Should I Even Bother Going?

[Notgivinup]

I have an appt. June 3 to see yet another new neuro. Honestly I don't even know if I should bother. I don't even know what to say to him that I haven't said a million times before. None of the meds ever work consistently on me. I'm functioning enough that I'm not in a wheel chair, or passing out. But I'm still miserable. You guys know what I mean. I mean I don't think I appear sick enough for anyone to care. They can't see what I feel inside. Any way this guy is 69 yrs. old, he's suppose to specialize in Neuromusculoskeletal Medicine and he's an OMM? Not even sure what that means. But I asked his secretary if he knew how to treat POTS, she called me the next day and said he'd never heard of it!! But I guess he's willing to see me, as they did not cancel my appt.

I just don't know if it'll be another waste of a co-pay and time and energy. I'm soooo scared of just getting blown off, and leaving crying. Already did that with a rheumy, who refused to even look at me. (long frustrating story, worst appt. ever!).

At this point I'm so confused, I know I have pretty classic POTS, small fiber neur. and I'm hypovolemic, but no one seems to want to find the underlying cause of it. I do.

I really need your help guys. What should I ask him to test for? Oh, and I'm having trouble getting my blood work records. Why do they make it so hard/rhetorical.

[Tachy Phlegming]

OMM?

http://www.jaoa.org/cgi/content/full/108/2/87

If he hasn't heard of POTS, maybe explain to him that sometimes it progresses to MSA. That seems to be something neurologists know about and know something about how to treat. You might also mention NCS so he gets an idea of other autonomic problems and remembers what he studied. And you might just say that your body compensates for low bp by raising your pulse, you are somewhat more (at least to all appearances if not in actuality) functional and that is the big difference.

Tell him that you've been on Mestinon. They usually have had patients with Myasthenia Gravis so they may be interested. Explain to him the mechanism of how that works. Tell him about the small fiber neuropathy.

Then ask for some of the tests you may want. If you think you need a rotating schedule of medications (as it seems from your posts), explain that they work for a time and then you get no benefit but you think it might be good to go on and off some (pick out what you think will work).

If you want to know more about the mechanism of what is wrong, pick out what you think might be wrong and ask if he can order tests for it.

If you think you need to know about EDS as a possible problem (even though they found small fiber neuropathy), ask about that and whether he has treated patients with that. Some of the people on here check one thing out and not another because they find one -- but it's a syndrome so it's hard to know whether really some of the other possibilities need to be checked. If you think there's something else going on, ask if he can order a test for it.

I guess try to go in positive, encourage him, and tell him you were looking so forward to the appointment and had a lot of ideas for how he could help (and if he doesn't know something, you probably do know what needs to be investigated and he can look it up after the appointment if he needs to). If he can't help, ask if he knows someone who can.

[Chaos]

Boy, I can sure relate to your apprehension about this. On the one hand, having worked with a lot of docs, when I see age of 69 I think "oh no, old style doc that thinks they know everything and won't listen to the patient." On the other hand, being an OMM, he may have a different style of practice than your average 69 y/o MD.

Do you know anyone who's seen him before so you can get a sense of his practice style? Tachy Phleming has some great suggestions if the doc is willing to listen to you in the first place. That seems to be the key.

I HATE paying a doc, even just a co-pay, when they insult you by not listening and blowing you off. There have been a few times I've thought I should call the insurance company and tell them to demand their money back! Don't think it'd work but really! How frustrating to pay them for being demeaning. My other favorite thing is paying the doc for an "extended visit" when I'M the one teaching THEM about the whole topic.

Good luck with your decision. Since "hope springs eternal" I guess we all keep trying to find answers. I was heartened when I read someone's post (maybe ToddM's?) that said he'd gone thru 30 docs before he got some answers. Helps to know others are fighting the same fight.

[ana_22]

I would give it a go.

The THIRD Neuro I saw has been the right match for me. I have stuck with this one.

The first one was inexperienced, quite young, and I only saw him as I could get an appt within a week. He did some bloods and reported to my dr I looked quite well. I looked terrible, gaunt and pale!!!

Next neuro was very experienced and I had seen him five years prior for numb sensations. He veiwed MRI first neuro had done and concluded everything was ok. I went back to him five months later only for him to say I was fine and if this was serious I would have to wait for other symptoms to show up and that was nothing I could do untill then. I cried when he said that as I was already dizzy,nauseated, could stand for more than a few mins, barely eating and more crap. I thought what else had to happen for him to take me seriously!!!! I wish I hadn't of cried, but oh well!

After that I thought I will just keep searching until I found someone willing to help. They didn't have to have the answers on the first visit, but they had to be willing to try & find the answers.

The third neuro I found word of mouth. They were willing to do more tests like emg and other scans and vestibular testing. With this neuro we have figured out I have vestbular damage, periphiral neuropathy and a few other things. I'm still seeing them and I have confidence in them to really listen to me and help me. This neuro has been nothing short of wonderful!

I guess what I'm saying is keep seeking answers while you still can. Be honest with the new neuro and see where it goes. If your not happy with him go somewhere else.

I'm not from the USA so cannot recommend my neuro, though I have heard this place is really good for autonomic disorders. Dr barboi at Froedart in WInconstin. Not sure if this is close to you?

Don't give up!!!!!

[yogini]

You do have to keep trying, but I think it's better to see a Pots specialist from the dinet list or someone that is at least familiar with pots if you can find one...

[potsgirl]

I'm just going to say one thing....What's your Dinet name?

[Notgivinup]

I'm just going to say one thing....What's your Dinet name?

Cute, Potsgirl.

[Notgivinup]

Thanks everyone. Tachy, great pointers! I just don't have any new ideas of what to ask him to look for. One doc wanted me to get a cervical spine MRI, however my ins. wouldn't approve it so they just forgot about it. I guess he must of had something in mind, although he never told me what. I know when my neck hurts or is stiff,symptoms are worse. But my POTS didn't start with neck pain. It started with morning headaches, nausea etc. Those two just went away by themselves. Then the lightheaded brain fog, etc started being primary symptoms.

I just remembered something, a lot of nights I would lie my head down to go to sleep and my head felt like a bowling ball on my neck, hmmm, just thinking out loud here. I wonder what that means.

Would it seem too "pushy" to bring a print out of what causes POTS and/or what medicines help? Would this insult him? I'd hate to get off on a bad start.

[firewatcher]

NO, it is NOT too pushy. This is YOUR health! I fought this same angst before a recent cardiologist appointment; I didn't want to go, but my primary doc and Vandy said I should. It was one of the best appointments I've ever had. You may not have all your records, but you can bring a lot of information on yourself. I always bring:

List of current meds, dosage and why I take them

Complete medical history (chronologically, even including my adenoidectomy at age 5 and first menses .....everything.)

Current symptoms/diagnosed medical issues (with diagnosing doc)

List of ALL my current physicians, including group, phone and fax numbers, further down the page I have a list of previous/consulting doctors.

This cardio (and many nurses) have mentioned how they wished all their patients would do this. You may not have all your lab results, but by showing that you know what tests you've had and the difficulties other docs have had with your diagnosis shows a dedication and honesty that should make him take you more seriously. I bring articles to my primary doc all the time and he encourages my investigation as long as we can reasonably discuss things. Whatever articles you bring, keep them short and relevant and have a list of questions prepared to ask the doc. Good luck and keep us posted!

[Mary P]

My first thought was exactly what potsgirl said. Keeping that in mind I must say that it was the 4th Neurologist I saw who cared and gave me hopes of some sort of help. I'll see him on July 12th. He is a N of movement disorders and we surely do have a lot of problems with movement.

Another thing I've learned to do is keep a close eye on blood and urine tests, watching closely for anything indicated with 'hi' or 'lo'. My GP pays no attention to these so I've had to do research on these areas myself and then present this info to the N. I have some interesting info for my next appointment and will post something if I'm correct.

Mary P

[HopeSprings]

I could have written this word for word. The apathy, the apprehension, the sheer mental exhaustion of yet another Doctor, having to explain it again and AGAIN, feeling SO awful, but looking perfectly peachy and mostly ...wanting to uncover "the root cause" of it all! God, how I know. I have a feeling this Dr. isn't going to know diddly squat, on the other hand you just never know! This is why I seek out Dr. after Dr. (with large breaks in between when I get sick of it all) because you just never know when you might stumble upon the one who could help. If there is any possibility that he may know something, I'd give him a try (just keep expecations low, but hope for the best). Good luck.