Hi Karry , they have done tests for all mimics and all came back clear
they said my vitamin B12 levels were high ?
but that meant my diet was good ?
They have done visual evoke test which as yet I have not got the results
When he tested my muscle strength in hands /feet
he said my hands were so floppy he was surprised I could function
When I move my eyes to follow the finger the pain is incredible in my eyes
I've had no nerve tests ? He said I may have inflamation
disease (ms) but as it's not showing in lumbur or MRI
they will need to do them again in perhaps a year !
thank you for your time and support it's very much appreciated .
Hugs
Wendy
I can only think the Neuro said you wouldn't be started on treatment yet if it was MS because you have not met the criteria for MS aka the Mc Donald criteria. There are criterias doctors have to follow for most medical conditions the world over and unless you fulfil this then you would not become eligible for diagnosis or DMD's.
The McDonald criteria requires the Neuro to fulfil Dissemination in time (DIT) and Dissemination in space (DIS) when diagnosing MS. This means that you have lesions in at least one of the typical MS stomping grounds like Periventricular, brain stem, spinal cord etc and that you have demonstrated more than one attack which would be found in either an enhancing lesion or a new lesion.
I wouldn't weigh too much on a negative LP as this is not always found in everyone who has MS which is the same with other conditions as well like lupus and rheumatoid arthritis and is called seronegative. I would be more interested in what abnormalities have been found on your Neuro exam ie reflexes because this is probably the most important tool in finding out out if there is a neurological cause for your symptoms.
Did you ask the Neuro what he thought was wrong with you? Have you had any nerve conduction studies done? Have you been tested for all the other mimics?
I'm sorry you haven't gotten any answers but just know you are not on your own with being in limboland and there are many members on this forum in the same situation as yourself. I know this doesn't help in many ways but sometimes just knowing you're not on your own is all you need.
Hugs,
Karry.
Thank you , kind words mean a lot . I felt like crying today when they said they will keep an eye on me and do more tests over the years for MS but they can't see it on my MRI and my lumbur is clear
So I'm left with these symptons worrying they are getting worse and I'm not being treated for them , it's the eye symptoms that concern me
I told him (neuro) my fears and he said if it was Ms I wouldn't be started on treatment yet anyway !!
Hi Melinda - thanks for reply
My story is long , but basically from July last year
I've had weakness in my legs to the extent it feels like I'm walking through thick mud , I have weakness and tingling /buzzing in my hands
hyper reflexes , strange vision
I was seeing a physio for neck pain over a period of 10 weeks , and the pain kept moving - from my neck to left side ribs , then my right side ribs etc she thought this was MS right away
I went to doc , was sent to neurologist
he brushed me off , I saw opthamologist
who saw the swelling at back of left eye
I went back to neurologist he said I might have relapsing remitting MS
and ordered the lumbur
Today I saw a different neurologist , I had to tell him the whole story and he's basically like oh god I've only got 30 mins with you!!
he said the lumbur was clear but after checking me over
he said my myscles are very weak
And he can't rule out MS but as they can't find it
in the MRI or lumbur I'm Undiagnosed
I get unwell with heat/in the bath etc
he told me now basically to go back to my doctor if I get worse!!
what gets worse than visual trail , seeing spiders
Numbbess and weakness in legs /arms
I've no idea where I go now
Thanks so much for your support as there is no where to turn
sorry for the long story
Ask for an OCT - picture of back of eye. It's very sensitive as a test. I agree your opthamaologist is sounding a little off. Who ordered lumbar MRI and why? No spinal cord to speak of in lumbar area.
Hi.
That's such a awful sight to have seen. I"m so sorry. And to see trails of someone's hands and/or arm movements is scary. You need to ground yourself with what you know for sure, one being your gp or optician has heard of this happening before; you do have a slight swelling behind one eye. So, you're not crazy. I don't have a good opinion of your opthamology dept. They gave you false information on MS and they blew off the swelling behind your eye?
Who ordered the mri and the lumbar puncture?
Suggestions: An appt with a neurologist; get a new opthamologist. record these peculiar optical events including where, when, how you were feeling at the time, duration, and anything else you feel is important.
Other than eye problems what leads you to conclude that you have MS? Maybe you do, but you need to see a neurologist for a more thorough examination.
Take care, be strong and assertive.
Blessings,
Melinda
I don't know about the seeing spiders, although I had an unpleasant encounter with a real one this morning, they all full of it with the age thing. I was diagnosed in January 2015 at the age of 45, so you definitely aren't too old.
Did you? was it the same thing? Have you had any other eye problems ?
Are you diagnosed with anything ?
Wendy
Haha I know what you mean , although I stayed quite calm as I knew they were not real but I couldn't understand why I was seeing them !
they were huge and so clear
I was shaking my bed covers though - just in case
I really need answers it's such a long road
I was sleeping , I woke up around 12.30 Am and saw these 2 huge spiders the size of hands climbing up the blinds I screamed out
it was frightening
I discussed with gp this morning and she advised I see my optician she had heard of it before , I have been having some weird eye things lately
but not much was picked up at my opthamology appointment except to be told they know whàt someone with ms looks like as soon as they walk through the door and I was too old at 44
They said I had slight swelling at the back of my eye
my lumbur and MRI have come back ok
? Help ....
Holy crap. If I saw 2 large spiders - even unreal ones - that then disappeared, I'd be in need of a straitjacket.
Odd , I had this the other day !
Hmmmm i've heard others mention a mouse but never spiders, that's a first um what exactly do you think you saw?
I'm sorry I don't have any wise words but I do think Melinda gave you some great advice.
Hugs,
Karry.