I'm coming up on my third anniversary of being in limboland, and although I still don't think I have MS (and neither do any of my doctors, although y'all know how impossible it is to rule out entirely), my neurological symptoms seem to keep growing, the latest being this weird sensation of vibrations under my left foot (in addition to the tingling and prickling I've had for ages). I also have this weird thing going on for six months or so that the left side of my face feels like I got novocaine and it's half worn off. So not totally numb, but loss of sensation and a "rubbery" kind of feeling.
Anyway, I need a good neurologist, although not an MS specialist. I was hoping that someone here who's been through the rounds of doctors in Portland, OR, might have some suggestions for me? I'm not sure if it's OK to name names here, so feel free to PM me.
While I was having vertigo and all the doctors were not looking for anything but psychopathology, I had a few visits in the hospital with a Dr. Kimberly Goslin with the Oregon Clinic, Neurology Department. She was wonderful and compassionate and very smart. She is in a practice with some real arses, but I would go to her if I didn't have an MS doc I liked and respected.
If you have already seen a neurologist in the past, I wouldn't count on enlightenment from any new ones.
I've met a couple of smart and nice neurologists here, but I doubt you will get anywhere with any neurologist--that is, if you've already had an MRI and neuro exam with nothing really striking discovered. So, sorry, can't give you a recommendation--although Dr. Leslie McAllister at least won't treat you like a head case if you ask her not to! :) She was nice.
If you have actual motor symptoms, actual muscle weakness, actual bad reflexes, stuff like that, you might get taken seriously. But not with the sensory symptoms you mention.
I'm certainly not trying to dismiss your symptoms--just saying that no one was impressed with my sensory symptoms, not even Lhermitte's and trigeminal neuralgia, nor my report of arm-coordination problems one summer. It's all.... "benign paresthesias," or "something," or "nothing."
Nancy: I have had the MRI, and while my neuro exam isn't entirely normal, it's not in-your-face abnormal in a way that can't be explained away by a doc that wants to explain it all away. I have definite weakness on my left side: leg, arm, cheek. But a 15-year-old shoulder injury that left permanent damage may be responsible for the arm weakness. I have some low back issues that may be causing the leg weakness. And the same car accident that caused the back problems also caused some neck issues, which could possibly be causing my facial symptoms. Sigh.
I had an LP last June that was normal. Before I had it, my neuro said that if it was normal, there were some other tests she wanted to run looking for a variety of other things. There was a weird scheduling problem, apparently, and she was a no show at my LP. After I waited for her for three or four hours, they finally called another guy to do the LP for me. I got the LP results on the phone (and hardcopy mailed to me) but was told to schedule a follow up appointment, When I went, during one of those record-breaking hot days last July, she never said anything about the no-show LP and just told me the LP was normal and that she was sending me back to my other docs. My internist thinks she was embarrassed about being a no show and just felt awkward or something and wanted to get rid of me. The heat had me so enervated that day that I didn't have the wits to ask about the other tests (nerve conduction and some other things) she had mentioned before the LP. And really? I don't want to go back to her again, even though my symptoms have worsened. Thanks for the suggestion of Dr. McAllister. I'll see if she's covered by my insurance!
Quix: My internist had good things to say about Dr. Goslin and said that was who she'd like to send me to. Unfortunately, my old neuro is at the Oregon Clinic too, and my internist says it's unlikely she'll take me on since I've already seen one of her colleagues. :-( I'm going to have to PM you to see if the one I saw was one of the ones you think are arses. :-) Thank you!!
I forgot to mention, Nancy, that I suspect you're probably right. My facial numbness spurred my internist to order another brain MRI & MRA, and nothing had changed except they thought there was a possible tiny aneurysm. Got sent to the neurosurgeon, who ordered a CT angio and decided it was no big deal and not an aneurysm. Which is good! But left me with no explanation for the newest development. It's depressing to me, but you're probably right -- most likely no neuro is going to think I'm very interesting until/unless things get even worse.
Sometimes I think I'm going to linger in limboland forever. :-(
Hi again--yeah, it's hard when you have other issues or history that COULD be causing some of your symptoms, and/or ones that doctors can grasp at in order to avoid fuller investigations (or just to get rid of you).
I too was told I couldn't switch neuros within the clinic at Providence (Hoyt St.). The guy I saw there was, uh, let's say off-putting--as you may have heard, or perhaps experienced personally!
Yes, you might well linger in limboland forever; me too (11 years now). More important is how you're functioning, of course. My problems are manageable (with plenty of assistance from pills and my armchair!), and I feel lucky to be able to work--though now only part-time--and to see well, etc. I haven't had an MRI since 2003 and have never had a (successful) LP, and am not being followed anymore. Some things are getting worse, but luckily not everything.
I don't think there's a shortage of good neurologists; I think it's just that even the good ones are not interested in (and/or don't have time for) long-term follow-up of patients like us that don't have clear-cut, obvious, or severe symptoms.
A lot of us just aren't going to get a diagnosis, or at least not a firm one. (I do not expect to ever get an explanation for my symptoms, and am not trying anymore.) We must just count ourselves lucky if we don't get an unwarranted "psychiatric" diagnosis.
Even luckier are patients whose neuros take time to explain their symptoms and unclear diagnostic situation to them in a fully straightforward and helpful way, who are ready to thoughtfully answer questions based on the real facts of a patient's history and symptoms, and who offer to follow the patient long-term. That must be a very rare breed of doctor. I had one who went halfway there, I suppose, but he gave up on me after a bit over a year and left me with "medical student's disease" as the leading "diagnosis." Defeat.
Hi JJ--close but no seegar. "Medical student's disease" is hypochondriasis. You read about a disease and become convinced you have it. This really happens to medical students when they start studying specific diseases.
Problem is, even though I had read a few Web pages about MS--and every other disease on the long list of differential diagnosis for sudden hearing loss--before seeing that neuro, I quickly crossed all of them off my list after reading the symptoms. Nope, don't have that, don't have that... and I didn't even really think I had any systematic thing wrong with me when I walked into his office. HE was the one who said "there's something wrong with you" (which took me aback, how he said it so bluntly) and brought up MS and kept talking about it over and over, until finally, when I described what I now know (but didn't then) is Lhermitte's, he looked me squarely in the eye and said "That's MS." What was I supposed to conclude from that?? And he said it despite KNOWING that I'd had a normal MRI already. (Which I later found out wasn't totally normal, but he didn't know that and neither did I; both of us only saw the report.)
I walked out unbelieving. After a week of researching MS in more depth, I thought, darn it, he must be right. Then, later, he diagnoses me with the "other" MS disease (medical student's). In fairness I don't think he gave this as a firm diagnosis; he did say "I don't know what's wrong with you," but all his other actions and reports painted a picture of someone who was just too worried about symptoms.
And I certainly never jumped around thinking I had one disease and then another, which is what true hypochondriacs do.
However, conversion disorder and medical student's disease do have something in common: like all other psychiatric diagnoses, they can be whipped out casually and cavalierly to get rid of unwanted patients; and for both of them the "treatment" is to NOT do further medical tests and investigations, as that simply feeds the patient's psychiatric "disease." I think that's why I was never given a spinal tap (one doc attempted it, but when it failed, she later said I didn't need one).
Sorry, got kind of off-topic to the thread; or maybe not!
I think it did go a little off topic but it had a progressive free fall and i couldnt help my self, i just had to comment. Well Nancy i think i worked out what happened to you, YOUR dr had a case of transferance, he was worried which thus became your condition lol.
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