cocoa11 said...
Thanks Rhonda
My neuro ordered the LP. I didn't go willingly!
I have read too the same 90-95% have bands and I do not.
Well I'm relieved but that doesn't fix my ongoing medical problems
I'm just not sure what to ask my GP as she relies on the Specialists recommendations.
I will find out in about a week or two when I go to see her.
I feel like I've been thrown into the "too hard" basket. The report on my MRI says and I quote
"There are a number of abnormalities. Firstly there is a distribution of scattered T 2 hyperintensities, which is not typical of the patient's age and not in a distribution that suggests a vascular aetiology. The T2 hyperintensitiies are of heterogenous sizes and shapes, scatterd throughout both hemispheres, and with a predilection for areas of the deep white matter adjacent to the corpus callosum and the body of the corpus callosum itself. No posterior fossa or brain stem lesions are seen and the rest of the spinal cord has not been imaged. Appearances suggest demyelination but the cause, either autoimmune or vascular is not straightforward to distinguish on this limited information."
I wish I knew what was going on with me.
Here are some random thoughts:
Most often...but not always...the o-bands will appear in spinal fluid, indicating MS.
Not all medical conditions ARE fixable. There may not be much that CAN be done except to treat symptoms like spasticity, if it becomes so severe or troublesome that it needs treating. But doctors don't like to treat symptoms without knowing the cause, because sometimes the treatments can cover up developing conditions, taking longer for them to become evident or sufficient enough for diagnosis. So they want to watch and wait and see if things develop, before treating one thing when it might be something else.
The line, "No posterior rossa or brain stem lesions are seen and the rest of the spinal cord has not been imaged" suggests to me that you might ask for an MRI of the spine -- sometimes (but not always) lesions show up there that don't show up in other areas.
The line, "There are a number of abnormalities" suggests that...well, "there are a number of abnormalities". Lesions can be caused by all sorts of things -- not just neurological conditions. Maybe you need to be seeing a different specialist, like a rheumatologist, or -- I can't remember the name of the specialty, but someone involved with vascular and circulatory problems. Your general practioner would know, if you ask about this.
Not knowing what is going on is extremely frustrating, to be sure. But it would also be not a good thing to insist on treatment for one disorder, or have a doctor decide that it's "X Disease" only to find out that instead it is "Y Disease" and the treatments for "X" have either been wasted, or have seriously compromised the treatments for "Y" -- which is why doctors are often very cautious about treating anything until they are certain they know what they've got. And there's plenty of uncertainty in your MRI results, for them to not want to call it anything just yet!