Is it possible I've had it for years and it's gone undiagnosed?

Hi, I’ve got an appt. for a neurologist coming up after seeing the symptoms of MS and bursting in to tears. :stuck_out_tongue: I feel like a hypochondriac, but I have to know.

Since I was 17 years old I have had growing problems regarding pins and needles in hands and feet, complete numbness and loss of circulation in them, shingles, a lot of dizziness, a constant headache, I’ve developed an occasional stutter, breathlessness, I literally pour with sweat a LOT, I cannot differentiate between hot and cold on frequent occasions, I shiver in baking heat (though usually I’m burning and about to pass out) and I feel like I’m on fire in freezing cold. I usually feel like I’m burning from the inside. I need to pee but can’t go, I’ve had UTIs diagnosed as bladder infections since I was 8 years old and get them at least a couple of times a year. When walking I stagger/wander, my balance is skewed, I get chronic fatigue to the point that I can barely move, and have had constipation since I was about 7/8. I frequently need to urinate, I can’t stand for long without needing to sit down as I go faint very quickly. I also have bleeding gums which wil never leave me alone. :stuck_out_tongue:

I get spasms in my right leg, particularly the calf, a lot. I get a ‘trapped nerve’ in my neck and right side of my jaw that feels like I have electrical charges running down my face and it’s impossibly painful. When I was 14 I was on Venlafaxine, an anti depressant that has since been banned to under 16s, and I got brain shocks (electrical currents that feel like your head/brain is being electrocuted by lightning) and am now wondering if that has something to do with this, as I used to get dizzy and nearly pass out all the way back then.

I feel like I’m floating in a muzz when I’m out and about, like I’m there but I’m not there.

I have bad depression and anxiety.

I need a diagnosis. My last doctor was as helpful as a chocolate teapot so I’m praying I’ll finally get the answers I need. In your opinion, could this be MS? Obviously I’m terrified that it will be as I have no idea what to expect from it in the future, but at the same time I need to know what it is that is causing these problems so I have something to fight. Could it be MS and could I have it go undiagnosed for that long? I’m now 29, pressing on the dreaded 30.

Hi Missy,

So, has anyone (i.e. your GP) actually mentioned MS? If not, what leads you to think that is what you have?

I’ll repeat pretty much what I always say in these circumstances: there are at least 100 other conditions capable of producing similar symptoms to MS. MS is called a diagnosis of exclusion, which means it’s never the first suspect. All other explanations have to be ruled out, before an MS diagnosis will even be considered.

So it’s far too early to say whether your symptoms may or may not be MS. Even the neurologist will not be able to say on a first visit, but will probably simply order tests.

I think it’s fair to say that most people who are diagnosed with MS have had it for a number of years. I’ve seen “five years” mentioned somewhere as the average length of time from onset of first symptoms to confirmed diagnosis. Of course, that’s only an average, so within it, there will be some people who were diagnosed very quickly, and others who took a lot longer.

I do not mean that I think you have MS. From symptoms alone, it’s impossible to say. I’m just answering you question about whether it’s possible to be undiagnosed for years, and to that, the answer is yes.

On the bright side, the best and only guide to what people can expect from MS in the future is how it has treated them in the past. So if you have had MS for literally years, but it’s only now becoming serious enough to be diagnosed, or even investigated, that points to a non-aggressive course.

I’m not dismissing your symptoms, because you obviously haven’t been “fine”, but if they’ve stayed at a low enough level for nobody even to suspect MS for years and years, you clearly don’t have the most aggressive form of the disease.

I am a fellow venlafaxine hater (though I was prescribed it as an adult), and also got the “brain shocks” on trying to withdraw. Although I absolutely detest this medication, and certainly regret ever agreeing to try it, nothing in my research since has suggested that MS is in any way linked with venlafaxine use.

With hindsight, I do feel that my “depression” - for which the venlafaxine was prescribed - was, in reality, an aspect of undiagnosed MS. So I do think there’s a connection in a way, but not the simple one that venlafaxine “caused” the MS. I think, if I hadn’t already been ill, I would never have been prescribed venlafaxine.

If you don’t mind my saying, you do indeed sound rather depressed. Are you being treated for it still? It’s not normal, for example, to “dread” being 30 - that is the prime of life! I’ll be 50 next birthday, now that is starting to feel old!


Thank you Tina. I suffer from Recurring Depression Disorder and Severe Depression Disorder and have since I was a child so I don’t really relate that to any other symptoms I have to be honest. The 30 thing is more because of ‘where’ I am with my life - a lot of friends had the same sort of thing, I’ve noticed my first wrinkle so I’m just being cranky about it. :wink: I am sadly still being treated for depression - in my case it’s most likely genetic as a lot of my family have had depression etc. I never thought Venlafaxine was linked to MS, but thought maybe some of the symptoms maybe due to side effects as I’m back on it and have been for a while, or residual after effects when I was younger. I got the brainshocks before coming off them and they were EVIL. Eurgh. Not a great drug to be on. :frowning:

A friend of mine with MS mentioned it, and of course my knee jerk reaction with the similarity of the symptoms was to panic. I just like to try and work out ‘worst case’ scenarios, kinda hope for the best and expect the worst, then I can try and prepare myself for some of the things that could be sprung on me - never gonna manage that but I’m trying, I feel like I’m doing something, and at the very least a neuro. can rule things out to put my mind at rest as my last doc for over 20 years prescribed me pain killers and gave me diabetes checks and that was it. At the very least this has given me a greater understanding of the condition to help my friend better in the future.

You’ve put my mind at rest somewhat re: it being more likely to be non-aggressive if any form at all. I think, like a lot of people, the worst thing is not having a clue and wanting to know what something is in order to deal with it.

Thank you for the reassuring reply. :slight_smile: And I know age is just a number… I just liked being able to say ‘in my twenties’ :wink: