Possible MS aged 26

Hi, I have had problems that could be linked to ms since I was 18. After some MRI’s I was referred to see a neurologist due to suspected MS. I have loads of symptoms that are similar and just want to chat to someone so I can see if what I’m experiencing is related to ms!
There’s a lot more to it but this is my first post in here so thought I’d keep it short! Thankyou

Hi Caroline1995,

Hope you are OK and that the neurologist can help with a diagnosis.
Many symptoms are similar between conditions, so we need the professional to try to work out exactly what is going on.

Good luck
Mick

People on here cannot diagnose you. MS is very different for each of us so you’ll need to rely on the professionals. All the best.

orthopedic specialist did mri scans which showed lesions on spine and it was he who suspected ms and referred me to neurologist. I have severe pain near the top of my spine which is not helped by 2700mg of gabapentin a day plus tramadol and baclofen and ibuprofen. I also have pain in hip and have difficulty walking too far. The pain in my hip and back is constant and always there with no breaks in between.

Hello Caroline

Welcome to the forum. You seem very young to have had possible symptoms for the last 8 years. I do have sympathy for you. It’s bad enough when you’re older having symptoms that slow us down and cause pain. To have had your youth blighted like this seems very unfair.

You’ve said you were referred to a neurologist. Have you seen them yet or is the appointment still in the future. I do hope it’s not still weeks/months away. Having suspected MS, or some other problem is a real downer; it plays on your mind on and off all the time.

Can I make a suggestion? While you are waiting to see a neurologist (assuming it’s still in the future, or even if you’ve had an initial appointment), why not write a diary of what has happened to you and when.

If you think back as far as you can, write notes of what has happened and when. Note how long symptoms lasted, whether they fully recovered or if anything only partially resolved. This will help when you get in front of a neurologist. Don’t be worried about getting your notes out to help your memory. It will help by giving him/her the fullest picture of what has happened to you and when.

Did you have just spinal MRI or a brain scan too? That is something that the neurologist will probably want to see. So don’t be surprised if you need more testing.

Best of luck

Sue

Thank you for your replies. It’s so good to talk about it. This will be my first neurology appointment and it is supposed to be an urgent appointment but in the current situation I have been waiting 14 weeks. The Orthopedic Consultant did spine and brain mri scans and then referred me urgently to the Neurologist with suspected MS. Apart from the symptoms I have mentioned I also have problems with my bladder and spend all day needing to go. I get a lot of pins and needles/numbness in my arms and hands. I’m very tired a lot of the time too and seem to have no tolerance for heat. Stress seems to make everything worse but it’s hard not to get stressed at the moment. I do not seem to go into remission at all and my symptoms are definitely gradually getting worse. I have had to give up work. I do not expect anybody to diagnose me on here but am grateful for people’s input. Thank you.

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Hello again Caroline

Re your bladder, there’s no need to wait to see a neurologist to try for some help. You can be referred by your GP, or I think even self refer, to the community bladder and bowel service. They could talk about your bladder and perhaps make some recommendations for help.

For example, there are drugs to help an overactive bladder (which yours sounds like). Sometimes people have bladder spasms or just a bladder that is plain badly behaved. This is regardless of the cause.

For example, I have a bladder that behaves as though it belongs to a toddler. Constantly complaining that it ‘wants a wee’! I don’t have bladder spasms, just a neurogenic bladder. I take a drug called Trospium. There are many others, many people use a drug called Betmiga (aka Mirabegron) for similar reasons, ie either spasms or just over activity. These can be recommended by a bladder/urology nurse or prescribed by a urologist. (To whom your GP could also refer you.)

For people with bladder spasms (detected by a urodynamic test), or bladder weakness / incontinence, they could also have Botox on the bladder.

Since coupled with my naughty bladder my bladder won’t empty, I also do intermittent self catheterisation. (This is much easier than it sounds, honest!) People who have Botox on their bladder also have to do ISC as they wouldn’t be able to void afterwards.

Bladder problems are a misery and you shouldn’t wait to see a neurologist and/or have any diagnosis (whether it be of MS, something different or just a diagnosis related to your bladder.)

I’d also suggest you take a look at Fatigue | MS Trust Fatigue is something you can learn to manage. That doesn’t mean you stop feeling fatigued, you just learn some coping strategies. Things like breaking tasks up into smaller chunks, getting lots of rest and simply learning to say No.

Keep talking to us Caroline, living in wait for an ‘urgent’ neurology appointment is miserable. There are things we can suggest to make life a tiny bit easier even without having a diagnosis.

Sue

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Thankyou very much for all your help sue! it’s really appreciated

Glad I was useful. Um, forgot to say, the point about all of the drug therapies I mentioned for bladder overactivity and/or spasms is that they stop the feeling like you need to ‘go’ all the time! Stupid not saying what the drugs might help with. Sorry.

Sue