Hello. I am new to this forum and website. I have been generally unwell for about twenty years, whenever one health problem was sorted out (eg when 18 suddenly started getting tonsilitis at least once a month and had tonsils out eventually; never had as kid) another would spring up eg sinus issues. Have always felt something must be underlying all this. More recently I have had optic neuritis twice and pins and needles in hands and feet that get worse when I bend my neck. Also vitamin B and D deficiencies. Am recently having trouble thinking of words/getting the right one out. Luckily have very good GP and was sent to neurologist when asked to have tests for MS (term had been suggested previously by consultants, optician etc). MRI clear, although the one I had a year ago when had neuritis showed lesion. Neuro feels I do have MS and is referring me to specialist at King’s. Apparently no point treating yet as side effects worse than how I am feeling now. This website has been wealth of support and info. I have to be monitore for 5-10 years and in mean time am just “waiting” for relapse. Family supportive, but worried husband just putting on brave face for me. I just don’t know what or how to feel. I am going from being very upset and crying lots to thinking nothing has relly changed yet, I am same as last week, month, year…frustrated as was hoping diagnosis would lead to treatment and may have started to feel a little better, always pale tired and ill looking. I just wanted to talk with others who are feeling/have felt the same.
Hi, I’m really surprised that they haven’t put you on any medication… Is this a path you want to talke? It just sonds like you’ve had it worse than me. I had optic neuritis just over a year ago, complete loss of vision in my left eye for 3 weeks… Then I had Lhermitte’s (which is the bending neck tingling thing), which sounds like what you had… It’s been 2 months since my formal diagnosis, and I only had the lumbar puncture last week, but they’re putting me on to treatment… From reading the NHS website and from talking to my MS nurse (who’s been doing if for 17 years), if you’ve had a couple of episodes within 2 years they would “normally” medicate you… I’m just wondering why they aren’t for you. I think if you wanted to you could pursue this…
It’s daunting, but if it’s going to halp in the long run then maybe its worth asking?
Hope this helped? x
You mentioned a B deficiency. Sometime GPs dont fully treat this and can lead to nerve damage. Tests are not 100% conclusive. B12 defieciency can linger for years making you feel unwell and if left untreated can lead to MS symptoms. Th book on pernious anemia by Martyn Hooper is a good read. Unusally daily injections are required if nerve damage has happened. If you can persuade your GP to trial the injections - you can not over dose on them.
Moyna xxx
Hi,
I am unclear whether you have definitely been diagnosed or not. Do you have a letter stating this, in black and white?
The reason I ask is because: “feels you do have…” is not quite the same as a confirmed diagnosis, and may explain the reluctance to treat. As only one lesion has ever been seen, you do not yet satisfy the “multiple” bit of multiple sclerosis. It’s not unusual for people to have both symptoms and some evidence supportive of an MS diagnosis, but still not quite enough to get a concrete diagnosis - and access to treatment. It’s also not unusual for neuros to “feel that something is MS”, before they necessarily have all the evidence to make a firm diagnosis. This, in effect, happened to me. Following a visit to the neuro, and a review of MRI results (lesions in both brain and spine), I was under the impression I’d been diagnosed. However, when the letter came through, summarising the consultation, it said only: “probable MS”, which seemed a bit of a backtrack from how sure he’d seemed in person.
At the time, one thing I did not understand was that whilst his experience told him I did have MS, they have quite strict rules about the evidence required for diagnosis, and if they don’t have that yet, you won’t be formally diagnosed, no matter how strongly their practical experience tells them that’s what it is.
I was sent home to await another MRI six months later, as there must be proof it’s a recurring/ongoing thing (“multiple”) and not a one-off event. For me, a repeat scan did show new lesions, which was the missing piece of the jigsaw that let him move from what he felt, to what he could prove.
So I wonder if something similar has happened to you? Your neuro “feels”, but can’t yet prove?
A lot of people refer to this state as being: “in limbo”, as they are neither one thing (pronounced clear, and discharged), nor the other (confirmed diagnosis of MS). Instead, they’re somewhere in-between, with a lingering spectre of MS, that might or might not turn into a formal diagnosis if there is some future episode. This could explain the: “Don’t treat, but continue to monitor” approach. IF there was going to be additional evidence, they’d certainly expect it to show up within 5-10 years, unless you had a very benign form of MS. So that might explain the timescale too.
As an aside, tonsilitis isn’t an MS symptom, so whatever your problem was with recurrent bouts of that, it wouldn’t be due to MS. MS sometimes causes facial pain that could be mistaken for sinusitis, but does not cause actual sinusitis, so assuming your sinusitis was correctly diagnosed, that wouldn’t be due to MS either. Although MS is often described as an immune system problem, it’s nothing to do with having a weak immune system, and therefore getting loads of infections. On the contrary, MS is rather like having an over-zealous or trigger-happy immune system, with an unfortunate tendency to friendly fire (mistaking important bits of you as hostile). So there’s no reason a person with MS would be at increased of tonsilitis or sinus problems. There is an increased risk of certain infections, especially chest or urinary tract infections, but those are not due to a weak immune system, but other complications of MS, such as swallowing problems causing food to accidentally get into the lungs, where it sets up conditions for an infection, or incomplete bladder emptying, which again, is unhygienic, and could prompt infection. So it’s not completely true that MS can’t cause infections, but it only causes certain types, and even then, not in everyone. It doesn’t lower immunity across-the-board. The immune system is up-and-running TOO well, and attacking what it shouldn’t. 
As a parting thought, I found reminding myself nothing had really changed, and I was the same person I’d always been, was a very helpful way of looking at things. If you know you’ve been feeling ill for years already, but have coped with it all that time, somebody slapping a name on it doesn’t change anything. You’re still the same person, and probably had the same illness waaaay before anybody told you what it might be. So all that’s changed is your state of knowledge - and knowledge, as they say, is power. It may sound crazy, but I actually got some relief from knowing they’d found something physically the matter, and I wasn’t either terminally lazy, or the world’s biggest hypochondriac.
Tina
Thank you TassieBenya, Moyna and Anitra. Have read and digested your comments and advice, thank you for taking the time to reply. Yes Tina, not actual formal diagnosis yet, but like you “probable”. Thanks again. Sarah x