Why?

[steph74]

Why is it multiple doctors can all look at you and say, "I can't imagine anything else that would cause your sx other than MS" but still not give you a dx or not try to figure out what this "new" disease is that looks just like MS but doesn't show up with lesions on the MRI???

I know this is a common rant, but MAN, it is SO frustrating!  I saw the neurosurgeon yesterday about the trigeminal neuralgia and he said it would be "exceedingly rare" for someone my age to have bilateral trigeminal neuralgia caused by anything other than MS.  He agreed with my MS specialist that it looks and sounds like MS. But my MRIs have remain mysteriously clear.  My last brain MRI was not a great one (1.5T with 10 mm slices, so they could have missed small lesions, was ordered by a NP when I went in with the complaint of a terrible headache for 12 days).  My neuro will order a new one next year on a 3T with MS protocol (and apparently "CISS" protocol to visualize the blood vessels, just in case).

While I understand the hesitancy in doctors to make a dx without absolute proof, if they don't think it's MS, or there's some possibility it's not MS, why not try to find out what's going on (is it something that has never been named before?)  Why do they just throw their hands in the air and say "wait and see"?  For what?  to see if I get even more sick and still don't have lesions?  If in 15 years lesions start appearing, then what?  I'll have MS then, but not now?

I usually have a pretty calm and accepting mood about all this.  I'm just feeling a little frustrated with it today.  But seriously, WHY?

Stephanie

[PastorDan]

Can't answer your question, but I think it would be worthwhile for all of us to copy this whole thread and share it with a half dozen neuros and their office staff.

[steph74]

Thanks everyone.  I was gone for a few days, so sorry for the slow response.

Yes, I've had the blood work to R/O the many mimics.  I do have celiac disease (talk about hypo gamma chondria--I was severely anemic for 6 years before I found a doctor willing to look into causes other than "heavy periods" [that I DON'T have!!] or pregnancy, he found it with a few quick blood tests (values off the charts) and confirmed with a biopsy).  I've been on  gluten free diet for almost 18 months now, though, so it's unlikely to be a cause of my most recent bout of sx.

I've had MRIs of my brain, c-spine, thoracic and lumbar spine over the past 7 years.  I've had an LP (7 years ago, with a lovely 5 day spinal headache).  All were normal.  Maybe the 3T with thinner slices that the dr. will order next time around will show something, but I'm not holding my breath.

I have obvious signs on my neuro exam (MS specialist said signs on the cerebellum, pons, and c-spine).  I'm 35, was 34 when the TN started, so definitely not in the "over 50" range everyone talks about for TN.

[Nancy T]

Hi Steph, I agree totally. I was told it's not MS (even though, on the other hand, they said it "remains in the differential" and another one said "it COULD be MS"), yet they gave me NO other possible explanations except anxiety or "medical student's disease," which it clearly isn't--and they had no interest in investigating further.

I too have bilateral trigeminal-nerve symptoms (not sure I would call mine "neuralgia" except for the first episodes, but lots of stabs, jabs, painless electric shocks, and paresthesias in the area of the trigeminal nerve).

How old are you that they say it would be "exceedingly rare" for the TN to be something else? I was 42 when mine started. Also, have you had a spinal tap or evoked potentials? (I did not have a spinal tap, and only auditory EPs.)

One thing I noticed when reading my journal from 8 years ago was that my neuro said that he had seen thousands and thousands of patients, and after hearing so many symptoms from these thousands of patients, you know you’re not going to find out what’s wrong. In other words, he was telling me, lots of people have symptoms and the docs know they aren't going to figure it out. Real encouraging, eh? I just wonder, though, whether what they really want is just for the patient to leave them alone. Surely many of these patients DO find at least a partial explanation for their symptoms in later years, from other doctors, but of course HE wouldn't know that.

Another thing I noticed this morning is that in my post on Quix's "Hypo Gamma Chondria" thread, I put the wrong date for my journal entry... it was Dec. 4, not Sept. 4. I definitely have holes in my brain! :)

Aargh. Bottom line, many of us here share your frustration (as you know).

Nancy

[Amyloo]

Hi,  I am sorry for your frustration, I know how hard this whole process is.  Have you had MRIs of your C and T spine?  I seem to recall someone on the board that had no brain lesions but a couple on the T spine.  Also, have all proper tests been run to rule out mimics?  Maybe a silly question, but thought I'd throw it out there.  God bless you, Amy

[uk2]

Me too just be discharged from my neuro after my dr sent me to see him again second brain MRI still no lesion been ill since 2007 so frustrated they tell me as there no lesions no MS buit maybe fibromyalgia (though can i find a dr that believes this condition even exsists) only one and i' under him but only see him once a yr and his not even sure that is what i have lol as my pain increases and decrease weakness get worse a huge numb permanant patch grows over my left hip/buttock i wonder why i get the dude neuro!! i have another referal to another hospital and i so pray this will show answers.

Have you thought about fibro you get TN with that too.

[ncowleyc]

I'm right there with you girl. Also had bilateral TN (not at same time) plus what Neuro-Optho said was inflammation of the right eye. Lost some periphial vision with that one. If that isn't signs of MS or a neurilogical disease I don't know what is. Ran out of money but have at least 2 docs say need further workup for MS. You keep pestering the doc for a 3t MRI. You need answers today not a year from today. Take it to another doc if you have to. Good luck.