Unclear diagnosis. (lesion) Advice

[fugue79]

Hello everyone.  I had been waiting on MRI results after two months of numbness, vertigo, headaches and weakness, and many other neurological symptoms.  I got the report on Brain and Thoracic, with Cervical to come. I'm so confused by the findings.  They used a 3T scanner with and without contrast.  My report says this:  


A lesion is present within the left cerebellar hemisphere. It consists of punctate focus of decreased signal intensity on T2 and T2/Flair, which is isointense on T1.  A rim of T1 hypointensity and T2 hyperintensity is present as well. The lesion is 9.9 mm . calcification should be considered. No other abnormalities found in brain.

So here's the problem.  My neurologist, who is very well respected, called me to say I may have a parasitic infection (tapeworm)  and said not to worry.  Okay, very well.  Who wouldn't worry?  So I went to my primary who sent me for blood and stool sample testing for cysticercosis. Results are negative, so I have no parasite.  Meanwhile, I'm dizzy and numb every time the temperature rises, and my eyes hurt and there's a blurriness. My sinus and eye orbits are clear on the MRI.  Also, on the findings, they report that it "additional possibilities" outside of parasitic and astrocytoma are less likely.  

Since my ordering physician is a far more patient man than I, he takes a bit of time to get back to me.  I'm no longer in panic mode after pretty well ruling out the parasite problem, but I wonder this:

Does any of this finding point away from a sclerosis? Does any of it point toward it?  Is the cerebellum lesion atypical of multiple or monosclerosis?  I have no answers from my doctors after two months of testing.

I'm in a complete fog and tired of waiting long spans of time between phone calls and test results.

If anyone has helpful feedback, I'd sure appreciate it.  You all know that waiting is so difficult.
Thank you!

[fugue79]

Thanks again, ess! I'll try to find other doctors to assess it as well. I just have one more MRI to see the c-spine with contrast. Yesterday's results were without. Knowing a little more each week!

N

[fugue79]

Thanks everyone. Having communication with others who've gone/are going through this really takes the edge off that isolated feeling.  Today my primary is working on new connections for me, her trusted colleagues. Luckily, I trust her completely.

The journal been a great help. I was able to figure out that heat makes everything worse, and proven again last night while baking desserts. Usually I wake up feeling okay for a little while, then it all begins.

And yes, they called the 9.9 mm lesion 'punctate.'  

Does anyone know of any face to face support groups in the NJ/NYC area?  I'm in Montclair NJ.  It would also be great to hear some of the ways you got around fear/waiting, etc...meanwhile, the snow is a nice distraction.

p.s.  just received Cspine results.  no lesions, just mild disc herniation.

[SarahL2491]

they have to give you a copy.  they may charge you but they have to give it to you.  its in HIPPA

[kwarendorf]

Hi Fugue - Welcome to the fun-fest that is "Find The Diagnosis" :-)

As Ess mentioned there are a lot of well respected Neuros here in the NYC area. (I'm typing from my office in Jersey City.) The first "well respected" MS specialist was recommended by both my initial regular neuro and by a friend who is the head of a major dept at a major NYC hospital. The MS doc was a nightmare! I could not run from this well respected MS doc fast enough. I have since found the most amazing MS practice.

Don't be afraid to stick up for yourself. If your current neuro won't answer questions find someone who will. You also mentioned test results. Start compiling copies of all your test results; blood work, MRI (both images on CD and radiologist reports) any time they test something get a copy of the results/report. You may have to push. I was having a hard time getting LP results from nightmare doc. Repeated claims that he would fax them to me went unfulfilled. I had to go to his office and demand the results. This is your body, they are your results and you are entitled to copies!

Keep a journal of symptoms. Are they predictable? Will certain temperatures bring them on? What time of day did they manifest? Have they happened before? Bring a copy of the journal and all test results for each doctor you see. They may not look at it but have it available anyway.

Above all keep pushing! You will be able to find doctors in the tri-state are who will help you :-) (Although maybe not today as we're having a blizzard.)

Kyle

[essdipity]

We were posting at the same time. Good for you for getting more determined.

Advice still stands.

ess

[essdipity]

Hi again. In your shoes, I'd wait for the results of the cervical MRI before doing anything. If you have the others, that shouldn't be long.

I'm not clear on the brain MRI report. Is the lesion they call 'punctate' the same one described as being more than 9 mm in size? That definitely is not punctate, which means tiny or pinpoint-sized. A rim is significant of something, but my layperson's mind can't recall what. Hypointensity tends to indicate an old lesion leaving a sort of hole. I hope those with more knowledge will chime in here.

If you live in the NYC area, there are loads of competent neuros nearby. We've heard good things about NYU's MS doctors and clinic. I know it's very frustrating not to have answers after months of symptoms and months of tests, but I'm afraid that's par for the course. Many of us, me included, went quite a few years and multiple neuros before getting a diagnosis, and it ain't fun, I know.

Please consider seeing another doctor, with all your reports and test results in tow. That brain lesion means something, but I personally don't know what. Glad it's not a parasite--never heard of that possibility before.

ess

[fugue79]

Thank you. This is very helpful!  You're right about making some noise. I will be doing this today.  I was particularly surprised that the imaging center refused to give me MRI copies each day I went in to collect them!  This was at least a week after testing.  I think a ct scan is in the near future, since the report seems altogether uncertain.

Today I will know more after another result comes in, and hopefully it will clarify the chaos.  

Thanks again, and I'll update.

[twopack]

Off the top of my head (even though I likely have none to spare) I'd say it's time for a second opinion.  Any doctor who cares so little about you or so much of himself that he believes his simple statement to "not worry about that" should satisfy your justified concerns beyond a day or two.... needs to be reminded that it just ain't so!
  
If you want to stick with him then it may be time to become a squeakier wheel.  Make some "I NEED to know, NOW" type noise.  One the other hand, there is always another respected expert to be found - not to mention the relative unknown neuros out there who are excellent detectives.  You can request a copy of your MRI on CD from the imaging facility and take it with you for a second opinion.

I don't know very much that helps with your specific questions.  I do know however that there are many reasons for calcifications to appear and some have to do with inflammation.  I'm just not sure MS would be one of those.  I do wonder if there has been any mention of doing a CT scan.  CT scans and MR imaging do their best work when looking at specific (and different) types of tissue/structures.  Could it be a CT would further detail or reveal specifics about this calcification?  Just a thought.

Welcome to the MS community.  You have entered a zone full of people who understand all to well what it is like to suffer through seemingly endless waiting periods.  Hang in there a little longer but start making a concrete plan.  Then......

Make sure you let us know what's happening and how you're doing!