Hello all,
I’ve been lingering around the forum recently which has already provided me with some useful infomation and provided me with some comfort.
About me: June 2016 I had optic neuritis, I put the inital poor vision down to stress as I had recently started a new job, I was planning a wedding (August), and buying a second property. I ignored the symtomps despite going completely blind in my left eye, thinking it’ll be okay! I eventually got admited to hospital and was given steriods via IV and spent a week having checks (also found a cyst on my pituitary gland). While I was in hospital I had an MRI scan but I didn’t get to see a Nurologist as the hospital doesn’t have an inpaitent department. MS was mentioned pretty early on due to the optic neuritis but deep down I thought that this wouldn’t be the case, it had to be the stress.
I saw a neurologist consultant this week for the first time since I left hospital who looked at my MRI scans, to my surprise he said that there are two other leigons on my brain but they are not definitive enough to diagnose MS. He scared me actually as he seem to take everything so seriously which I wasn’t really expecting. He intorudced me to a MS nurse, provided me with their contact details and said he would be referring me to a MS consultant.
I tend not to use Google for my illness that I may have as I think I could end up diagnoses myself with all sorts but at the same time I’ve done enough reading to know what road may be ahead. Up until this point I’ve been able to deal with it really well but suddendly I am terrified.
I’ve noticed lately in bed that my right arm and leg get numb and cause some pain. Last nigth my leg was completely dead in the middle of the night, does anyone think that this is this MS related? My hands/feet are and have always been freezing cold, and I do have some other symptoms but not sure if I’m over thinking every now.
Does anyone have any similar stories when their MS started with Optic Neuritis?
Hi Yas Neves,
I’ve not yet been diagnosed but have had MRI with 3 ?lesions on my brain. Seen ms neurologist and waiting repeat MRI, lumbar puncture and evoked potentials. I’ve not had any experience of optic neuritis but do get altered sensation in my feet overnight and also upper arms throb with numbish hands. If it’s been bad overnight it lingers a bit during the day. I’m also a bit shaky and sick first thing. The ms neurologist wanted me to meet the ms nurse. I’ve contacted her but she said that we don’t need to meet until I’ve got the results of the tests and a formal diagnosis.
I think they need to be sure before they give a definite diagnosis. Have you got a date to see the ms neurologist? Like you, I’m terrified but I’m trying hard not to overthink things and diagnose myself. I’ve been reading the forums for the past month whilst waiting and have found it really helpful. I’m sure somebody more knowledgeable than me will be along soon with some helpful advice. Have you got supportive friends and family?
hi yas and smurf
it is natural to dislike the idea of having a chronic condition like ms.
however a diagnosis is not the end of the world.
i, personally, think that the limbo living serves to prepare us for the eventual diagnosis.
it means you develop a strength of character.
naturally you want to find things out, but instead of googling outcomes, google treatments.
i found out loads of stuff, such as H.B.O.T. (hyper barric oxygen therapy) and LDN (low dose naltrexone).
on diagnosis you should be offered a DMD so try to find out about these.
good luck
carole x
Thanks Carole,
That’s an excellent idea about googling treatments which I’d started doing. The ms neurologist briefly mentioned them so I wanted to have some clue before my next appointment. I’d not heard about HBOT or LDN so will have a look at those too. At least being diagnosed means you can start treatment and it must be better than not knowing I suppose.
Thanks for your replies Smurf and Carole.
I am not feeling as angry or upset today, I’ve picked myself up. I have some great support around me including my husband and my employer.
Does anyone know if everyone has legions on the brain e.g. those who don’t have MS?
hi smurf
HBOT is available at the ms therapy centre.
it is mostly donations based, although they always offer you a membership if you pay monthly by standing order.
LDN requires a prescription but unless you have a very forward thinking GP you may have to get a private prescription.
the LDN itself is not available on the NHS but is fairly low in price.
put a post on here asking how to get it because there are others who swear by it.
carole x
I’m not sure where my nearest ms therapy centre is but I’ll have a look. I’ll also ask about LDN. I’m slowly getting my head around things. Got appointment for repeat MRI though today. It’s 14th November so at least I’ve a date for that now. Just waiting for lumbar puncture and evoked potentials. Having done some reading I’m considering declining the LP as don’t think it’s essential for diagnosis purposes. What do others think? Are the benefits worth the risk?
Hi Smuf,
I am recently diagnosed (January this year) and hopefully can help if even a little. Firstly though please excuse the brute honesty but i wish someone had been 100% honest and up front with me from the beginning.
For the LP i was admitted to hospital, received lots of test and had a diagnosis very quickly (4 days) so didn’t have time to look up the dangers associated with this and it was the last test i had just to double confirm the diagnosis. while i was not aware of the dangers at first i really didn’t want one as it sounded extremely uncomfortable and painful. i decided to have it because i wanted to make sure if i was leaving that hospital preparing to face MS i wanted to be sure i actually had it. I wasn’t sure if there were other conditions which caused leigons but i new i wanted to be 100% sure of the diagnosis before i planned how to deal with it. i suppose it takes away the element of you thinking after ‘but is it really MS?’ ‘what if they were wrong’ etc. the LP itself was nowhere near as harrowing as i had imagined (being left for 3 days to imagine an extraction of spinal fluid all sorts of images were running through my mind when the time eventually came) it was just a tad uncomfortable with a touch of pain which on a scale of 1 - 10 i would say is a dull 3 and only for about 3 minutes of the 20 minutes it actually takes.
the numbness is also something which i experience and yes very annoyingly in bed. if its a numbness i tend to just leave it to work itself out although easy to say when mine isn’t painful of keeping me awake. sometimes it feels more like a muscle ache in my knees and i just try to treat this like any other muscle ache and put some deep heap on it and a compression bandage for 1 night and this stops it for a few weeks.
Hannah x
Thanks for your honesty Hannah. I’m just unsure from what I’ve read that an LP is essential with regards to a diagnosis so don’t want one unnecessarily. Like you I’d rather be certain though especially if faced with treatment choices. Are you on any treatment?
I have been on tecfidera since my diagnosis which I luckily have not had any really bad side effects from. I get occasional flushing 2-5 times a week but it goes within 15 minutes and is not painful just a tad uncomfortable. Unfortunately I’ve had 2 relapses since then so I will be changing this in the next month to something which hopefully reduces the frequency of the relapses
I’ve been reading up about treatments in case I’m diagnosed and then offered any. Wanted to have some knowledge beforehand though guessing they’d give me info and time to consider options if any.
Not really sure if my symptoms would be classed as a relapse to be honest. Mine started with altered sensation occasionally in my feet overnight on holiday in June. I felt really unwell August - September like a virus I couldn’t shift so was on sick leave for a while. Been treated with a month’s antibiotics in case it was Lyme though negative bloods which is common given high false negative rate. On Vit B12 injections due to low levels in blood. Current symptoms are occasional altered sensation in feet when sitting and in bed. Plus throbbing arms which starts from upper arms and works down to my hands. No issues with mobility, vision (though I wear glasses anyway) or fatigue and symptoms don’t occur when mobile. Symptoms are always bilateral. I know these could all fit for ms but thought if it was a relapse they would be better by now.
Plus feel shaky and sick first thing which eases over the morning.
Hi Smuurf,
Are the symtoms that you are experianing all the time? Or do they come and go?
I think the biggest reason why I’m struggling at the moment is because I like to be in controll and I currently very much feel out of controll, I don’t know what the next steps are or what the plan is. I phoned the MS Nurse yesturday to ask some quesitons but they haven’t come back to me yet.
It’s now been a week since my appointment and the shock is slowly easing.
Hi Yas,
My symptoms do come and go. They are worse at night. During the day I’m not too bad once the shakiness has passed in the morning. Have you got the ms nurse’s email? I googled my nurse’s email address and she responds pretty quickly to email. I’ve decided that I’ll probably go for the lumbar puncture in the end. Whilst not absolutely essential I understand that it’s part of the diagnostic process and I’d rather know.