Results day Feeling sick.
How did it go? Sorry, only just found your post on page 4.
Tracey x
Hi, yeh, how did it go hun?
pollx
Hi…I haven’t been on here because I have been trying to digest the news that I was given on friday. My neurologist who I have known for 8 years told me that although my symptoms indicate very strongly that I have MS the test results came back clear. He was fully expecting to deliver an ms verdict… and I was fully expecting to receive one… so when he told me that I didn’t match the criteria I was shocked. The key indicator was the lumbar puncture that came back clear.
Based on these findings and despite testing negative for neuromyelitis optica (devics disease) twice, my neurologist is referring me to the Walton Clinic where he feels they will be more qualified to deal with things. He feels that I will probably get a diagnosis of neuromyelitis optica or certainly on that spectrum.
I really don’t want ms but I dont want devics even more! I remember being scared rigid about that possible diagnosis 8 years ago because the outlook was so bleak. I realise things have progressed and developments have been made since then, but it is still generally worse than ms.
Oh bless you, I know it’s pointless saying this but do try to stay calm until you have seen the Walton Clinic. You say you have already had negative tests twice for devics so hopefully it won’t be that. Probably the worst thing about Friday is that you still don’t have a firm diagnosis and I always found the worst part was the not knowing and imagining the worst.
I will keep my fingers crossed that the Walton Clinic don’t keep you hanging on for too long. At least once you have a diagnos you can begin to come to terms with it. I also hope it is nowhere as bad as you fear.
in the meantime
Tracey x
Hi again. Sorry to read you are no nearer a diagnosis.
And I fully identify with your words about which desease you`d rather have.
That was me when my flimsy PPMS diganosis was replaced by HSP. HSP carries a 50% chance of being passed on to my kids and grandkids.
Hope you have better times at the Walton hun.
luv Pollx
Thanks…Now that I have had a few days for everything to sink in, I am going to take it as a positive thing and try to ignore my buzzing/tingling/etc… and I am really looking forward to a B12 jab as my levels are below the minimum level which could be exaserbating things. Apparently you get a mega boost of energy after having one…and by God do I need one!! x
Thanks…Now that I have had a few days for everything to sink in, I am going to take it as a positive thing and try to ignore my buzzing/tingling/etc… and I am really looking forward to a B12 jab as my levels are below the minimum level which could be exaserbating things. Apparently you get a mega boost of energy after having one…and by God do I need one!! x
I’m not surprised you feel drained. You poor thing.
Like you say the B12 injection will make you have more energy and give you strength to keep going til you get a definite diagnosis. I really hope when that diagnosis comes you will get a magnificant team around you to help you. At least then you will know what you are dealing with. It is horrible being in limbo.
Be thinking of you and I hope the Walton Clinic will have some answers for you.
Take care.
((((hugs))))
Shazzie xx
Hi, yep try and stay positve the B12 injections help me. I too am in limbo after a sort of myelititis attack 5 years ago. Recovered then progessively getting worse.
Cant see how you can have devics if the blood test has come back negative.
Moyna xxx
Hi… thanks for your replys. Apparently the devics blood test is only 60% accurate so that is a 40% margin of error. Because I had completely discounted that diagnosis as it came back negative, I can now understand why my neuro is sending me to the Walton Clinic (particularly as it is only my spinal cord and eyes that are affected currently). So it is more tests and a waiting game I guess… What fun! x