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Confused no disgnosis

Hello,

I hope someone can shed some light on my confusion. I was recently admitted to hospital for a second MRI and an LP, i was then given 3 days of steroids, the thing is i have not had a diagnosis, does the fact that i was given steroids mean that i do have MS? The nurses at the hospital weren’t very helpful and i have been unable to speak to my neuro.

Hi Apple-pie. Disgraceful that they haven’t told you anything!

I think it is very likely that they will not give you a firm diagnosis until they have the MRI and LP results back.

I also think that they have given you steroids to see how your symptoms react to them, because if you have RRMS than chances are that you will get some symptom relief from the steroids.

Why oh why they couldn’t have told you this is beyond me!!!

When do you go back for MRI and LP results? Depending on the results of those you might get a diagnosis then.

So at the moment no, you do not have a dx of MS. However, considering that they have given you steroids, I think it likely that they are certainly thinking that it looks like MS.

They really should have explained this to you and it’s no wonder you are confused!

Hang on in there love. When do you go back to neuro?

Pat x

My neuro was really good when I got admitted, they wouldnt give me steriods though, I was able to walk again but I have loads more tests ahead of me. The will not diagnose unles they knoe for sure, a prime example of this, first time i went to the docs with my problems he said, Im thinking neurological, I will be honest it points to a stroke… Wow I thought im 26 and a stroke, nice one doc, 100k a year for wrongful information. I am in the wrong game.

Be strong and chin up, everyone on hear has had to wait around. Just ask them for some info.

Hi hun, no I doubt it love. My story goes back to 1999, when I also had MRIs and LP. other tests too, and then steroids. Still no dx.

luv Pollx

Hi guys

Thanks for the info, i’m not due back until October which seems an extremely long time to wait, is this the usual?

I have an EEG VER on the 5th and a follow up with neurologist on 27th, I would say yes, somepople wait months for appointments.

Because I was admitted and couldnt walk they run MRI brain and spine, LP but as I started to walk they let me go. I have had results for all of the above, and more tests to come. unfortuntley as you wil see time and time again, #waiting game

I have had a 2 weeks with a significant improvement, now things seem to be heading the the wrong direction again, thanks for all your comments, it’s good to hear from people that know what it’s like x

Hi All,

We are all in this waiting game, its so shocking that we have to wait for years for answers. Chin up everyone.

Jan

Yes pretty usual. The LP results take a while.

One day at a time is the way to go… and it’s nearly September already.

Pat x

Well i got a shock yesterday, my appointment with the neuro has been moved forward to september(thank god) and although i was relieved i contacted the hospital to see if i could change the time as the appointment is for 9am and will be difficult to make, to cut a long story short i was told there were no other available appointments until November although i could see the MS nurse… now i’m not sure i should have been told this as i have not had a deffinate dx from the consultant…but i guess now i have my answer and i only have to wait until the 7th of sept to have it confirmed. Thanks to everyone for your comments it’s nice to know there are some people that understand but don’t feel the need to feel sorry for you all the time x

Hi Apple-pie, it’s not unusual to be refered to MS nurse even without dx and still waiting for dx… it has happened to people on here before.

Wait to see what neuro says. Just don’t want you to feel sure of dx only to be told you are still in limbo land when you see the neuro. You have not got a dx until neuro tells you you have MS.

Very pleased your appointment has been moved forward.

Pat x

Thanks Pat, i got a copy of the letter sent to my GP this morning, it’s very confusing, i’m hoping someone will be able to help me make some sense of it…

MRI performed on 1st August was compared to one completed earlier in the year and showed further lesions notably in the left frontal lobe and the mid corpus callosum. The findings are consistant with a diagnosis of central demyelination.

Visual evoked potentials demonstrated a significant interocular latency of 139 milliseconds on the right and 125 milliseconds on the left, CSFrevealed 7 white cells, slightly raised protein at 0.44g, otherwise normal constituents except that oligoclonal bands were positive and the CSF IgG index was unequivically raised at 1.97. ANA and anticardiolopin were negative, serum B12, TFT’s, U&E’s and LFT’s were normal, serum folate was low at 4.3.

Does any of this make sense to anyone, sorry to keep pestering, i would be really grateful for any information.

Thanks

The left frontal lobe is what it sounds like - the left half of the front part of the brain. The corpus callosum is the major white matter tract (big bunch of nerves) that joins the left and the right sides of the brain. The frontal lobe isn’t particularly specific to any condition (I’d need to know what the lesions looked like), but the corpus callosum is a bit of the brain that is strongly related to MS.

The VEP bit is saying that your visual system has been affected (basically that the messages are slower than they should be).

I don’t know a lot about blood stuff, but I do know that the CSF IgG index bit means that your LP was positive as far as MS is concerned (i.e. that there were unmatched oligoclonal bands in the CSF compared to the serum).

I can’t see how they can possibly not diagnose MS with new lesions, some of which are typical of MS, plus a positive LP. (Sorry.)

Karen x

Thanks Karen, i think it will just be a relief when it’s confirmed at least then i can start to look forward x

Donna x