Hey all…Im wondering if everyone here has undergone more testing for their diagnosis than just an MRI, i’ve just been reading a link regarding Hughes Syndrome and im now feeling a bit uneasy.
My diagnosis was quick…ruled out carpal tunnel and sent for one MRI thinking i had a trapped nerve only to turn up alone for a follow up appointment and be told i had MS… quick walk across the floor and a few questions.done.
According to the neuro i have lesions on my brain and t something lesions to cervical spinal cord along with fatigue,every classic sensory symptom and l’hermittes…but i have never had csf taken and the only time they took blood was when i started beta interferon which i stoppped…i felt ill the whole time i took it and the side effects never subsided, i also suffer major migraines and headaches and have had optic neuritis once and that was 3 years after diagnosis.
Hi, well I was tested for Hughes Syndrome (also called sticky blood). Many folk are wrongly dx`d with MS, when it turned out to be Hughes. It came back negative.
it sounds like you were dxd quite quickly. I am still being tested......14 yrs down the line. It isnt necessary to have an LP if an MRI is clear cut.
If you now wish to have your dx looked at again, have a word with your MS nurse, eh?
Had ver of the optic nerve, lumbar puncture and mri, twice the second time with contrast. I was diagnosed after ON and weakness on right side with numb feet and hands and residual visual symptoms. All tests came back positive and my mobility was iffy, has been up and down ever since. Fatigue is the worst symptom, if youve noticed massive tiredness which wont go away with rest then perhaps you have a cns disease. Hope you get answers very soon,
Its making me wonder…the best i have felt in years was after they gave me steroids for the optic neuritis…felt normal! I was diagnosed after 3 months tops. I’ve also suffered rheumatic fever at 18 which i didnt realise can cause cns problems! Oh its a big can of worms, i think i will ask my MS nurse as advised.
Thanks poll and bren…keep it coming everyone im interested x
I was dx with MRI only, just had a chest xray to rule something else out. (Not sure what). It only took 3 months to receive a diagnosis but I’d been having symptoms for over 20 years. (10 0f which I never sought medical help). I changed hospitals because of travelling issues and was given another MRI. This was good as it meant I qualified for Betaferon.
I never had optic neuritis and have only had one lot of steroids which made me feel terrible.
I have had 3 MRI scans of head, spine and full body, lumbar puncture, blood tests, envoked potential and physical exam to check my movement. I also had a standard eye test.
Hi, I was diagnosed with no tests at all. I did eventually have an MRI but only so they could put something in my records. The MRI was after I had started on betaferon. Tbh, I think the consultant was pretty certain and although, when I do read links about things like Hughes, I do wonder a bit, I’ve never really questioned my diagnosed, I think the neuro got it right! I was diagnosed in 1996 so perhaps they are more precise about diagnosing nowadays. Cheryl:-)
I don’t think APS Antybody test for Hughes Syndrome is mandatory but it should be. You probably looked at the MSRC info on it; but if you go to the HS website there are other diferences sometimes between Hughes and MS. http://www.hughes-syndrome.org/
i’M SORRY FOR SOUNDING HORRIBLE BUT i REALLY HOPE YOU HAVE HS.