my neurologist: exact opposite of my ex-rheumatologist

I heart my neuro. He’s a really good doctor who takes his patients seriously and truly wants to help them. Let’s see if I can remember the appointment:

I told him my new symptoms. He wasn’t really concerned about the hoo-hah tingle, because he said that can be seizures. His sense of humor is functioning, because when I said, “and it’s not the good kind of tingle,” he laughed. So did Lisa. I reuse my jokes on each person.

Also, the electrical shocks in my legs can be seizures. Same for the electrical shocks in my fingers. I forgot to tell him that my vision floaters are getting worse.

TMI below the fold.

Bladder control / bowel control issues were the only symptoms that concerned him, because these aren’t going to be explained by an abnormal EEG. Finally, I asked him if he thinks it could be MS. He said that is a possibility, but we can rule that out with cervical and lumbar MRIs. BTW, I think it’s a cruel trick that they made the cervical region of the spine at the complete opposite end of your spine from where your cervix is on your body. The two words sound the same, you’d think that maybe the cervical region would be near the cervix, like the lower back. Swap it with the lumbar. But they just wanted to confuse people. I’m sure there’s an explanation.

Ok, so we talked about MS and how I do have a lot of the MS symptoms. I also mentioned that I have a lot of symptoms of celiac disease (we went off on a tangent about this, or I would also have mentioned Lupus, fibro, and lead poisoning). The doc told me that I can diagnose myself with celiac disease by getting off gluten for about 3 months, see how I feel, then reintroduce it into my diet and see how I feel. I told him that would be fine except I don’t want to waste 3 months if it’s not celiac and get 3 months down the road just to figure out that that is not my problem… all I’ve done is waste 3 months. I’d rather get the blood test and, if necessary, the intestine biopsy. The doc did know a lot about celiac disease, though (we talked about it for a while), so that made me happy.

Anyway, I told Dr. M, my wonderful neuro, that I’m just so frustrated that I’m ready to get in the car and drive up to Jacksonville and spend the week at Mayo so I can get a diagnosis.

Then I told him about my stomach symptoms and the loose stools for 2.5 years. He asked if my primary doc knows about this. I said yes, and he asked if my primary had referred me to a gastroenterologist or sent me for endoscopies. I said no. He asked why, and I said, “Because doctors don’t take me seriously,” and then came the waterworks.

Egads, I can’t control them! So then I had to tell him about my bad experience last week (I didn’t go into major detail, just the part about running out crying), and he asked, “Did you hide how you felt, or did you tell the doctor?”

Oh yeah. He knew, because I said, “I can’t see you anymore, because you’re not taking me seriously.” And Dr. M said it’s good that I told him how I felt.

Dr. M was really good with me while I cried too. First he ran for the tissues, bless his heart. Then he patted my left hand while I covered my face with my right hand. Because I’m ugly when I cry, and I knew that Bikermommy would have wanted me to cover my hideousness. ;-D

I told him that I’m just really tired of being sick, and it seems like I just get more symptoms all the time, and I just want to know what’s wrong so I can get better. I told him it’s just frustrating when doctors don’t seem to want to help, and they tell you you’re perfectly normal, nothing is wrong with you, here’s some pain pills, go on your merry way.

I told Dr. M that I know he’s a good doctor. He told me that he knows I’m sick, and he knows that what I’m going through is very real. And he wants to help so I can get better. I kept apologizing for crying.

Anyway, he said we could do an MRI on the spinal cord to rule out MS. And I asked if I’m negative for MS, would he refer me to Mayo so I can get in faster? And he said, uh, yeah, um, we could do that… and he changed the subject. Ha.

So we talked more. Migraine meds, seizure meds. I told him about the chiro and the laser therapy and that it’s helping the migraines and the carpal tunnel, and he said that’s good, and he didn’t flip out! ;-)

We talked about my nerve pain. Still persistent and was persistent the whole time I was off Topamax. We talked about the seizures and my meds for that. Since we know that the nerve pain was not caused by the Topamax, we’re going to try once again to use the Topamax to control the seizures (the seizures have been out of control lately – yesterday they were insane). So my dosage will creep up over the next month to the seizures dose, and he promised that if my nerve pain gets worse when I get to the higher dose, he won’t take away the Topamax completely, he’ll just drop me back down to the migraine dose. :-) Yay! I love this doctor, he really wants to help.

So then I told him that my entire body hurts. Hands, feet, legs. The only parts that don’t hurt are my arms, but I got so fat that I got carpal tunnel, so only part of my arms don’t hurt! (LOL, I’m falling apart.) (BTW, the only reason I still keep my skinny pictures on the front page is to remind me what I’m going to look like when I lose all this weight. Because I am going to.) After I told him that, he decided he wants to do nerve conduction studies or something like that to see if I have nerve problems that are causing my muscle problems.

We got everything figured out on my meds for the migraines and seizures, decided on the nerve studies. He said let’s do the lumbar & cervical MRIs to rule out MS. If there are no plaques on the spine, then no MS, and there’s something else going on (notice he didn’t say that if it’s not MS, there’s nothing wrong!).

So I said, “And if it’s not MS, you’ll refer me to Mayo so I can get in quicker?” and I was nodding my head very exaggeratedly.

Finally he sighed, grinned and gave in. He nodded and said yes. He will refer me if it’s not MS. He pretended to write something and said, “Patient is training me…” or something like that. I couldn’t really be sure. He’s Colombian, and I have to ask him to repeat himself sometimes because his accent can be thick now and then. Not too often, but now and then.

My poor doctor.

Oh. Then he told me that he can see I’m very anxious, and he pointed out the fact that my hands and arms were shaking. I looked at them. Nice, SarahK. Nice. Almost convulsing, that’s how shaky they were. He said he knows everything must be very overwhelming for me… and he can prescribe something for me to calm me down if I’d like… something low dose, non-addictive. Thank you, but no. I had that bad experience with Zoloft, so I can’t… So he told me I need to be doing relaxation techniques. I named off all the ones I do, and he stressed the importance of making sure I follow through on those. Apparently, my neuro can tell I’m really high-strung right now. (Just right now, ok, y’all?) And he was concerned.

He’s a good doctor.

BTW, the MRI is tomorrow morning. All the way in this time. I’ve never gone all the way in the tube. I’ll be fine. They give me headphones and let me pick my music, and I know I can take my own CDs. I think I’ll take Enya’s Amarantine.

10 Responses to my neurologist: exact opposite of my ex-rheumatologist

  1. Good luck! :)

  2. We had my son tested for Celiac. I have a cousin whose daughter has it and we were ruling stuff out. SIMPLE blood test. I’d do it in a heart beat just to rule that out… And CD is horribly under diagnosed.

  3. Don’t be afraid to ask for a sedative before the MRI. Wear no metal (that means no underwire)! If you just wear comfy sweats you can usually skip changing into the open butt gown. Good luck!!!

  4. Good luck! Sounds like this doc is a keeper.

  5. Sarah,

    The bloodtest for celiac is the first step. There are three antibodies they look for (I only tested positive for the least specific one). But it’s a realitvely painless way to start, and take less time then three months of no gluten.

    I had weird nerve problems while sick from the gluten in celiac. I didn’t have the GI symptoms for the first couple of years – it was all neuro (go figure). So I had a lumbar puncture done (no anesthesia) before the celiac tests! But I’m thankful I had such a great neuro doc.

    Even if you do test for MS, getting rid of the gluten seems to help in other autoimmune disorders.

  6. Actually, if you go off of gluten as a way of determining if you have celiac, even if you re-introduce before doing bloodwork, biopsy, etc., that can throw off the results. If celiac seems to be a possibility, you should just go ahead and go the bloodwork/biopsy route – and know that there is a high incidence of false results with the bloodwork. The only way to be 100% certain is the biopsy – considered the “gold standard” for celiac diagnosis.

  7. Ohh, I love him!! Good luck!

  8. Actually, cervix is Latin for neck.

    So cervical spine = part of spine in your neck and
    cervix = “neck” of the uterus.

    What a Latin weenie I am …

  9. Huh, the couple of times I’ve had to have an MRI I didn’t get any music, but I kept giving them trouble because I’d keep falling asleep and then relax (move). But I was motionless in the dark so it was hard not to go to sleep.

  10. I am just really sorry this is happening to you. You’re on my prayer list. The Mayo in Jacksonville is wonderful.