This is my first post after loitering on the forums for the last month or so.
Back in August I started to suffer from optic neuritis. It took over 5 weeks to get a dx - firstly I was told it was migraine, then a sinus infection and then eventually I stopped going to the GP and headed off to my optician who made me complete my fields test 3 times before he wrote a referral to the Eye Clinic at the local hospital.
I endured 3 more weeks of tests with them before I was eventually given another referral to Neurology.
I was dx with CIS after had my first MRI (brain only) last month which lit up with multiple lesions. When told that is would most likely lead to MS in the future I was a little taken aback as not once had MS been mentioned in conversation up until that point!
When the neurologist asked if I had ever had any other symptoms I was so unaware of what they might be that I just said no…
I called my GP the next day to go through my medical history over the last few years and I realised that the ‘burning’ sensation in my thighs, the pain that I have always referred to as ‘my annoying - - sciatic nerve’ which in fact is a tightness and constant pain in my hamstring and the fact that I often feel lightheaded are probably related too.
I have a spinal MRI booked in next month and I’m hoping for some answers, and a firmer dx.
Thanks for reading, if you have any advice for me in the meantime I am all ears!
It sounds like you’ve really had a fast journey to where you are, and to suddenly have the spectre of MS slung at you must have been a real slap in the face.
If you’ve had odd things in the past and multiple brain lesions, it sounds like the neurologists are fairly confident that your diagnosis of CIS will change to MS at some point, either after your spinal MRI or maybe they’ll do a lumbar puncture first, or even wait until you have more symptoms. Although with multiple lesions, they can perhaps tell that some are older than others and that MS is likely. They don’t tend to get you all prepared for MS unless they are quite sure. But, I could be wrong, they may leave you with a CIS diagnosis and you may never have another symptom. I hope so.
But, meanwhile, feel free to air your fears, concerns and worries on here, we’ll do our best to answer questions.
One thing I would say, is that if you are diagnosed with MS, it’s not the terrible diagnosis it used to be. There are many disease modifying drugs available which aim to reduce the number of relapses, and this then reduces the nerve damage which causes more permanent damage.
Just thought I could add to the posts above. I had Optical Neuritis last June. Started off with intense pain above eye only when I looked right. Went to doctors - told nothing to worry about. In work next day noticed everything was blurry. Got pretty worried as realised something was definitely not right so managed to get emergency appointment at opticians. Was really shocked when told to cover the eye not effected to realise I could barely read the second line on the chart with glasses! Thought it really odd when the optician got the colour charts out, but soon began to realise the significance. Makes you realise how quick the brain is in adapting and ignoring the bad eye.
Anyhow, got referred to eye clinic in hospital - by this time, I’d done my research and realised that it must be optic neuritis - but still had to ask what was wrong with me - I don’t know why they don’t tell you straight rather than you have inflammation of the optic nerve - also the possible implications - but to be honest I thought it could be lyme’s for me as I’m a keen outdoor person and that seemed the logical explanation. The eye clinic were really thorough - loads of blood tests and a MRI and referral to a neurologist as I did say I suffered from migraines. Bloods ruled out everything including Lymes. I was hoping it was a one off. MRI came back abnormal - but non specific distribution. Neurologists then explained that there is a 50/50 chance of developing MS after optic neuritis over 15 year period. He decided best do a lumber puncture and a further MRI but this time with contrast. Lumper puncture came back positive. MRI showed new enhancing lesion. Just been diagnosed (well still waiting for letter - but pretty sure that’s what he said) so from no all migraine related to possible to probable to diagnosed in 18 months in total. Now waiting to see what happens next!
What have I learnt?
Ask if you can have a copy of the letter that is sent to your doctor, as if you are anything like me, the appointment goes in a blink and then you start questioning your memory - at least if its written down it’s there in front of you.
Write down any questions you think of to ask at your next appointment so you don’t forget when your there.
For me - this forum has been a blessing as I’ve found that you seem to have to drag information out of the medical profession - at least here you can look for advice - for example when I had the lumber puncture I was not told anything about keeping hydrated etc. When I looked up on here I found out that for some reason coke was really good to drink to avoid the headache - seemed to work for me! Most of all - people on here know what it is like to go through all the uncertainty and the waiting and at least you don’t feel that you are alone.
Welcome. As said before, to the club we don’t want to belong to.
You are usually sent a copy of the letter the neurologist sends to your GP. So although there can be a delay in receiv8ng the letter, you will get it.
It’s a good idea to take someone with you to neurology appointments. That way there’s a second brain to try and remember all the information. And yes, it’s also a good plan to write down any questions for the next appointment. Just don’t forget to get the list out!!
Do you know whether the neurologist has diagnosed relapsing remitting MS? And assuming the answer to be yes, which disease modifying drugs you will have available to you? Also, when you’ll get an appointment with an MS nurse? If you’ve not been given the contact details of an MS nurse, then you can phone the neurologists secretary to ask for the contact info. You may well get more useful information about DMDs from him/her.
Thanks for your post. Yes I asked which type and he said RRMS as apparently in PMS you don’t get Optical Neuritis. Asked about DMD - and he seems to have changed mind on that one. When I was CIS he said ‘ We may decide to put you on DMD’ now i’m actually diagnosed he said that the jury is out on DMD and that i’m well - which kind of implied that they weren’t going to offer any!
Phoned up MS nurse (got details off the MS Society website!) - she has said that I haven’t been passed to her yet - but she looked at my notes and said she will wait to speak to neurologists - haven’t heard back. So two months on after diagnosis and none the wiser. Got another MRI in a month then a 6 month wait after that to see Neuro again. So far that’s all I know. So despite my best efforts of phoning secretary and MS nurse looks like i’ll have to wait. Found out about newly diagnosed days, again through the charity, have been told that I will be given plently of notice by the secretary - but i’m Not holding out much hope. To be honest doesn’t really bode well for the future. Just hoping that I have benign MS and won’t need the medical professions help!! Not sure if this is your experience. Maybe its because i’ve only had one clinical attack they can see (the optical neuritis) - he didn’t really explain why I had changed from probably to receiving a diagnosis- I assume the changes on the MRI scans in combination with the positive CSF test - I’m hoping the letter will clarify. Do they normally give you a MRI every year? Maybe they are seeing how active my ms is before deciding what to do.
Once again thanks for taking the time to reply.
I’m going to watch the documentary on C4 tonight - should be interesting.
I had optic neuritis as my 1st main symptom, although 3 years prior I had half a numb face for 3 weeks. My doctor had referred me to a neurologist appointment, which I cancelled as it’d got better! I was in hospital for 2 weeks as it was complicated with a deep sphenoid sinus infection and was advised that it was probably a CIS and that was it. 3 months later I had a second relapse and a further mri which showed more lesions. However back in those days it was very much watch and wait. Since 2005 I’ve been very luck with very few symptoms except numbness & tingling, with a couple of incidents of vertigo but in 2015 I had another relapse. I did my own research and asked for a vit d test, which came back very low, and advised I wanted to have DMDs. I’ve also adapted my diet to the OMS protocol. So to clarify I had 2 MRIs in 3 months to confirm changes in lesions and confirm RRMS. Since then I’ve had nothing until a couple of years ago and had two more in that time and I think the are thinking of doing another due to me having more symptoms whilst on DMDs. I believe once you have RRMS diagnosis they want to get you on a DMD to slow the progession. Good luck Sharon x
Thank you all so much! Apologies for not replying sooner, I didn’t get a notification to say anyone had responded! I am due for my second MRI tomorrow but have not received a follow up appointment so need to chase it up. Although I have a rotten cold today which has knocked me for six, and aggravated my leg pain. I’m hoping that while I don’t have and coughs or sneezing they will let me go ahead. My husband came with me to my first appointment and took notes so that was a blessing and I’ve finally (after almost 8 weeks) received the letter to my Doctor from the neurologist. It confirms MS but stresses the need for further tests before a full dx can be issued. I don’t have access to an MS nurse but will ask when I chase the follow-up appointment with my Neuro’s secretary. In the meantime my GP has put me on Bacloflen and Amitriptyline for my pain. It’s still early days but I am getting some relief.