Reply to Jeanne’s Comment

This was going to be merely in reply to Jeanne’s comment on my post titled, Sleep. But, since I wasn’t sure if I had hashed out how I had gotten here in neuro land on this blog before, I would just post it for everyone.

Here goes:

Thanks, Jeanne. My Neuro is actually great in the regards that he’s really trying to find something that will work. And he calls – he – after tests to give me results. And most of the time he will call me when there’s a med adjustment, too. When I was in the ED 3 years ago, they had 4 neuro’s and 2 neuro interns examining me and a team resembling the team from House. I was literally crying because I told my husband “If they have the House team here, I’ll be near death before they figure out what’s wrong.” Their ruling was either MS or severe spinal stenosis but they couldn’t keep me because the scan of my bladder ruled out stenosis. Then when they tried to do an MRI to see if it was MS I went ape even though I said I wasn’t claustrophobic! I’d had MRI’s before with no problem! But this time I went into a full blown panic attack even with valium, and they said they wouldn’t do and had to send me out for an open MRI. So they consulted they chief Neuro, my neuro, and he said for me to come to him Monday (this was Friday night when I was at ED) and he did an open MRI to “confirm MS.” Problem was my brain MRI was clean. Then they did EMG studies and tons of other tests to look for MS, because he was certain that’s what it was, but it only showed mild strength loss not much – and mainly in my arms and hands. He said he had a hunch but wanted to rule out rheumatology so sent me there. They did a bunch of blood and said no RH or lime, it was neurological. Got sent back to neuro. At this point I was walking funny because my leg was wobbly and I had strange head pressure. Then they did a series of cat scans – one when my head didn’t feel wobbly and one when it did. And he determined that I indeed was having complicated basilar artery migraines. He told me it was rare and a complication from carrying and traumatically delivering my daughter – delivering her literally shocked my system (i.e. resulting in claustrophobia, diabetes insipidus and autoimmune thyroid disease because of a destroyed posterior pituitary gland).

 

We then tried two different meds that didn’t work and then in December of ’05 my neuro gave me Topamax. And Topamax and I then had a 16 month love affair that resulted in hardly any migraines. Strangely enough, even though I didn’t have migraines I still had episodes of transient numbness or weakness that never lasted long. We just attributed it to the migraines. Now recently, I come in with my trigeminal neuralgia and he says it’s from an ear infection that’s not cleared up. OK – I’m going along with this only because I did have a sinus and ear infection that raged out of control because of my main doctor’s incompetence. The reason we are having med problems right now is because of A) the trigeminal neuralgia and B) my sodium problem with the neuro meds and the DDVAP. I have to take the DDVAP, but because it messes with sodium – and I was on two other meds that messed with sodium (Topamax and Tegretol), my sodium fell dangerously low. So they took me off the Tegretol and put me on the Baclofen when the Tegretol was no longer helping me instead of increasing so I could actually, possible, increase my DDVAP to twice a day again soon (let’s cross fingers people!). My neuro is really trying to work with my endocrinologist who is the dragging his feet. This guy is never in his office, takes a week at least to call me back, never call me back personally, and I haven’t actually seen him since this summer! I’m not complaining, though, I don’t want to go see him.

Overall, besides transient numbness, I now have trigeminal neuralgia, the right side of my face now feels permanently tight (imagine a facial mask left to harden and then not washed off ALL DAY), vertigo (not all the time – comes in episodes), tinnitus (episodic), and now the fun smelling smoke. BTW – I finished my second round of antibiotics for sinus infection yesterday. I haven’t felt sinus pressure weeks. So why the smoke smell? I’ve noticed it is worse in stressful situations.

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2 responses to “Reply to Jeanne’s Comment

  1. You told your MD about the smoke smell, right?

    Wow, it sounds like you have been through a lot!!! 😦 I hope they can find a good regimen for you. Sometimes it takes too long! I have a friend that has diabetes along with some other issues, and, she has the hardest time getting the right combo of medications.

    I hope you can find a better rhem…that guy sounds worthless!!!

  2. Endochick,

    I’m glad you like your neurologist! At least he hasn’t given up on you (I’ve had two do that with me). That’s amazing that he actually calls you with results… rare nowadays!! I’ve been “on display” in front of a team of doctors several times… so I know EXACTLY what you’re talking about.

    In fact, I recently had something posted on my sidebar about that show “House” as kind of an inside joke after you had sent me a twitter reference to the show. (My blog was getting too cluttered so I took it down). When that show came out and I first watched it, my husband and I just looked at the screen like, “hey THAT looks familiar… a bunch of doctors totally baffled/puzzled by a patient”!

    I too have been checked for MS over the years. It’s very frustrating when multiple doctors can’t figure out what’s wrong, when you keep hearing how “rare” your symptoms are, and when doctors say, “Hmm… I’ve never had a patient have this happen before” [insert doc’s blank stare here]. I’ve had plenty of docs make me feel like a freak of nature!

    I’ve had panic attacks too (not from an MRI) so I know how scary that can be. I have also been to a rheumatologist (in my case to confirm my other doctor’s fibromyalgia diagnosis). The rheum freely admitted he couldn’t help me (long story).

    Like you, I’ve had my system “shocked” in a similar way… leading to many more diagnoses since.

    I had 18 sinus infections in less than 2 years. Knock on wood it’s been a good 5 months or so without any more of those… thank goodness. (Hooray… That means I can use my CPAP machine for my sleep apnea so I don’t stop breathing in my sleep. You gotta love it when your nose is too runny to use the CPAP at night to keep you breathing).

    The ENT had stuck a “telescope” up my nose and down my throat (yay!) and had done a CT scan of my sinuses: “verdict normal” somewhere in the middle of all of those infections to try to figure out what was going on. My PCP thinks the sinus trouble was allergy-induced and I think she’s right.

    I hope they can properly manage your trigeminal neuralgia and sodium problems. Do they check your electrolytes regularly? I’ve had some “sodium issues” too… not good.

    I just saw my endocrinologist today and now I have to get another ultrasound on my thyroid (she found a new nodule, different than the one I previously had a fine needle biopsy on… oh, lovely)…

    I really appreciate when the docs work as a team… like they should!! Is there another endocrinologist in your area who’d be a better “team player”? I know some cities have a shortage of endocrinologists. I know you don’t want to see the endocrinologist but if his “hands off” approach means some clue is getting missed for getting to the bottom of your problems, it might be worth searching for a new one!

    Like you, I have lots of different stuff going on at once which makes it really hard to pinpoint what’s what!

    That smelling smoke might be a big clue if you can find the right kind of doc to figure it out. It seems like that is an odd enough symptom that someone should be able to get a clue from it.

    OK… my next few sentences I will precede with a disclaimer: this is obviously NOT medical advice. Here goes… it took me quite awhile to realize that most sinus infections are viral rather than bacterial. So antibiotics can do more harm than good. I have found taking probiotics (i.e. lactobacillus, bifidus, etc.) is very helpful for sinus problems. Probiotics replace healthy bacteria that is/should be normally found in the sinuses and in the intestines. Antibiotics don’t just kill the bad bacteria… they also kill the good bacteria. The more rounds of antibiotics I did, the more sinus problems I had. Saline nasal sprays can be helpful too.

    Hmm… I don’t know what to tell you about the smoke smell. Is it like a cigarette smoke smell or a fire-smoke smell? That’s interesting that it’s worse during stressful times. Are you comfortable with the primary care doc you have now or is that the doc you aren’t wild about? I don’t know if an ear, nose, and throat doctor might be able to help figure out the smoke thing or what?

    I know what it’s like to have numerous “odd” symptoms that totally stump doctors. It’s incredibly frustrating! If you aren’t happy with your primary doctor and you’re having so many problems, you might want to start “doctor shopping”. Since the PCP is supposed to be the “gatekeeper” who keeps things flowing with all of the specialists and since your situation is complicated… you really might want to look elsewhere if you’re still with the PCP you don’t care for.

    I know it’s a royal pain switching docs (especially a PCP where referrals are involved for insurance). However, if you aren’t thrilled with your PCP, you might want to find someone better able to meet your unique needs. I am very happy with my PCP now and it makes all the difference. She helps me “stay organized” and works with my specialists which is very helpful.

    Like you, I have numerous major illnesses going on… not just endometriosis by a longshot. So just know that you are not alone.

    I know how frustrating the zillions of doctors appointments can be. I think I’m up to 8 or 9 specialists now. It’s totally out of control. Unfortunately, when you have something wrong with a bunch of different systems of the body or when your specialists start referring you to subspecialists… things can get really interesting.

    Hang in there and try to get some downtime whenever possible. If you’re like me, your worst enemy in the midst of all of this is STRESS. So if you can meditate, do some deep breathing exercises, or even have a darn cup of tea and just chill out… whatever time you can squeeze in to take care of yourself. Your body will thank you. I have learned the consequences of not taking the time to care for myself. If I had listened to my body earlier, I think I’d still be quite sick but I really DON’T think I’d be as sick as I am now!

    Take care!

    Jeanne

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