negative lumbar puncture still symptomatic

[rose54]

Hi Everyone, I am posting to see if someone else has an clues about being on prednisone and having diagnostic procedures for MS. I have been on prednisone for about 6 years,due to lupus, when I started having neurological symptoms the doctors started testing me for MS. I have a positive brain MRI with several lesions adjacent to the ventricles but not touching, all in the white matter, most of them oval and on both sides of the ventricles. I have symptoms and reflexes consistant with demylination.

All other blood tests have been ruled out,(lymes,sard,hiv,htlv,etc, etc), last one was LP, which came out negative.I have heard that prednisone can affect this test. I had a terrible LP headache and had to be flat on my back in severe head, neck and body pain for 3 weeks, not something I want to repeat. I was diagnosed with Sjogrens a few years ago after a very dry schirmer tear test, but now the neuro wants me to have a lip biopsy. He thinks I may have autonomic sjogrens. Whatever at this point!

I just want to be treated, tired of tremors, incontinence, draining sweating episodes all day long, ataxia, muscle fasiculations, twitches, jerky movements, leg weakness, fatigue, cognitive problems, I say things and people look at me like I am from Mars, my memory is going and the numbness is driving me crazy. Now my neuro wants me off of prednisone completely to see if he can get a positive lip biopsy. Ugh. I am afraid there will be too much inflammation if I go off of it. Not liking this whole process, I want to go see a naturopath and forget all of this stuff and just get well.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Scooter24]

Negative Spinal tap is not an indication that you don't have MS, mine was done to rule out other things. Many people get negative results.

[Marco]

Negative Spinal tap is not an indication that you don't have MS, mine was done to rule out other things. Many people get negative results.

Scooter is absolutely correct. They take blood and CSF within the same 24-hour period and compare the two. If your CSF has a greater content they consider it positive. Both CSF and blood values will vary in time so the test is often limited in accuracy.
Here is a blip on diagnosis MS with the LP procedure: http://www.webmd.com/multiple-sclero...l-tap?page=1#1
and here are some of the counters looked at in a routine LP. http://www.aafp.org/afp/2003/0915/p1103.html.

I understand the diagnostic process is very difficult, but would you rather have tests that suggest you might not have MS, or test results that conclude beyond any shadow of doubt that you are suffering from a chronic, progressive, often debilitating disease? Either way, I and many others are praying for you and wishing you only the best. I have high hopes for you and wish you well ....

[Pipes123]

I would go back, either to neurologist or primary care doc and say what you wrote here, 'I just want to be treated'.

Your incontinence deserves a referral to a Urologist. Stimulants work for some people with cognitive issues. I would also ask whether there is anything to treat tremor. There isn't good treatment for every symptom, but there is for a lot of them and you don't need an ms diagnosis to get treated for symptoms.

[Mrsparsons]

You sound a lot like me

I don't have any systemic autoimmune disorders, but was initially thought to have an autoimmune disease. All of my bloodwork has come back clean though. I also failed the Schirmer eye test (5 mm) and had a minor salivary gland biopsy that was negative for Sjogren's. I even had a stomach biopsy to rule-out celiac disease. Problem is that my brain lesions, which are consistent with demyelination, are diffuse and very extensive and only in my brain. The appearance is more characteristic of a metabolic disease, but about everything except MS has been ruled out at this point. My spine remains clear. My first LP was high in IgG but negative for bands. That was in 2011. Now in 2014 I had high IgG and positive bands. The bands still can be abnormal in other disease, and 10% of people who have MS don't have O-bands either.