Forum

diagonises

Hi, I am new to this site and recently been told i have imflammation of my spinal fluid by my nuero. My mri spinal and brain come back clear and my neuro doc is confused as to what is the matter with me, he said that my spinal fluid is the same as a patient with ms but still does not know what is causing this. He put me onto steriods as he would do with a patient with remit relapse ms to see if this would help me. But what i am really wanting to know is have any of you been diagonised on spinal fluid alone?

Many thks in advance xx

Hello and welcome :slight_smile:

Some people with MS do not have lesions on their MRI scans, especially in the early years, although a really good MRI scanner and high resolution images might show something up that standard MRI would miss. Lumbar puncture results (spinal fluid) are also variable: about 10% of people get a negative result despite definitely having MS, but then it is also possible to have a positive result and not have MS.

Because there is no test that is always positive in MS, it is possible to diagnose patients completely from their symptoms, history and clinical exam, assuming all other possibilities have been ruled out. And so, yes, there are people who have been diagnosed with only a positive LP and there are even people who have been diagnosed with all negative tests. It’s quite unusual though.

I think, if I were you, I would be asking what other tests would help to work out what is going on. For example, have you had evoked potentials or blood tests for all the possible mimics? Ultimately though, time will tell - and if you have the support of your neuro and GP in the meantime, your care will not be very different to someone with a formal diagnosis.

I hope the steroids help, and that you get some answers soon.

Karen x

Thk you so much for your response Karen, i have had a evoked potential and bloods done. The only thing that has come bk wrong is lumbar and bloods they done on same day. I am very lucky my neuro and doc are very supportive but i am at my wits end at the minute. As you probally know only to well, the steriods are not making me feel gr8 at min :frowning: But gonna stick them out

Thks again xo

Everything being negative apart from the LP makes MS very unlikely, but it doesn’t rule it out. I would think that what you do next depends on your symptoms and whether or not the steroids help: hopefully your neuro and GP will be able to guide you. If they are out of ideas and want to wait and see how things develop then you could always suggest high resolution MRI, but you may have to accept that getting an answer is going to take a while :frowning: There is maybe a wee bit of comfort in at least knowing that you don’t have anything requiring urgent treatment as it would have shown up in the tests? Not knowing still sucks of course :frowning:

Kx

Yea its the not knowing is getting to me :frowning: and the fact the neuro said my imflamation markers on lumbar is of someone with ms. I will ask about the high resolution mri. Yes i am very grateful i dont need urgent treatment but i just want answers now, this has been going on to long :(…

My gp is gr8 and she is gonna contact me when the report is sent out from neuro see if she can make anything out of it. Its my own fault for not asking loads of questions but my mind just went blank

thks again xo