This thread is so much more interesting than I’d thought initially. There are so many of you who really know their stuff. Ziola, you’ve learned so much. I’m finding that whenever I think I understand something about MS, I’m actually wrong. Or I might be kind of right in maybe 75 or so percent of cases, but not all. This site is so amazing for learning about this poxy disease. Good article CC.
Sue
Reading through these posts makes me see I was lucky to have had MS written all over me from Day 1 or things going awry. It didn’t feel lucky at the time, but at least it was a straightforward and short road to dx! Some of you have had such a difficult time, and I don’t think I would have dealt with that terribly well.
Alison
do we have m.s. because we have lesions or do we have lesions because we have m.s.?
perhaps lesions are not as important as we think.
has anyone figured out why pwms have lesions?
They’re scars following inflammatory attacks. Although that doesn’t always apply to PPMSers (I don’t think). When I was first told ‘you have lesions in your brain and spine’, I asked what lesions were. The stupid doctor didn’t know how to explain them, just said something like ‘just places that look a bit different’. No wonder I went away confused as to what had happened and avoided neurologists for the next 5 years.
Sue
hi sue, hope this explains
Magnetic resonance imaging in primary progressive multiple sclerosis.
Thanks CC. That accords with what people are saying (roughly). People with PPMS tend to have fewer brain lesions and more spinal lesions. This would account for the difficulty in diagnosis and the later diagnosis generally. It does make me wonder whether the RR/SPMS type is in fact a completely different disease to PPMS. Many of the symptoms are different, the fact that the locations of lesions as well as the number differs.
Sue
Thanks CC. That accords with what people are saying (roughly). People with PPMS tend to have fewer brain lesions and more spinal lesions. This would account for the difficulty in diagnosis and the later diagnosis generally. It does make me wonder whether the RR/SPMS type is in fact a completely different disease to PPMS. Many of the symptoms are different, the fact that the locations of lesions as well as the number differs.
Sue
I thought the machines were either Tesla1.5 or Tesla3. As I understand it T2 is one of the variations on the MRIs themselves. T1 weighted, T2 weighted, for example give different weightings to white matter, grey matter and so forth, so you get a variety of pictures of the same thing.
My diagnosis, was a weird one really, with very typical first symptoms!
Back in 2000 i had a numb face. I was referred to a neurologist, but cancelled the appointment as my symptom had gone and i was a busy mum with 4 young children. I then comletely forgot about the episode and got on with my life.
5 years later i had felt weird all day. I told my husband to pick the kids up from school and to sort their tea as i was going to bed - i never do this so he knew something was up. I woke up around 7pm after 5 hrs of sleep and had double vision. I came down the stairs on my bottom.
We qent to a&e that night and i was admitted to my local hospital. The next morning at around 5am i was whisked off for a head xray, followed quickly by a cat scan and then an MRI - They had found what they thought was a brain tumor. Which was fairly quickly decided it was actually a sphenoid sinus infection the size of a golfball sitting next to my optic nerve, which was what they thought was causung the problem. I was transferred to the QE in Bham, had an operation to remove the infection, but my double vision was still an issue. That was when i was introduced to an MS specialist neurologist as apparently there was also a lesion on my brain which they now decided was causing the double vision. That then led to a 5 day steroid infusion and being told i had CIS and then sent me home. No meds for me in 2005 and was told to get on with my life and that it may not develop into anything.
3 months later i had another relapse. Hospitalised for another 2 weeks a clear spinal tap, but was still given my RRMS diagnosis due to increased lesions.
I had rrms for 20 years when I agreed to take part in a study which involved 4 MRI’s a year it was at that point I was told I had progressedfrom rrms to secondary progressive MS.
I initally paid for my first MRI. there were high signal foci in the deep white matter of the brain suggestive of demylination, but on reflection and seeing the actually age of the candidate 1951 would suggest nothing to worry about. (Or words similar).
I sent my films to my uncle in italy who is a radiologist and he said they were without doubt demylinating and he would suggest further investigations, he did not mention any specific disease. So this encouraged me and i kept going. when i saw neuro in 2006 some time after this i had clear lesions on my spine. over time i have had 3 clear lesions only on spine in different places. I also had a VEP test in 2007 quite high figures on left side (where i am comprimised, over time until 2015 i had several more MRI ONE with contrast all showing lesions in different areas, then the VEP late 2015 which showed more changes to my first results and that is when i was told i had Primary Progressive MS (USA some call spinal MS). IT took from 2006 to 2016 to get that result.
Hi Sue
as a newcomer it seems to me that we have a desperately conservative doctor community who wait until absolute certainty of damage to diagnose MS (a bit like waiting until we have identified 3 completely destroyed Ukraine towns until we say we are sure Russia has a military).
and yet the research is showing that early use of DMTs can materially change the long-term development curve of MS.
I have VEP high, massive fatigue and some bowel leakage, and a sibling with RRMS. But my MRIs are clean - so no diagnosis.
Where can I buy some DMTs without prescription? The risk/reward for me of going on DMTs now is very positive (big long-term benefit in lower MS development if I am preclinical MS now, side effects very limited). I can always come off them later if find I don’t have MS.
Thanks for any thoughts.
Best wishes
I had no lesions anywhere but was diagnosed in 2003 as I had slight inflammation at the base of my brain, I was in hospital for 5 days with what turned out to be my 1st ms episode - Id lost the use of my left side. My mum also had ms, plus during my test’s the marker for ms flagged up. I was diagnosed 4 months after my 1st episode.
Steff
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