you really need a spinal tap to rule out MS but what you describe the brain spots in and of themselves could be any number of things - sounds like your doctors are thinking more vascular? the spinal tap, usually, is really no big deal as long as you stay as horizonal a day. i had one in 2002 for meningitis. my hubby had one this past spring to confirm his MS diagnosis. sounds like you have serious enough symptoms that you need to get to the bottom of this, get a diagnosis so you can start treatment.
Hi, and welcome to the MS Forum. I hope we can help with some of your questions.
The main ?? is whether or not a spinal tap is needed for a diagnosis of MS. the easy answer is "no", but that doesn't tell the whole story. There is no requirement in all of the criteria for diagnosing MS that one must have an LP (Lumbar Puncture or spinal tap). However, a tap may be very useful to add evidence to the picture that MS might be responsible for a person's problems IF it is positive (for O-Bands or for an elevated IgG Index). Where many neurologists become confused in what to think if the LP is negative. If it is negative IT DOES NOT RULE OUT MS. Again, it is incorrect to rule out MS as the diagnosis if the LP is negative.
When you say you had R-sided pain, did you mean in your abdomen? Did the GI work up rule out Celiac Disease? This can be an elusive thing to find and can cause neurologic symptoms.
I also assume you had blood tests for ESR, ANA, B12, Lyme Disease, HIV, VDRL, ACE, Anti-Phospholipid and anti-cardiolipin, plus several more?
The process of diagnosing MS goes something like this:
1) The neurologist looks for a pattern of symptoms where first there is an onset of symptoms consistent with demyelination in the central nervous system. The most common demyelinating disease is, by far, MS. They look for repeated attacks, which after time improve or go away. Then, for any subsequent attack. If they have this Attack-Improvement or Relapse-Remitting pattern the suspicion for MS rises. If there is only one attack, they can be suspicious, but they will want much more evidence.
2) The next thing that is required is a completely thorough, head-to-toe neuro exam and they look for evidence of damage to the central nervous system (CNS) in two or more places. Do you have any abnormalities on your exam - like hyperactive reflexes,abnormal eye exam, altered sensation (especially from one side to the other), and such? This would include the new tremor in your thumb.
3) Usually the next thing would be an MRI of the brain and, many experts believe that an MRI of the spine should be included - the cervical spinal cord at least. If the MRI is abnormal in a way that is consistent with MS, then with the pattern of two or more attacks and two or more distinct places in the CNS, then there is actually enough information to diagnose MS --->>
4) IF all the other things known to cause neurologic problems like this are ruled out, like autoimmune diseases, Vit12 deficiency, infections, cancer, and such. MS cannot be diagnosed until a full "rule-out" has been done. Most of this is by blood work.
Now, MS also frequently causes lesions in the spinal cord. If your neurologist wants to do an LP because he needs more evidence, it would make most sense to do the spinal cord MRI next because it can supply the needed evidence to make the diagnosis sometimes and it is recommended to do this if the evidence from the history and physical and the brain MRI are not enough.
Also, since you have had visual problems, it makes sense to have you be seen by a neuro-ophthalmologist to be work up for optic neuritis. This would typically be done by first an eye exam. If the eye exam showed signs of optic neuritis such as paleness of the optic disc at the back of the eye (when they look deep inside) or by defects in your visual field, then this is another big piece of info that would point toward MS and make an LP less necessary. If the eye exam was normal, you still could have had optic neuritis, because the exam is normal in 64% of people who have had optic neuritis. Then you would want to have a VEP - Visual Evoked Potential - to look for the signs of optic neuritis in another way.
So, two tests that you didn't mention would be the spinal cord MRI and a VEP to look for more evidence of MS. If those didn't provide the evidence needed for a diagnosis, then a spinal tap (LP) would be recommended. Now, some neurologists insist on an LP for everyone, but that is not actually required.
Do you have the report of the MRI? This can be useful to have to see exactly what they said about the lesions in the white matter. Foci = spots, or lesions. Too many neurologists expect the MRI to be absolutely classic for MS, when all it has to be is consistent.
Now, I have a couple more questions.
What was your pattern of symptoms as they developed? Have any improved? Did you have any period where things seemed better?
What was your neuro exam like?
Was your ESR elevated? Have you had any joint pain or arthritis?
Well, I have gone on and on. The main point here is that MS is a little sticky to diagnose. The docs have to look at a lot of things and their patterns. And, there may be a couple more non-invasive things to do before an LP is necessary. However, I would advise you to have the LP if the doc really needs the evidence.
I hope this helps. I am one of the forum's co-leaders and before being disabled by MS I practiced medicine for 23 years. Others will be by soon to add their hello's and advice and support.
Greeting and welcome to our community here.
Whoever suggested that you need that lp is off base .... A spinal tap (lumbar puncture) will neither confirm or eliminate MS as a diagnosis. It is only used as a piece of evidence to support a dx of MS.
I have nothing against you having an LP - mine was uneventful, and most of them are (1 in 7 have post-lp headaches) but please understand what this test will and will not prove.
So for 14 months I have had RIGHT sided upper arm pain with numbness and RIGHT SIDED CALF pain with numbness. Occasional tingling feeling in right cheek. I have had two NORMAL BRAIN MRI's and two normal EMG's. Also, bold tests for HIV and Diabetes. Also, blood test for thyroid and Lupus and other auto immune disease. ALL NORMAL. HOWEVER they did discover simple partial seizures on my left Temporal lobe. BUT they can't say that's what is causing my right sized pain. I suffer everyday, always worse at night , I feel depressed and sick of not knowing what is causing this. Any help or advise would be so very much appreciated thank you. Mindy going nuts in Hawaii
Sounds frustrating. I do not know what to say it looks like you have had all the tests.May be someone else has a similar experience.