it was admitting something wasn’t right. The other part of me thinks get diagnosed and get treatment that can prolong any damage. But guess I have made my decision by agreeing to the mri but still can’t shake off the feeling that I should leave it be.
Cant see any advantages in leaving it! The slightest thing that goes wrong you will think MS and it will be nagging away at you.
Speaking from my experience - I would get the diagnoses and any treatment.
I had problems and I went to a private neurologist -he said ms was possible and the bottom fell out of my world. I then had a mri and saw a nhs neurologist - he said he didnt think it was ms.
I had other tests to rule out other problems - all came back clear. By then my symptoms had cleared up, but I had an appointment with the nhs neurologist. He told me I could have a lumber puncture to rule ms out, but seeing as my symptoms had cleared and he told me it wouldnt change any treatment, i didnt bother to proceed.
Then 2 years later I started with similar symptoms and I didnt know if it was just my mind playing tricks with me. I was going out of my mind. So I went and saw another neurologist. The diagnosis came back as secondary progressive ms with relapses. And there was no treatment suitable then.
If I had got the diagnosis in the begining I could maybe had treatment which could have delayed the progression - who knows but if I had my time over I would definatly get diagnosed as soon as possible.
You maybe different, and can put it from your mind ,but I was always questioning any symptoms etc
Good luck with whatever you decide
Have you heard the saying ‘ignorance is bliss’… except you aren’t ignorant of a potential dx of MS and perhaps not knowing will gnaw away at you.
At least if you have a definitive dx you can then have a plan moving forward with regard to any possible treatments. Without a dx, you can’t.
Good luck with whatever you decide.
Hi, you already have your answer by saying ‘get diagnosed and get treatment’.
You may actually be one of ‘the lucky ones’ by getting a treatment that does delay progression of the condition.
Hope things work out for you.
So, I have officially been diagnosed by letter saying there has been progression in the disease and referred to an ms nurse. I then receive a letter from the ms nurse saying here is my contact details if you require them! A life changing event all by post. Thankfully I requested a telephone call with the neurologist and I got a call back the next day. So we have agreed to do a contrast mri to see what next.