OMG Gaz, I’ve just scanned through this whole thread. I still can’t believe the run around you’ve had. It’s been 5 months since you started this game. Being told you have MS, then not, then more tests. There was a point on 1st February when you said ‘not long to wait now’!
I’m honestly amazed that you still sound relatively calm and reasonable about it.
Boblatina is absolutely right about Oligoclonal bands in the CSF being another piece of a jigsaw puzzle. If they are not there, it doesn’t mean you haven’t got MS (something like 5% of people with MS have no ‘O’ bands in CSF). But if they are there then you probably have. And of course as you are now a master of waiting for tests and test results, the LP results will be revealed whenever they damn well like!
Crikey Gaz, I truly hope you get a definitive answer in the near future.
Yea sue I’d be pulling my hair out now if I had any lol. I can’t believe they sent part of the results. I read the results letter only to get to end and realise the most important bit is not there with no indication of how long it would take to get the rest!!!
it says my csf lgG index is slightly high . I’ve looked it up and 80 to 90% of people with increased csf lgG index have MS. Can anyone advise if this is correct plz
It took 8 weeks for my LP results to come back ! Neorlogosist said as their were positive bands it was a definite diognosis, with an 80 % chance of further relapse he also said that if it had been negetive it would have been a 20% chance. He said he would refer me to the ms nurse as I should go on a DMD but still waiting to hear.
Thanks Sarah I’ve just been to see GP she agreed with my findings on dr google and said she would do her best to speed my band results up so hopefully not to long now. Problems with my left leg at the moment feels like a lead weight and keeps giving way. Mussel probs in my left arm keeps twitching.
Nero appointment this morning to my amaizment he thinks my illness is dew to cealiac diesese even thow my results aren’t back from my biopsy. He’s ordered yet another blood test this time for anti-MOG antibodies if posative he wants to treat me with steroids. In the meantime he wants me to go gluton free. And to see me in 3mounths. I asked him about the McDonald crytrier he smirked and said that the lesion in my brain steam is in the wrong place for it to be ms. So I pointed out that I’ve optic neorsis in both eyes since my last mri so would show lesions on both optic nerves so would fit the crytrier. But still thinks its related to cealiac. I’ve looked online there doesn’t seem to be a connection between anti MOG and cealiac. At my wits end now any avice would be great full many thanks.
Hi all quick update anti mog came back negative what ever that means. Been to see Nero rehab today when testing the muscles in my eyes she noticed my right eyeball wobbling side to side. I came home and googled it to my amazement top of the page nystagmus posable cause MS. This is just madnes if you read back thow my post at all my symptoms and results and I’m still in limbo land. Update in couple of weeks when my latest MRI results are back.
Update saw nero on Friday he has put me on high dose steroids 500mg a day methylprednisolone and is arranging for me to see an ms specialist Nero who I fort he was. It looks like he was thinking all down to celiac disiseae. My last mri showed lesion on my optic nerve. I googled all my symptoms one at a time and everything pointed to MS so I printed it of and took it with me. The thing that got me most was that he said my Brian lesion was not in a commen site for MS but I showed him that it was so doesn’t fill you with conferdence. Hopefully in the right place now and I will start DMTs .
Recived copy of letter to GP from Nero saying that he thinks its possable NMO spectrum disorder even thow aquaporin 4 and anti mog are negative. But then agreeing with me that all my symptoms and tests Obands posative etc are very suggestive of MS. It also says Affecting all four limbs Hoffman positive and clonus positive. So looked it up and it says possible symptoms of MS. I am starting to think my Nero is mad what’s the point in haveing test if you choose to ignore the results.
Your neurologist appears to be an utter numpty Gaz.
What does your GP think? Have you been to see him/her? Is there someone else they can refer you to who’ll definitively diagnose you with something, probably MS since most of the signs you have indicate that?
Why on earth suggest you have something that you’ve tested negative for rather than something you’ve tested positive for?
Am I (are you?) missing something here? Is there some secret no one will tell you Gaz? Are you in fact an alien from the planet Zog and what you’ve got is normal on that planet?
Sue it does not seam right it’s like he is diturming to not diagnose MS for some reason. Looking back he first said he thought it was NMO until the discovery of celiac disease then he said he had thinks my symptoms were to do with celiac disease but because my symptoms are still there after being on a gluten free diet he now thinking it’s NMO again. I’ve looked into NMO and 80 / 90% are aqu 4 positive I’m negative. positive o bands are not a useful maker in NMO but they are in MS I’m positive for o bands so yes I think he is a numpty
Just phoned Salford to chase my appointment and they haven’t even received my referral yet. From the 19th October looks like I’m going to be on these striods for a long time