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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

Hi Montygo3!

I had a CT scan, MRI scan, ‘Evoked Potential’ tests, several physical tests to assess the extent of the symptoms I reported and finally a Lumbar Puncture before a firm diagnosis of MS was eventually made.

In light of my experience, I wouldn’t anticipate any neuro being able to make a firm diagnosis based on the results of a single test.

Are the steroids helping and how long have you been on them?

If you don’t mind me asking, what symptoms have you been experiecing?

Best wishes,

Dom

Hi Dom,

Steriods are making me feel really yucky at min :frowning: only been on them 5days.

My symptoms are quite wide spread and strange, my gp diagnosed me with fybro a couple of yrs ago but things were getting worse and more things happening. This is the sec time i have been to a neuro reference what has been happening and i have to say he is fab, he is listening to me and going by what my gp and myself are saying what i was like before all this happened.

my symptoms are:

stiffening from sitting to standing untill i get moving

dizzy

pressure back of neck and funny sensations

heavy legs

there are others but my memory is a bit upside down at min, the confusing thing is other stuff is happening but is it to do with the same issues?

Hi Montygo3

Welcome to the site. The problem is that lesions tend to show up when they are active. I have no lesions showing on my brain but they’ve shown up on my spinal cord and I had raised levels in my spinal fluid. Have you had any spinal injuries that could cause these symptoms as if not they do sound like MS? From my experience the fybro diagnosis is often used in the early stages when drs don’t actually know what is wrong with you. It often takes a long time to get a firm MS diagnosis, but in the meantime the steroids will help you get back on track and ease the inflamation although they do have side effects (as you have discribed).

If you do get a diagnosis please know that life goes on and it does not neccssarily mean you will be continually affected adversely - its a very individual disease and their are lots of disease modifying drugs (DMDs) to delay progression. I have never been on DMDs as they weren’t available back then, but I’ve lived a very full and active life after being initially diagnosed at 18. I’m near retirement age now and have only had to use a wheelchair for the last 6 or so years - so have done quite well. Some people never need a wheelchair and as I’ve said the DMDs can delay the progression, and research into the condition is on-going so there is lots of hope for your future.

I hope the steroids settle things down for you - unfortunately the rest is a waiting game. I hope you don’t have MS but if you do as I’ve said life goes on and its amasing how people cope.

(((((Hugs))))) Mary

Thk you for your response Mary,

To be honest i just want answers like many of ppl out there, it is a releive to know it is not all in my head as i was made feel by friends and family :(( .

I am very gratful to my neuro for listening to me and offering me all the test espec the lumbar punture as he was unsure wether to do it or not. Only my ace bloods come bk slightly raised i dont think he would of offered me it.

My gp is waiting on his report to see if she can make anything out of the results cause my mind went blank with shock when he told me about the lumbar cause like him i was expecting a clear result

xoxoxo

Hi, I had lots of tests, as I was dispalying typical PPMS symptoms.

Now 15 years down the line, I have been diagnosed with a very questionable condition.

Spastic Paraparesis/cause unknown.

My symptoms are;

no mobility at all, but upper half of body good

bladder/bowel problems

spasms and stiffness

SP often gets mis-diagnosed as MS.

luv Pollx

Hi,

Have they talked about Transverse Myelitis? I was given this diagnosis for 4 years at first before I started having more relapses and lesions to finally come up with MS as a diagnosis. Just keep an eye and keep a note of all your symptoms and dates. There is a great support network for people with Transverse Myelitis too.

Hope your symptoms ease off soon. Just take things easy…

Debs

Hi thks again for comments, i have never heard of Transverse myyelitis but will mention it to my neuro when i see him in June. I have been thinking none stop about things that have happened to me and for how long to say the nxt time i am up cause i keep forgetting to tell him, my memory is shot lol Always remember to late :slight_smile:

It sounds awful but i just want to be a my nxt appoint cause its the not knowing that is annoying me

thks Sarah

Hi Debs thks, i will mention it to him the nxt time i see him. I really do have to keep notes as i keep forgetting what i want to say and ask

thks again Sarah