Good morning, this is my first post. So last October I was admitted to hospital for a week with a suspected stroke, lost all feeling down my right side, started in my foot and took about a week to go up all the right side. I was discharged to see neurologist and have another mri of my head and spine. The mri showed significance and can be suggestive of demyelination including the left peritrigonal region and both temporal poles. Spine is still waiting to be reported on. For the last 3 years before this episode I have had constant urine infections, stress incontinance and am so tired ALL the time even if I have had a full 10 hours sleep. The numerologist said this could be ms but also might not be and we re scan in October but if I have different symptoms call them and go back. Lately I have had to go to hairdressers to get my hair done as cannot keep my arms above my head to was it myself in the shower, unable to walk for more that 20 minutes without getting severe pain in my back. So went back but neurologist wants to still stick to original plan, I’m so confused and tired and in pain I just don’t know what to do. I’m 46. Any advice would be great, thank you. Oh I also have double vision when tired and a throbbing in my right eye.
Hi Babsie.
THis does sound quite like MS.
Some neuros take their time with diagnoses.
Took 22 years in my case, despite having very typical PPMS symptoms from onset.
Boudsx
Sometimes RRMS is hard to diagnose and sometimes it isn’t. I had MS written all over me and got a working dx quickly and a formal one not long after. So if that is what you have, it might not take all that long.
I am sorry that you are having a horrid time.
Did they not propose the option of a lumbar puncture? This would be a way to confirm diagnosis without waiting on another MRI.
I understand why they want to wait but I’m just really struggling with it all. My mri showed suggestive demyelination in the left peritrigonal region and both anterior temporal poles, still awaiting mri of spine. Surely this enough along with symptoms, I thought the earlier the diagnosis the better to slow it down before more lesions appear?
She said next step is this but doesn’t want to do it unless absolutely necessary, she wants to wait just got my follow up for January 2024! Just so stressed with it all which I know is not helping.
I did a spell of ‘watchful waiting’ myself before my first MRI, even. But it only lasted a couple of months before the next relapse arrived and then things moved fast. Doctors can switch from lethargic to all-business pretty fast when the facts change. I’m not wishing a relapse on you, obviously- I’m just saying that a change in your condition might elicit a different response.
Its so hard as i went back as having problems but they are still watch and wait! All i hear from my family is your always tired or sick then they accuse me of being lazy, its so frustrating. We own our own business and my husband still excpects me to work full time 6 days a week 7.30 till 6pm! I fall asleep at the desk as its draining me x
That sounds very difficult.
In my own experience, those closest tend either to catastrophise or minimise/deny. Neither is terribly helpful, but if can help to remember that people have their own fears and struggles and are coming to terms with potentially destabilising and frightening change as best they can, which might not be very skilfully or even very kindly. But it’s a long road, and folks have to find their own path to dealing with things before they remember themselves and start to think about and support you. It doesn’t necessarily mean that they don’t care: people tend not to be at their best when they’re frightened and sticking their fingers in their ears and hoping it all goes away.
I hope that you feel more supported and listened to soon.