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Awaiting diagnosis - tips to manage symptoms without medication?

Hi everyone!

I’m new to the forum and after lurking for a little while I wanted to say hello and also ask for some advice please!

I’ve had some symptoms for a few months that my GP felt were consistent with MS so he referred me to a Neurologist - I had my assessment a couple of weeks ago and the consultant said that my symptoms are caused by an inflammation of the spinal cord, but he needs to find out if it’s a one-off event caused by an infection, or if it’s caused by an auto-immune disease such as MS or lupus. I’ve got an MRI with contrast on my head and neck tomorrow, and then my results appointment is in about a month.

From looking at the symptoms I’m pretty certain it’s not lupus, but my symptoms really closely correspond with transverse mylitis (which I think is just the technical term for spinal cord inflammation but I’ve confused myself with researching online!) or MS, so I’m anticipating that the consultant will either give me an MS diagnosis or tell me that it may just be an individual “attack” of transverse mylitis and monitor me in case I have further attacks that could mean I’m developing MS (I probably just explained that horribly, sorry!).

Emotionally I’m doing ok at the moment, but my symptoms have been increasing over the past few weeks and are starting to impact on my day-to-day life more than before. The symptoms that are causing me the most difficulty at the moment are:

  • Fatigue (I’ve become completely exhausted and am struggling with my normal tasks).

  • Brain fog (I’m guessing it’s linked to the fatigue, but I’m struggling to concentrate and I keep losing my train of thought or forgetting words - I’m normally really on the ball and feeling like I’m not on top of things is really difficult for me).

  • My legs (they often feel really heavy, and walking (especially up stairs) is more of a struggle - they also feel really weak and jelly-like as though they could give way at any moment.

  • Numbness/tingling in my right hand/arm (I’ve had this from the start but sometimes the sensation is more uncomfortable than at other times, and it’s bordering on pain rather than just discomfort at times).

I obviously can’t be medicated until I have a diagnosis, so I wondered if anyone has any advice for dealing with the above symptoms please? I’ve been doing what I can to manage them (resting/sleeping more, walking slower and shorter distances, avoiding stress/upset as it seems to be a trigger, making lots of lists to help me remember things/be more focused) but I’ve now got to a point where I need something more because the symptoms have worsened.

I’m a 31 year old female in case that’s relevant!

Any advice you can give would be greatly appreciated :slight_smile:

Thanks,

Sarah

Arrrrgghhh. I’ve just written a load in response to your post and then lost it. I hate it when that happens. Bugger it.

So, to cut a longer story short … (sorry Sarah) … you are already doing a load of the things I’d suggest. Things like fatigue management by breaking jobs up into small chunks, walking less and slower. Writing everything down when you forget stuff, keeping notes and lists. Starting a diary is a good plan, especially to keep track of symptoms / health.

Re medication, obviously you can’t get a disease modifying drug without a diagnosis, but you could get something to help with what sounds like neuropathic pain in your right arm. If you see your GP, explain the symptoms and say that it’s been mentioned that a low dose of Amitriptyline might help. It’s something you take in the evening, not too late as it can leave a bit of a ‘hangover’ type feeling the next day. But it helps with pins & needles / burning type pain, plus helps with sleep. So would maybe help a bit with the fatigue and brain fog too if you were to sleep better.

See what your GP says anyway. It is a very common drug, so it’s an easy one for them to prescribe.

Now I’m getting fatigued - nearly lost the post again!!

Good luck with the MRI. They are blasted noisy things, but try to relax. Ask for a wedge/pillow under your knees if they don’t offer. If helps you to keep still. Remember to take off all your jewellery, and wear a stretchy type bra rather than one with any metal in at all. And socks. It can feel cold while you’re in the scanner.

Welcome to the forum, we would all rather not qualify to be here, but now you are, just ask if there’s any help / support / information you need. And let us know how you get on.

Sue

Hi Sarah, I can’t improve on Sue’s comments and I agree with what she has said about neuropathic pain in your arm. You shouldn’t need a diagnosis to get the appropriate medication for it. I can only add that you are very welcome here and whatever you want to chat about is OK with us. There’s a lot of experience and wisdom on the Forum and we’ll do our best to help in whatever way we can. Best wishes, Anthony

Thank you for the warm welcome Anthony - I’ve been having a little look at other peoples’ topics over the past few days and saw how supportive everyone is so it’s really nice to know that I’ve got somewhere to talk or ask questions while I’m getting used to everything :slight_smile:

Sue - arghhh! Thank you so much for writing another message after the first one was lost - I know how frustrating that can be (I waffle like nobody’s business) so I’m really grateful that you took the time to try again :slight_smile:

Thank you for the advice about amitriptyline or similar medication - I’ll see if I can get a GP appointment soon to ask about it. It’s weird because sometimes I barely notice my hand/arm aren’t right until I try to use them, and other times they’re really uncomfortable - I guess I’m used to dealing with specific injuries rather than something caused by the CNS so having symptoms dip in and out is strange for me!

Oooh! I’d planned to remove all my jewellery and wear clothes without buttons/zips etc but I hadn’t considered my bra - thank you! My mum was worried I might feel claustrophobic in the machine because she hated it when she was scanned to diagnose her Parkinson’s but I think I’ll be ok in that sense, I might just get a bit fed up of the noise! The leaflet said I could take a CD for them to play so I might try that, although it might ruin my favourite songs if they’re punctuated with bangs haha!

I haven’t got any other questions for now, but I’ll definitely ask if I think of anything and will keep you updated when I get my results :slight_smile:

Sarah

Sarah

Believe me, the MRI will wreck your music and you’ll spend the whole time feeling aggrieved because of the racket.

Someone recently said that they sing One Man Went to Mow in the MRI! That would bug me, but she put it in my head and now it’s in yours!! Sorry.

And re the bra, someone not long ago told me about very nasty burns they’d got by wearing an underwired bra in an MRI. Horrible.

So, either take it off before the scan, or wear a bra with no metal in it (or go braless if you can!), don’t wear jeans or anything with any metal. I used to have to remove my belly piercing before the MRI! Those days are now gone. (The days of flat stomach and fingers able to remove a tiny ball from the ring to get the thing off!) Nowadays it’s more about getting my wedding ring off my fat fingers!!

Sue

get into heavy metal music because that fits right in with the scanner!

and good luck xx

I’m taking a CD with me just in case but if I change my mind/forget I’ll try One Man Went to Mow haha!

Oh wow, I hadn’t even considered burns, I just assumed anything metal got drawn towards the machine- I hope she’s ok. Due to my forgetfulness I’ve put a note on the homepage of my phone to remind me to wear a sports bra tomorrow just in case! Piercings are certainly more tricky now that one of my hands is numb although hopefully I should get them all out ok tonight - and then tomorrow I have the fun of squeezing off my wedding and engagement ring and hoping my finger doesn’t puff up to normal size before I can get them back on again!!

Just a quick update to my initial post - this evening I got home and had been sent a copy of the letter the consultant sent my GP and he’s put “probable clinically isolated syndrome” under the diagnosis section, so unless the MRI shows up both old and new lesions, or unless he classes my symptoms improving for a few weeks before getting worse/changing slightly as a second episode then it looks like I’ll be over here sitting and waiting to see if anything happens to change my CIS diagnosis into an MS diagnosis!

Haha good plan! My husband suggested taking some Slipknot with me to see if the screaming competed with the machinery but I’ve gone for something a little more laid back on this occasion!

Thank you :slight_smile:

Just a quick update - the MRI was a little more uncomfortable than I thought (I didn’t realise I’d be in there an hour trying to keep completely still!) and I felt really dizzy afterwards but I’m ok now.

My results appointment is 18th September and I’m expecting to be told it’s CIS, but hopefully I can start on some medication to try to reduce my symptoms. I realised earlier that I’ve had a few occasions over the past few years where I’ve completely lost my peripheral vision for a couple of hours (I didn’t think anything of it because I wasn’t in pain and it came back) but I’m starting to wonder if that was an early symptom so I’m going to contact the consultant’s secretary and ask her to make a note of it when he comes to review my results in case it’s important.

And now I guess I just wait!

Thank you for being so welcoming and for the advice so far, I really appreciate it :slight_smile:

Sarah

Hi everyone, I’ve got my results appointment on Tuesday and I’m feeling quite nervous about it now. I want to make a list of questions to ask depending on the outcome of my tests to make sure I’m getting the information I need and know what the next steps will be. Am I right in thinking the following are the things I need to be asking during my appointment? If it’s CIS: whether there’s an indication of what caused it; what medication I can have to treat the symptoms I’m experiencing right now; what the likelihood is of me having further episodes and an MS diagnosis down the line (and whether I can have medication to slow it down/prevent it); how we can monitor potential future episodes. If it’s MS: how/when to find out if it’s primary progressive or relapsing and remitting; what medication I can have to manage my existing symptoms; when/how can I start disease modifying drugs; what the next steps are. Are there any other questions you recommend I should ask that I might have missed? I’m trying to make sure I get the most out of my appointment as I’ve seen other people say they’ve come out of the appointment and realised the neurologist didn’t cover much about medication/next steps so I want to make sure I’m ready to find out as much as I can! Sarah