Can anyone give me anymore advice, i have been on the forum before but feel I need to come back and speak to people again. I feel I cannot go back to the doctors again because they think i am making these symptoms up and are now sick of seeing me and just want to send me to speak to someone about psychological problems. I know there is something wrong with me and that these symptoms are not going away. It all started with really bad bouts of dizziness and lightheadedness back at the beginning of February now, and these continued for about 6/8 weeks; doctor said it was labyrythitis. At the beginning of March the numbness/ pins n needles started in my right forearm and right leg and have never went away to this day. I have been for brain MRI what i paid for privately, which came back clear, neuro carried out other reflex tests etc and told me no Ms and discharged me. MSK specialist who i was under for shoulder and hip pain sent me for lumbar MRI; this came back clear too. Following on from that I have had over the past few weeks feelings that my whole body is on fire at times, stabbing pains under my left rib cage, the worst toothache on the top right side of my mouth, feelings of internal tremors, these have been coming and going but the numb forearm has stayed and the numb right leg has stayed and seems like it has developed numb patches which move up and down my leg and foot throughout the day. I don’t feel like my leg or arm is weak and I can use it ok but the numbness is driving me crazy!! I can’t go back to see my doctor because he thinks I’m crazy, I just don’t know what to do next. Are these symptoms of MS? I am doubting myself because of what the doctor has said (probably stress/ labyrythitis/ psychological) but I know what I am feeling and I am scared. Has anyone else got these symptoms? Are they MS symptoms? Where can I go from here?
What age are you ? Are you in your young 20s ?
It is really frustrating when you have symptoms such as you describe and no diagnosis to hang your hat on. Some of the things you have are MS-like but by no means exclusive to MS. I know that it is hard to accept a non diagnosis when you feel ill but I’m not really sure what to suggest. Your MRI was clear as was your lumbar puncture and manual tests from the neuro. What usually happens is that people report tests showing legions but still no definitive diagnosis - I have never heard of anyone with clear investigations going on to be diagnosed at a later date.
That is not to say that you are not genuinely experiencing your symptoms. I don’t mean to suggest that for a moment. Neurological investigations tend to be based on elimination. It sounds, to be honest, as though MS has been ruled out. As to where you go from here, I am not sure. My knee jerk reaction is to go back to your GP and be quite assertive about your need for further investigation. I understand that you think that they are sick of you but - too bad! it’s probably not MS but there are other things, have you seen a general neurologist or were they just looking into the possibility of MS?
Have you had any blood tests? Sometimes, even a vitamin deficiency can mimic MS symptoms. Please go back to your GP and tell him your latest symptoms. It’s not for you to second guess what may be wrong with you. That’s your GP’s job. Is there a different doctor you could see? Sometimes a different doctor will have a different approach.
I agree with what others have said.
It is unlikely you have MS with a clear MRI, and even more so that you would be diagnosed with it.
It is technically possible to be diagnosed on symptoms alone, without MRI evidence, but as MRI is the single most compelling piece of evidence these days, it would take either a brave or a reckless neurologist to diagnose without it.
I do not think a hasty or reckless neurologist is at all a positive thing, so I would be somewhat wary (to put it mildly) of a neurologist who was willing to stick an MS label on you, despite the lack of evidence - especially as it appears your neurological examination was not abnormal either. What is there to diagnose on, if they don’t have a shred of evidence?
By “evidence”, I don’t mean they disbelieve your own reports - it’s just that patient self-reporting doesn’t count when we’re talking about clinical evidence - which must be something they can see or find, that goes beyond patient descriptions of their own experience.
Occasionally it is possible for MS not to show on MRI in the very early stages (lesions too small perhaps), but this situation doesn’t go on forever. Basically, the longer you have symptoms, the more likely something would show on MRI - you can’t go years and years without any sign of damage. So sometimes MRI does show something eventually, even when it hasn’t at first.
However, it would be a very expensive hobby to keep having MRIs at your own expense, just in case anything has changed, so your best bet would be to wait until there’s any new or worse symptoms (suggestive of recent activity), and then persuade the NHS to investigate again. There does not seem much point pursuing an MS diagnosis before that, when there is (so far) nothing to support it.
I think you need to stay open to the possibility it may be something else (including psychological), as you have to go where the evidence leads - and at the moment, it’s not leading to MS. So don’t rule out other explanations, as they don’t mean you’re either mad or lying. If you stay open-minded to any possibility (I mean from the medical professionals, not quacks or weirdos), you increase your chances, if not of definite answers, then at least of some route that might help.
Would there be anything to lose, if, despite not intuitively feeling it’s psychological, you said you would be open to exploring that? Worst case: it doesn’t have any effect - you strengthen your case for pursuing other avenues. Best case: it does have some effect - you feel pleased you gave it a chance.
Hi,thank you all for the replies, it means a lot to hear from people.
I am 40 years old. I have had all of the blood tests for B12, iron, diabetes and everything has came back negative. I didn’t get a lumbar puncture just an MRI of lumbar spine. I have asked the doctor to refer me back to Neuro for further investigations because the neuro just said that it wasn’t Ms and discharged me. i did go in and see another doctor and he has asked ME what else they can do, he’s obviously read through my notes and thought I was making things up so they aren’t able to help me anymore. I feel so helpless and the numbness down my right side is making me go insane; it’s just not going away. Will a MRI of my C-spine be worth trying to pursue? I read somewhere that lesions don’t show up on lumbar spine anyway? I just done know what to do next and I can’t deal with the not knowing.
I’m afraid that ‘not knowing’ is an occupation hazard of having hard-to-pin-down ?neurological troubles. If there were easy answers, you would have them already. Given that there clearly are no easy answers, my suggestion would be to step back for a bit, accept that the ‘not knowing’ has no remedy right now, and stand down from banging your head against a medical brick wall because that is often weary work with nothing to show for it.
Time is the best diagnostician, or so they say. If something new and alarming happens (and I hope that it doesn’t) then it will be time to re-enter the fray. For now, it seems to me that your best option might well be to try to put your worries aside and not let them cloud your days. A lot of sweet life can pass by unnoticed when one is preoccupied with unproductive worries, as I know only too well.
It’s very rare but not impossible to have spinal lesions only, but would probably point to something other than MS. Besides, spinal lesions only affect parts of the body below the site of the lesion, so some of the symptoms you describe (dizziness and light-headedness) couldn’t possibly be caused by an as-yet unsearched-for spinal lesion. So no, in my opinion, not worth pressing for further MRIs at the moment - it’s rather unlikely they’d show anything the brain MRI didn’t.
Lesions in the lumbar spine are relatively uncommon in MS - that’s why they typically only scan brain and (at most) cervical spine.
I was unusual in having a full spinal MRI from the off, but only because they suspected a straightforward slipped disc. If MS had been the suspect from Day 1, it’s likely they’d have done brain only.
I did turn out to have a thoracic (chest level) lesion - but NOT without brain lesions. When it led them to scan my brain, they found six in there already. So my route to diagnosis was a bit the wrong way round compared to most people’s, but only by chance - not a deliberate tactic. It’s not that spinal lesions “don’t show”, but they are certainly less distinct - mine was almost missed, and I never did get a straight answer about whether there were one or two, or exactly where, because two different locations (both thoracic) were mentioned, so I still don’t know if it was one long lesion spanning several vertebrae, or what. But the brain lesions were the clinching factor. The spinal abnormalities were “interesting” and prompted further investigation, but weren’t really the smoking gun.
In your place, I would drop the MS line for now - unless anything changes dramatically, there won’t be any new evidence, which means they still won’t be able to diagnose. It’s not just a matter of personal opinion - they have strict evidential hurdles they have to get over, so without them, it wouldn’t matter how many different neuros you saw - none of them would be able to diagnose. Even a neuro who believes it will turn out to be MS can’t diagnose until all the boxes are ticked. I think mine knew it was MS the first day he saw me, and certainly after the brainscan showed six lesions. He wasn’t able to make a formal diagnosis for another eight months - just not enough boxes ticked. Unfortunately, nobody explained this at the time, so I didn’t know what the obstacle was - I didn’t know there can be a big gap between what they believe, and what they’re able to prove. And I was a patient with an abnormal neuro exam and clear brain lesions. You have neither of those - AND a clear LP, so not a single thing for them to hang a diagnosis on.
More than 100 diseases and conditions look a bit like MS, but only one of them actually is, so it doesn’t mean your symptoms aren’t real - it just means it’s looking like one of the other 100+ things. Rheumatology surprisingly has quite a lot of overlap with Neurology at times. Has Rheumatology ever been suggested?
All good advice…maybe now is the time to step back from wanting a diagnosis that nobody can give you & start to think about what HAS been offered to you. You have no obvious MS symptoms so it’s futile (& costly) to ask for more tests. You’ve said that your arms & legs still work ok, although the different sensations are annoying.
Perhaps speak to your GP about symptom control, & then try to move on rather than keep pushing for a diagnosis that nobody can give you. Things might be different for you, one way or another, in a few months time.
Hi Tina, they’ve never suggested rheumatology to me at all, the doctor just kept sending me for blood test after blood test and all came back negative, so that’s how I pursued brain MRI simply because of the dizziness and lightheadedness at first and Because that went on for so long. Obviously when that has came back clear and the lumbar spine MRI has came back clear too I just keep wondering what I can do next because I still have symptoms. Your advice is great, thanks for replying it means a lot. X
Thanks Alison, I am trying hard not to worry and i am so greatful for all this advice. I am going to try and relax a little and see if that relieves the symptoms a bit. It’s great to hear from people on here; the comments and advice are always good to listen too.
THE SQUEAKY WHEEL GETS THE GREASE.
it shouldn’t matter what you THINK your doctor THINKS of you, if you are truly suffering from unresolved symptoms you need to KNOW what they are caused by and KNOW what to do about them.
so your MRI indicated no MS? congratulations! sincerely this is good news. and so what else could it be?
we forum users do not know, and you certainly do not know but it is the job of your doctor to find out. if your doc seems to be the type of white coat that searches only for the immediate and easy answers, you should maybe seek out one who gives a toss about the profession they are a part of.
but having said all that… one question comes to mind… what happens when you flex your head forwards, as if trying to press your chin to your chest?
Hi, yeah brain MRI was clear and lumbar spine MRI but I was under the impression nothing showed on lumbar spine MRI anyway, only MRI of C spine. I don’t have anything happening when I put my head forward, is that the l’herm sign? That doesn’t happen to me so I suppose that’s a good sign?
just to put my pennorth in -
your gp should be trying his/her hardest to find out what is wrong with you.
have they forgotten that you, as a taxpayer, pay their wages?
a good gp should be referring you to different departments, as tina says, like rheumatology.
be (politely) assertive and keep on at them until you know what’s going on.
try not to get obsessed with it all because we don’t want you getting depression on top of all the other stuff.
mindfulness meditation is an excellent tool for keeping worries under control and is great for pain relief.
your gp may know of local courses that he/she can refer you to.
i can’t imagine what it’s like for you.
my diagnosis came in october 2008. i first saw my gp with symptoms in march 2007.
so 18 months in total.
please get past this disappointing situation.
sending hugs to you
L’Hermitte’s sign is commonly associated with MS, but it’s NOT an official diagnostic test, and certainly not everybody with MS has it. I never have, in over 4.5 years since diagnosis, so not having it proves nothing - but far more reassuring are the clear MRI and normal LP, which would be very unlikely in someone who in fact had MS all the time.
I do not know if I believe constant pushing for answers will actually do you any good.
Unfortunately, medicine is not all as black and white as we like to think. We assume that if something goes wrong, we can go to the doctor, and they will know what it is and fix it. But one of life’s harsh realities is that not all of medicine is like that. Sometimes only a lot of time and patience will reveal the truth. If you did have MS which, for some mysterious reason, is not showing up on ANY test, I guarantee it won’t stay that way forever, and eventually something will happen that casts new light on it, and maybe paves the way to diagnosis. But that might be next week, next month, or in ten years.
At some point, you have to take a decision about how long you want the question still to dominate your life, when nothing suspicious has been found, or whether you’re content to let it go, and see what the future brings.
Obsessing about a question nobody has the evidence to answer will not benefit your physical or psychological health - if anything it’s likely to make symptoms worse.
If it is MS, it will be provable when the time is right, but not before. If the evidence just isn’t there, nothing you can do or say will hasten a diagnosis. It will choose when to reveal itself.
For me, that day came some years after first symptoms. I did not associate waking unable to feel my feet with previous sporadic and miscellaneous symptoms. That was how I came to be investigated for a slipped disc (which quickly became an investigation for MS), and did not link it with a long history of feeling under the weather at all. Only after I was diagnosed, I announced with some surprise: “Oh! I haven’t been feeling very well!”
My neurologist said: “No, you haven’t, have you?” But up until that day, he wouldn’t have been able to diagnose me if he’d wanted to. Not even if there was money in it.
Thanks for replying, hopefully it is something that could be investigated by rheumatology, I will have to speak to my doctor again about that. If you don’t mind me asking how did your symptoms start? Were they really severe at first and initially last a long time? It’s the length of time that they have been going On for with no indication of going away as yet what is worrying me at the minute…
I’m sorry your symptoms are bad. I’d say carry on trying to find out what’s up and maybe take some counselling /psychological help . That is what I am doing :).I myself have found it very easy to fixate on an illness , but of course it does not mean I have it . Diagnosing these sort of things seems a bit of a nightmare sometimes . Best of luck x
Thanks for the advice. I am trying to be positive and refrain from thinking about it or reading up about my symptoms anymore. Are you having the same kind of symptoms too? X