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Hypermobile, 99% diagnosed MS, waiting on neurology, trying to stay postive!

Hi everyone!

So I say 99% diagnosed because I’m waiting for my first neurology appointment next week, the 21st, but the words my GP used when they called me in 24 hours after my MRI scan were ‘these results are highly indicative of multiple sclerosis’.

I’m hypermobile too (not EDS, just crazy bendy joints!) which is a tonne of fun when teamed with muscles that wont respond.

I’m doing my absolute best to stay positive though this as it’s strangely comforting to be able to give my symptoms a name, but having an uncertain future is terrifying too.

I think stress and cold weather may be triggers for me, as every time I’ve experienced what I now know is a relapse, I’ve either been extremely stressed or it’s been freezing outside!

I’ve read that warm weather is a big trigger, that that doesn’t seem to be the case for me so far, and it’s hard to tell if any pain is due to HMS or MS because I’ve become so used to it over the years.

I’d like to ask… how likely is it that I’ll be prescribed medication on the 21st? Do I get a choice in what I take? Will anything I’m given be affected by the HMS? Any many, many other questions that I’ll leave for another time :slight_smile:

Laura x

Hi Laura

There is a slight problem in being virtually diagnosed by your GP, they aren’t really able to diagnose MS, or in fact to rule it out. Only a neurologist will definitively diagnose MS. And generally then following not just an MRI, but a full neurological examination and maybe other tests, possibly including a lumbar puncture and/or visual evoked potentials.

But, it may be that the radiologist has reported the findings from the MRI in such a way that the GP feels completely confident that you will be diagnosed with MS once you see a neurologist.

Be that as it may, you aren’t likely to get any drugs at your initial appointment. What is more likely is that you’ll be asked to go through your medical history, and to have a neurological exam. The neurologist may then diagnose MS, or refer you for further tests before diagnosis is confirmed.

If you are given a diagnosis, you’ll be given the name and contact details of an MS Specialist nurse. S/he will probably run through disease modifying drug (DMD) options with you. The choice of drug will be based on how active your MS is, on your other diagnoses, what is available locally and on your own preference.

The MS nurse will be really important to you in the future. S/he can help you out with DMDs, symptoms, relapses, other dug therapies, physiotherapy, any other referrals and point you towards other sources of information and advice.

I hope all goes well for you with your neurology appointment. Take with you some notes about what’s happened to you in the past, roughly how long symptoms have lasted or whether anything has stayed with you without improvements. Also take a list of questions. It’s also a good idea to have company for a neurological appointment. This is because often we leave an appointment and have forgotten half of what wa said.

Sue

Thank you for responding Sue. My GP read the radiologist report, there was more to it but I’ve since forgotten, but they indicated the likelihood of MS. The reason I ask about medication is that I have done a lot of reading and come to realise that some medications involve injections - and I’m deathly afraid of needles! I’m starting to come to terms with the fact that this may be something I need to get used to rather quickly, especially if there is to be a lumbar puncture in my near future D: I’m keeping a notebook with me so I can jot things down as I remember or notice them, I’m also taking my partner and mum to my appointment with me since they both notice things I don’t, and will probably remember more than me since my short term memory is shockingly bad at the best of times. In a way, I’m looking forward to the appointment as having a confirmation of the weird symptoms of the past few years is somewhat comforting, but I’m also nervous as hell!

hi laura

most of the injectables come with a gadget so you don’t see the needle just feel a sharp sting.

please don’t worry yourself to death.

look at the positive - at least you’re close to having answers.

carole x

Hi Laura

The trouble with some (all) of the non-injectable DMDs is that you have to have regular blood tests anyway, so it looks like needles are going to feature in your life in some way.

The needles that you self inject with are actually not the scary kind. They are teensy weensy little needles that just go under the skin. So although it’s quite hard to make your hand actually put the needle into your own skin at first (your brain is saying ‘don’t be a wuss’, but your hand is saying ‘nope can’t do it!’) they don’t hurt and you get used to them.

The lumbar puncture is a scarier thought than actuality. You can’t see it or feel it (it’s behind you!). So long as you stay laying flat afterwards and drink some fat coke to ward off a nasty headache.

And it’s definitely a good thing that you’re taking some spare brains with you to the appointment (ie. partner and Mum). I described the way you leave the neurologists appointment as having an attack of ‘neurologistitis’ recently. It’s where you have a working brain on the way in but immediately forget everything that was said to you or by you during the appointment.

It’s not unusual to look forward to having MS confirmed. It makes you feel initially relieved that you have an answer to the weird symptoms and the anticipation of some drugs which will help ward off relapses in the future, plus drugs to help with symptoms. (Btw, have you seen https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid )

But soon after your MS is confirmed as expected, you are likely to have a bit of a crash as all the ramifications of having MS sink in.

Still, at least you have all of us to talk to about how you feel.

Sue

And there we have it… Diagnosis is definitely RRMS Next step is referral to the MS team, neurologist recommended I start on meds asap. I haven’t been assigned to an MS nurse at this stage though - is that normal? The neurologist suggested not to do so until the MS team are involved So, still kind of in limbo I guess! Thank you for the support so far everyone, I’m desperate to do a few things I had planned before the Dx but now I’m waiting again, it’s putting me off starting anything… Like going back to the gym, which is just hilarious to think about since I normally have a million excuses to avoid gyms!