5 lesions, spinal tap

[BMax7]

Hi everyone. I am new here. And, very worried. I had a brain MRI which showed five lesions. I had a spinal tap with follow-on blood patch before XMas. I've had two cervical fusions in two years. The last 12 months have had numbness, weakness, tingling and pain in the right calf and right arm/hand, and vision isssues only on my right side. Today, my DR called to say they lost the results of the spinal fluid and blood and I have have to repeat the spinal. I won't do it. The spinal headache after was excrutiating. The blood patch didn't work and I was in bed for five days. I was vomiting and passing out from the pain. My PCP says she believes it is MS. The neorologist isn't sure w/o the spinal results. The NeuroDR is a jerk. He won't explain anything to me, and I don't understand what I am looking at. I'm scared, worried and trying not panic. I will not do another spinal. I don't know where to go for answers or help. I'm grateful for any guidance.

[Redwings]

Hi BMax7:
Welcome! I'll cut to the chase...

It's an uncomfortable -- okay, ugly -- truth that so many neurologists are just arrogant jerks. It seems to be the rule rather than the exception that people with inflammatory neurological conditions have to change neurologists several times before finding one who is medically qualified and of a compatible personality. Of the six neuros I've seen in the last 15 years, three were great, but the other three were the Wicked Witches of the East and West AND the Wicked Witch of Every Longitude and Latitude. So your jerky neuro is, sadly, not a surprise.

Is your neuro an MS specialist? It doesn't sound like it because a good MS neuro doesn't necessarily need a spinal tap/lumbar puncture (LP) to make a diagnosis of MS. In the first place, 10 to 20% of people with MS have negative LPs anyway. Second, many people are diagnosed without an LP because the neuros know how to interpret other signs and symptoms well enough to make a diagnosis without it.

There are times when there just isn't enough evidence to make a diagnosis without an LP. But based on what you've told us so far, I'm not sure you're in that category yet. (I'll tell you why in a minute.) So for now, DON'T do another LP.

Yup, DO NOT do another LP. Instead, get yourself another neurologist. The National Multiple Sclerosis Society (www.nationalmssociety.org) can give you leads on neuros in your area who are MS-savvy. An MS specialist will know whether an LP is necessary or if there's enough evidence available to make a diagnosis without one.

The McDonald diagnostic criteria for MS recognize the value of a visual evoked potential (VEP) in making a diagnosis. You mentioned that you have "visual issues." You didn't specify what those are, but they might be helpful for diagnosis. If you've had a VEP and it showed a conduction delay, that counts as evidence that can be used in making a diagnosis. (A negative result, like a negative LP, isn't helpful.) If you've had an ophthalmology exam recently, some of the findings might be useful as evidence in making a diagnosis.

Until the (noninvasive and relatively painless) ophthalmological tests are done, it's too soon to say whether you need an LP. Plus, there are other evoked potentials tests that can be diagnostically helpful, ALL before an LP is needed. So until you've had all of these other tests, don't have another LP.

Another advantage of not having another LP is that, if one is needed later, it will be done by a different doctor and the procedure might not be so traumatic. Some of the "aftermath" depends on the doctor doing it, and a lot of it depends on the technique. I had one of the easiest, kindest, most peaceful, least traumatic LPs in the history of medicine, so I know they're possible.

So, in the meantime, take a deep breath, relax and put your dread of another LP to rest. If you haven't had an eye exam within the last year, make an appointment with an ophthalmologist to document what those eye and vision issues are. If appropriate, the ophth can refer you to a neuro-ophthalmologist to look for more specialized evidence of trouble that might be useful in making a diagnosis of MS.

Also, get a complete copy of your neurology records and start looking for a new neurologist. (Tedious as heck, but it goes with the territory.) In addition to checking with the NMSS, ask for recommendations here at MSWorld. Folks who live in your area might be able to steer you toward a good one.

Oh, and did I mention... you don't have to have another LP right now.

[mjan]

Hello and welcome~ Glad you found us too!

Sorry for your terrible experience. My question is, is this Neuro an MS doc? Heard recently that the % of those who get a neg still have MS. AND if dont right, is not painful..with few or no side effects. Again I am sorry.

Redwings makes a good argument not to get LP as well.
GET A NEW doc if he/she is not a MS doc anyway.

It will work out.. you have US know so you will receive lots of information and support. There is also a LIMBOLAND thread so look for it. ITs for folks who are still waiting a finaly diagnosis..any diagnosis.

HUGS my dear!

Warmly, Jan

[BMax7]

Thank you. I called my PCP today and asked for a new neurologist, one that specializes in MS, and a referral to an eye doctor. Hopefully, it won't be long. My vision issues are that my right eye is blurry. Nearly all the time. It won't focus right and it takes a long time for it to focus at all. It's lasting longer and more frequent as time goes on. This is the newest of my particular symptoms.

I am going to stick to my guns then and not have another LP. I'll check out the thread you suggested on this site, too. Thank you so much. I feel much better (and calmer) already...