Hi Emma, I’m no expert but I would’ve thought with positive LP and brain lesions you at least meet the criteria for CIS. I thought that the current thinking was to treat and not wait for 2nd episode. I’m being classed as CIS and recently started rebif. Are you seeing neurologist soon? Do you have an MS nurse?
Sorry to high jack thread
Emma my sight In left eye is terrible. My balance is not good I don’t know how I get thow the day without falling over. I feel like I’m wanting a positive LP Just so I can start meds I’m praying the next attack isn’t my right eye I’d have to stop driving and give work up. Does your sight get worse when you start to warm up or worry.
I fully understand how you feel. It did get worse at the beginning when I got hot. However, I can’t see very much now so I don’t notice it. I’m petrified of it attacking my good eye as it has ruined my vision already. In a way you want a positive LP so you can get answers. I’m waiting to hear what he decides for me now. Had my LP end of Jan and still waiting for full results. I’m lucky that I have a nurse who I can contact as he’s great.
Just recived more blood results I didn’t expect them. Test show typical findings in a patient affected with coeliac disease so he has refered me to the gastroenterology if necessary to confirm diagnosis with a small bowel biopsy.feels like I’m falling to bits now
Im really sorry to hear that stuff is pilling on. Seems to be happening to me as well and I also feel like my body is falling to pieces and is taking my mind with it. I hope things get sorted for u as quick as possible. Ive started a high “dose” of tumeric, as evidence suggests that it can help slow progression of auto-immune conditions; and in a curry Im not finding it the hardest medicine to take. Might be worth asking your neuro about. Im also planning on Ceylon cinnimon for the same reasons. I at least feel that I’m now doing something psoitive while waiting forever on the NHS.
Thank for your reply sorry to here about situation bob i will take what you have said aboard il just plod on for now
Crikey Gaz, as if your world wasn’t hard enough already.
General advice when going through testing for coeliac disease is not to remove gluten from your diet. If you do, the test results from a biopsy won’t be accurate. So keep eating normally throughout the diagnostic process.
Coeliac disease is a bugger alright. But there is so much more awareness of it now than in years gone by. And the gluten free food is a vast improvement on when I was a child and one of my brothers had coeliac. His food was truly awful. The bread was like sawdust, it came in cans which had to be boiled then cooled (big cans made good ‘stilts’ with string through holes in the sides!). He had weird biscuits too. And my mother had to check this great big book of foods to check ingredients before he could eat anything. I even remember her washing the flour off jelly babies!!!
So, it’s manageable nowadays, changes in diet won’t be so hard as they used to be. (I hope you don’t have too much of a fondness for beer though, there’s gluten in that!)
Sue
Still waiting for LP appointment ??
Yes I’m Still waiting for LP appointment ??
LP next Friday at Salford roayl anyone no how long it takes to get results plz
Second attack optic nerve confirmed yesterday in my right eye this time. recovered quickly this time thank god I can’t help but think this would not of happened if I’d been on DMTs do I have to go blind before I get diagnosed ?
Hi Gaz, sorry to hear you’re going through all manner of nonsense at the moment. My first MS clue if you like was optic neuritis but it was years after that before I started on the drugs. I’m no expert, other people on here have loads more knowledge than I do, and I’m not on here as often as I’d like to be. My understanding is that the drugs won’t necessarily stop something happening, but they should lessen the effects when something does happen, and should reduce the frequency of anything happening.
Keep us posted on how you’re getting on
Smidge
LP done yesterday got there about an hour early was shown to my bed straight away was offered some dinner it was very nice. LP done about half hour after I hardly felt a thing I sat on side of bed lent forward on table this time and was so much Easrer than being on my side. Just 1 hour flat on my back and then aload to go home. Side affect just a headache this morning. Doctor said results should take about a week. Can I just say all the staff at the Salford royal were just the best ever thank you
I had my LP done at Salford Royal they were amazing !!
Phoned secretary my LP results are back she won’t tell me what they are she said the doctor will send them to me. is this normal practice?
[quote=“Gaz”]
Phoned secretary my LP results are back she won’t tell me what they are she said the doctor will send them to me. is this normal practice?
[/quote] Absolutely! Medical secretaries are very experienced people but they are not medically qualified and should never give out results like that over the phone. It is not like ringing the GP surgery for your blood test results where the info would have been authorised for release to you by surgery staff by the GP . The L.P. results are in but they are of little relevance or use to you until those results are interpreted in the context of your medical history and previous test results by the neurologist. A secretary would be likely to be disciplined or even disposing her job if she was giving out results like this.
LP results lgG normal lgA normal lgM 0.41 low. CSF lgG index 0.74 slightly high. CSF lgG synthesis normal. Oligocional bands on CSF pending Anyone know what this means ?
I think the most important thing for MS diagnosis with lumbar puncture is Oligocional Bands which involves a further test on the fluid drawn. These bands are present in most (but, of course with MS, not everybody!) patients with MS. As you know I HATE Dr Google with a passion but there is good information on Wikipedia and the MS Trust and MR Society sites about the bands and MS. The problem is that the test for bands in your case is still pending so the report will be of little use until you get the complete results.
Thanks for your repley. Any idear how long the rest of the results will take.
Dunno. You guess. I’m holding a piece of string; how long is it? Sorry to be sarky but noone can tell you and even if you had ALL the results NOW what real use would they be to you? I know it’s easier said than done but hang on in there until your next Neuro appointment when s/he will be able to pull all the information in your case together to give you a diagnosis - if, of course, that CAN be done.