So after a long time lurking I finally had a follow up consultation last night with a neurologist…it’s taken neary 2 years to reach this point thanks to dismissive GP’s and a whole load of wasted time.
He was a bit slow off the mark as he wasnt aware I was coming despite my appointment being emailed to me but saw me anyway and tried to piece my results together. After telling me my spine looked fine and some chit chat he then dropped in that “I have more white spots on my brain than would be expected at my age”…and we have to do a lumber puncture.
He knows my concerns of MS so added that inflammation has a range of causes “as long as his arm” and that I dont present with “typical” MS symptoms described as L’Hermittes, Optic Neuritis, double vision, pins/needles, localised or spreading weakness, heat intolerance and fatigue. My symptoms are more body wide, twitches, buzzing, shaky hands, early fatigue of muscles, tinnitus, painful hands and feet when exercised. I do have cognitive issues and had an episode of vertigo as they put me in the MRI scanner. These have been continual, and I cannot previously look back on an obvious RRMS type episode although there have been some subtle issues in the past.
A rheumo told me I was describing peripheral neuropathy in hands and feet (very dry skin) . My reflexes, strength and muscle tone were normal on examination and I believe my EMG and SSEP were normal except some “excitability of the muscles” which the doctor didnt see concerned about. I had a lot of blood tests, all normal except borderline for Lyme disease.
What else can cause that those brain spots?
Not sure if I am living in hope or denial now.
im not sure about the white spots, but some of my symptoms are similar to yours and my neuro said either ms or fibromyalgia, so im waiting for mri results. maybe you should ask ur gp about possibility of fibro because it does have a lot of similar symptoms to ms, even some of the medications are the same to treat it. As i understand it, anyone can get spots on the brain caused from a wide range of things such as bumps on the head (boxers tend to have quite a few) so maybe that has something to do with why you have a lot, if it comes back that you dont have ms that is.
good luck
I had the same result after my MRI - “multiple white matter lesions, more than expected for a lady of this age”.
I was told these spots can be caused by ischemia (lack of blood flow through the small blood vessels in the brain ie: tiny stroke-like events) and was initially investigated for heart problems, blood clotting conditions, clogged arteries etc. These tests all came back completely clear, so I was then referred to another Neuro who is an MS specialist. He says the lesions are “non-specific” and do not immediately ‘shout’ MS at him, but I have had a series of tests done and am seeing him again in a couple of weeks for the results.
I have also read that migraines can cause these lesions, so there are a number of possibilities apart from MS.
Your Neuro is doing the LP to, hopefully, support his suspicions that you do not have MS…so this is a good thing. If the LP comes back clear then he will no doubt look at other alternatives. In my experience, they like to gradually rule things out until they can pin it down to one thing.
Good luck, and fingers crossed your LP is clear and you manage to find out what is going on real soon xx
Thank you both (above) for your answers/experiences.
you could have both periperhal neuropathy and ms
hi i had 7 plus lesions, neuro said age spots but didn’t say there were too many for my age. Also showed demylination. But neuro said nothing wrong.
I dont have migraine, have tigling/numbness, weakness, tremors, also have L’hermittes, double vision, pins and needles, paingul spasms in limbs and ribs. fatigue and heat intolerance.
I think some neuros decifer MRI results differently than others so its all rather confusing.
An LP would be a good step foward. Good luck, really hope you get some ansers soon. xxx