Seen a general neurologist finally after suffering for more than 4-5 months of symptoms now I can associate with MS. Practically I have all you can expect from a potential MS patient. I had no idea of MS until two weeks ago and only started to read/think about it after my neurological work-up .
So my neurologist did not mention Ms but like I said I have almost all the symptoms. Cat scan , mri of the brain and bloodwork unremarkable, though mri mentioned some likely chronic ischemic disease… the neurologist now says there is nothing in tests explaining/causing my “many”symptoms and she asks me to further have an emg (electromyography) for feet/hand tingling, numbness ( suspicion of peripheral neuropathy), and two referrals…see an ENT specialist for dizziness and loss of balance and see an ophthalmologist for blurry vision /poor eyesight. Well looks like she crossed out ms as a possibility already and looking for other explanations for symptoms. This is awesome but with all these symptoms I am still worried.
Question:
I read ms lesions can be seen on mri of the brain AND on mri of the spinal cord, both necessary for diagnosis as there are rare ms cases with no lesions on brain but with lesions on the spine. This is google info but it kind of freaks me out as I do not even want to think the neurologist might have skipped this simple diagnostic guidance. Remember I just had a brain mri and looks like the neurologist is depending on this unremarkable mri to rule out Ms and I have pain/burn on my spine if it means anything…With all the symptoms I do not have peace of mind. I might also be overthinking, you can imagine the anxiety in the limbo, suggestions?
thx
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Lonelytraveller
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My lesions are in the cervical and thorascic region with just a few brain lesions and ms was missed until I got a cervical mri. Be persistant and see another neuro if necessary, that is what I did. Best of luck to you
Rather than getting mentally stuck on a Google search which mentions the very very rare chances of someone getting a confirmed diagnosis of MS when they have no brain lesions, it might be worth getting your head around the McDonald criteria - these are what help "define" whether a patient does or does't have MS.
The worst problem with Dr Google is that there are no check-up mechanisms on whether people have correctly interpreted what they find online and mention of very rare instances of no brain lesions turning out to be MS is one of those situations - especially if you are classifying that very limited info as "simple diagnostic guidance"and have taken the view that a specialist doctor is ignoring what you found from a Google search. While there will always be crappy doctors around it's important to remember that a doctor has gone through nearly 10 years of training to get their basic medical qualification, and then has to do even more years of more training to become a specialist in any particular field of medicine.
The neurologist you have seen has referred you for further tests to narrow down possible causes of the symptoms you have mentioned and in trying to ascertain the causes of your problem that is an appropriate course of action. (Note that PwMS do not have peripheral neuropathies - they have a CNS problem which makes them feel as if they have abnormal sensations or lack of sensation in peripheral locations - and this is not the same as peripheral neuropathy).
If you have blurry vision/ eyesight problems then seeing an ophthalmologist for further examination/ testing is appropriate when your brain MRI does not show any abnormalities other than possible ischaemic disease (which, depending on location/s, could cause some of your symptoms). Ditto for seeing an ENT specialist regarding dizziness and balance problems. So many people read a list of MS symptoms and think/ fear/ conclude that MS is likely to be what they have when their "collection" of symptoms could actually have a "collection" of different causes.
You mention having pain/burning on your spine - MS lesions do not cause pain at the site of a lesion so an MS lesion won't be the problem, although other diseases that can cause lesions could possibly cause pain, or it could be be a spinal problem with a disc or a pinched nerve etc.
A common problem which arises with forums such as this one (and every other one on the internet!!!) is that many people who reply to questions like yours also tend to assume that the person asking the questions does have MS (although as yet undiagnosed), and often responses are posted which tend to reinforce a view that the neuro either does not know what they are doing, or isn't doing their job properly, or both. Sometimes it is worth seeking a second opinion, but in your situation you need to follow through with getting the tests done which you have been referred for and see what comes from those before looking for an opinion from another neuro.
Limbo land is never a comfortable place to be, but the neuro has not dismissed your symptoms out of hand and has ordered further tests, so all you can do is go with what is happening and wait to see what transpires. It's not easy, but so many people have to go through these processes with many diseases, not just with suspected MS. Good luck.
Get the other tests but don't be afraid to try another neurologist after they're done. Yes, it could be MS. Yes, it could be something else entirely. I still don't have spinal lesions, but I also didn't have any brain lesions visible on the MRI's until several decades after my symptoms started. MS is, unfortunately, very hard to diagnose for some of us. Keep researching, get the additional tests, and discuss your concerns with your current neuro. My very good neuro didn't discuss MS with me until he was absolutely certain, so it's possible yours is doing the same thing.
Hi Lonelytraveller 🙂You got Alot of good advice here-it's just a waiting game til you get answers... Must be so frustrating, but you must do the testing ordered for you.
My 1st symptom was simple partial temporal lobe epilepsy, where I had seizures during my sleep, causing me to wake up with really bad deja vous feelings. My GP didn't want to refer me to a neurologist, but when I had a few one day whilst I was actually awake and mum getting me to A&E after checking the NHS Symptom Checker, which had the result come out with Transient Ischaemic Attack (a baby stroke, if you will). I had a seizure ad the triage nurse was doing a pupil reaction test, and specifically on my left eye. That's when I got referred to a neurologist. Thankfully, this neurologist specialised in MS. He had me do an Evoked Potential Test, where there was something slowing down the signals from my left eye to my occipital lobe. That got me an MRI with contrast, and then a month or so later, I got admitted to hospital for a few days, where I had my lumbar puncture done, as well as a gene test for a condition called CADASIL, as a differential. The bloods to that had to be sent up to Scotland, because the closest centre that did it wasn't around where I lived (North West England). I got my Clinically Isolated Symptom diagnosis when all the results came back. I do not have CADASIL, which would be confirmed on a gene test by a Notch3 gene. Any abnormalities on that gene is recessive, but the gene I have is dominant so no issues on that front. It wasn't until a year after that I needed to visit that neurologist again, because I had a lack of sensation on the left side of my face, although there was normal sensation after my hairline 🤷♀️ So, he sent me for another MRI, again with contrast, and not long after I got my clinically definite diagnosis.
So, look for MS specialist neurologists in your area. They will be able to confirm whether you do, or do not, have MS. They'll also be able to get to the bottom of your symptoms and tell you what you have.
I have no lesions on my spine at all. Did you have a lumbar puncture? There are a number of things that overlap symptoms of MS. Good luck with all the tests and I hope they figure it out soon. I think not knowing is the worst thing ever.
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Is it?...must be my MS!
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