Exhausted, stressed, confused and a teary mess.

New diagnosis and before diagnosis
1

This year has been so tiring for me.

Got optic neuritis first in Jan, got it again in Feb so badly that I was admitted to hospital, had an MRI which showed brain inflammation and had a lumber puncture which showed abnormalities in the CSF (wasn’t told what was abnormal though)
Also had abnormal bloods with raised CRP. Wasn’t given any steroids, was told it would go away with plenty of rest, which it did.

Got optic neuritis again at the start of April, again so bad I was admitted to hospital due the dizziness from it making it so bad I couldn’t walk or even sit down without anti sickness tablets. Whole of my body feels worn out.

Finally got to see a neurologist for longer than a quick visit to my hospital bed, and he feels that I have relapsing MS but doesn’t want to say I do for sure without doing more tests to rule other things out (fair enough). Just had more blood tests to check my vitamin D levels and to check for other diseases such as lupus, limes, etc. Waiting for results.

Finally been prescibed steroids, Methylprednisolone (an IV powder I add to orange juice apparently :S), which i’m still waiting for from the pharmacy and been told to take vitamin D, as well as the stomach and bone protector. Trouble i’m having at the moment which is making me so stressed is doctors sick notes, i’m so dizzy/nauseus/wobbly I can barely walk anywhere without using my husbands arm for support let alone work. Neurologist told me to get the note from GP, GP says to get it from Neurologist. Fun little circle i’m stuck in. Not to mention the pain in my head which is stopping me walking, wearing my glasses and from sleeping

Just wanted to know does this essay sound similiar to any of you who are actually diagnosed with MS, I would rather know I have MS so I can then start dealing with it than being stuck in limbo.

I’m so exhausted from the pain, lack of sleep, backwards and forwards to doctors/hospitals. I’m literally in tears daily from the stress of it all, any reasuring words you can give me would really help. Thank you all in advance.

PS. Sorry about the length of this essay :slight_smile:

2

Just wanted to say hello and welcome

I can’t offer you loads of advice as i am newbie too (dx feb) Just wanted to let you know that you are not on your own and i can completley empathise with how your feeling. The road to diagnosis of any kind is often a long and mentally draining. Try not to stress yourself out too much as that can make you feel worse, you have people investigating you so that means they will start to have some answers for you soon! I’m not sure about the sick note circle you are in, maybe go see your GP again and explain how hard you are finding things? I’m sure somebody else will be along soon to give you some practial information! Rest lots and take care of yourself.

Laura x

3

Hello and welcome :slight_smile: As you’ve already been told, optic neuritis and vertigo/dizziness can be caused by several different things so although MS is probably the most likely cause, it’s impossible to say for sure until the other options have been ruled out. I think, if I were you, I would accept that it’s likely to be MS though - it does sound very consistent. I’m rather disgusted with the neuro and GP for passing you back and forwards - not good care at all! There seem to be a couple of options to sorting it out. The first one is phoning your neuro’s secretary, explaining the situation, and asking for three things: recommended meds for your pain and a referral to neurophysiotherapy for your dizziness (should the steroids not fix them - you can always cancel the appointment if you no longer need it) and what to tell your GP to write on your sick note. Then going to see your GP and telling him/her what the neuro said. The magic words for GPs are usually, “my neuro said” - it avoids them getting grief from the PCT for going beyond their level of authorisation. You can reach your neuro’s secretary by phoning the hospital and asking to be put through to Dr X’s secretary. They can be very useful contacts! The other (simpler) option is to go straight to the GP and ask for a sick note simply describing your symptoms, ie optic neuritis and vertigo. I suggest this because I’m wondering if the GP is balking because he/she doesn’t want to write “RRMS” because the neuro hasn’t confirmed it and GPs can’t diagnose it. If you have no joy with the GP, then I think you’ll need to speak to the Practice Manager to get it sorted - we need to provide sick notes to our employers, it’s their job to provide them, so please can someone sort it out because you are SICK! That option doesn’t get you any help with your symptoms though, but it’s worth asking about them too. I believe that carbamazepine is the most effective ON painkiller and I can’t see why your GP couldn’t prescribe it, but it may need those magic “my neuro said” words :frowning: Your GP can also refer you to neurophysio - they can show you exercises that can help vertigo. Vitamin D3 supplements are generally much cheaper on-line, especially if you pay for prescriptions. A lot of us use Healthy Origins. If your neuro didn’t tell you how much to take, the recommendation from my neuro is 5,000iu a day, however it is best to get regular blood tests to make sure that’s the right amount for you: we are supposed to aim for a level of 125-150nmol/l according to various websites, and we shouldn’t allow it to get too low or too high. Now for the reassuring words: I know that life is nigh on impossible right now, but it will get better. Hopefully the steroids will calm things down really quickly, but even if they don’t, attacks like these have a limited lifespan. Get the sick note sorted out and then just rest and be kind to yourself. Hopefully the GP will come up trumps with meds for pain too (ask about something for vertigo and nausea too) which will help in the meantime. Dealing with all of this gets easier with practice and we find a new normality in it all. And it’s not the end of the world. With the right support (and there’s a lot out there), we can still have a long, happy and fulfilling life - we just have to get through the, almost always, chaotic beginnings first! Hang in there. It really will be OK. Karen x

4

Thank you for all your advice and support.
I’m on the steroids as we speak, i’ve been given IV Methylprednisolone but been told to add it to ornage juice and drink it. Most foul tasting medication i’ve ever had, even 9 hours later I can still taste it no matter how many times I have brushed my teeth and used mouthwash. But if it does the job I can put up with it for three days.

I seem to be getting new symptoms too but unsure whether to go to the GP about it or if it will be wasting their time?
My whole entire side from the top of my shoulder to the tip of my toes is like lead, really heavy to move and I can’t get it comfortable in any position? It feels like i’ve done a marathon or been carrying something really heavy. It’s a achy/crampy sort of pain.

Have any of you experienced this before?

Thank you again.