Last reply 4 months ago
Just diagnosed

After a couple of years of monitoring I have just got my MS diagnosis. I have my appointment with the MS neurology team in October and no idea what to do to prepare.

I originally went to the doctors for back pain and repeated spasms, after months of physio got an MRI which showed lesions confined to my spinal cord followed by lumbar puncture which showed signs of MS. My latest MRI shows an increase in lesions (both size and number) in both spinal cord and brain which is what has led to the diagnosis.

My symptoms to date are mostly back/neck pain and spams (although I’m reasonably fit and active with the help of pain management) as well as urinary incontinence. However, I have a whole host of other symptoms that may or may not be related. For example I regularly experience fatigue but I’ve also historically had some vitamin deficiencies so I don’t know if it’s related to that. I have some memory issues but not sure if this is related to the fatigue (or even the painkillers that I need to take on a regular basis). I get double vision increasingly often but I also had corrective surgery for a squint as a child and have had historical problems with this. I also get dizziness and vertigo but I have had some ear problems that have caused this previously.

So basically I have a couple of questions:
How do I know if my symptoms are MS related or if they are symptoms of something else?
What can I do to prepare for my MS appointment?
What can I expect for the future? Does progression of lesions mean that I should expect more symptoms? Or is it possible that I can develop more lesions without additional symptoms?

I should also point out that I am most definitely in denial. I keep trying to convince myself that despite the number of MRIs, etc that I have had over the past few years and that I am in constant daily pain without medication that somehow they have made a mistake and I am actually fine. Also if anyone has any tips about how to support your partner during your diagnosis that would be great – my poor husband has been my rock and I tend to lash out when I’m feeling vulnerable so not only is he dealing with everything he’s also having to deal with my crazy emotional ass.

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4 months ago

I understand a lot of what you say, once in front of a Consultant take a list and all will become clearer from the beginning I talk about the same worries, feel free to share and good luck

4 months ago

Don’t panic

4 months ago

Hi and welcome to the club 😀
In answer to your question I think you’ve covered just about everything in your post…
Dizziness…tick x
Vertigo….tick x
Ear problems… tick x
Spasms …. tick
There is medication that may help with most of the above but the ones with an X could be down to one thing with your ear.
Spasms can be treated with muscle relaxants like Baclofen
There are meds for fatigue but they seem to be a little hit and miss for some and not all nueros like to PX them.
Hopefully you’ll be asked to be put on a DMT disease modifying treatment.
Which may help to slow down the progression fingers crossed.
But that’s a whole different conversation…..
Being in London you should be introduced to your MS Nurse who will be able to help you out with most of the above.
Feel free to ask anything you like we’ll be here to help out if we can.
Welcome again 😀

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