Any tips for first Neurologist appointment?

[vbc2000]

Hi My Forum Friends :)
Hope you're having a good weekend so far.  I'm more exhausted than usual...I think I'm getting sick :(  

Well I saw my Cardiologist yesterday and while I didn't leave with a different or additional medication like I hoped, I did get somewhere.  I know you all understand how frustratingly slow progress is.  I know the Midodrine is helping but I know it's not enough.  Anyway, I finally found a medication in my research that looked promising, that didn't have side effect warnings I wasn't afraid of, lol!  I couldn't risk any medication who's warnings said anything about it worsening depression or anxiety or mood disorders.  I finally stumbled onto Mestinon.  It's down n the treatment section of this page:  

http://askdrwiki.com/mediawiki/index.php?title=Neurocardiogenic_Syncope

I asked the doc about it and he knew what it was but it's normally prescribed for myasthenia gravis, which I guess is treated by a Neurologist.  He said he would be willing to try it at some point but it's not normally something he prescribes.  I've been trying to find a Neurologist as I've mentioned, but haven't had any luck searching for one by phone who sounds like they'll be able to help.  My husband seemed to be doubting whether I would need one or not, and was convinced that when I mentioned it to my Cardiologist, he would set me straight and tell me it wasn't necessary.  HA!  I was completely honest with him and told him I wanted to know if I had any other autonomic dysfunction going on and told him how disturbed I've been lately with all my cognitive symptoms.  Getting stuck on words, not being able to get words and thoughts out, my speech being punctuated by these brain hiccups.  Much to his credit, he said he thought it was an excellent idea to see one and would have suggested it if I hadn't.  I then told him the trouble I've been having finding one and he had two suggestions within the same medical group.  One was someone I called who refered me to NYU, but the other was one he sent his own mother to!  That to me, is a very good sign!  Turns out this guy is the Chief of Neurology at a pretty good hospital in Westchester and did his residency at Mt. Sinai in NYC where I know they had or still have, an autonomic testing lab.  I'm trying not to get my hopes up too high but I am hoping he's good.  Saw my therapist today and lo and behold, she saw this guy and she said he was open to patient input and was a good doctor.  So I'm hoping once I see him and talk to him about the Mestinon, he'll agree to prescribe it.  Have any of you tried it?

So, I'd really like not to forget anything when I go to see him on 11/5 and would love input from you fine folks about what to make sure to mention, cover, ask.  Any tips would be great.

I'm also going to see my Endocronologist because of the talk here about saliva/hormone testing.  He is the absolute tops and I'm hoping that between him, my Cardiologist who I do like, and the new Neurologist, I will have a capable, helpful team.  I mentioned to my Cardiologist how bad I've felt for some of you here who have been dismissed by doctors and told it was all in your head.  He unfortunately though I meant he might do that to me...I quickly corrected him and told him how lucky I feel to actually have a NCS diagnosis which would probably make other docs take me seriously.  I wish none of you had to have gone thru that, but at least now we all have each other and can help each other...and you've all helped me tremendously already.  Thanks in advance for the help I'm asking for here :)
Stephanie

[vbc2000]

Thanks for pointing me to that thread.  I'm starting to get a little nervous about trying it but at least it doesn't have the listed side effects I'm really scared of!
Stephanie

[patient915]

I'm not sure what I mean, haha, it's hard to explain.  It was almost like I was having a flare up of my POTS and as soon as I went off of it I felt better.  It didn't make my tachycardia any worse, it just made me more dizzy, more short of breath, and more fatigued (even when I wasn't standing up).  I wrote about it here: http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Usage-of-Pyridostigmine/show/1310914?personal_page_id=1122705

[vbc2000]

When you said it made your POTS symptoms worse, what exactly are you talking about?  The tachycardia part?  I don't have that with the NCS.  Maybe it'll work for me...I hope!
Stephanie

[vbc2000]

Thanks for all the information.  I know for sure something is wrong up in the old brain, lol!  I have never stumbled over words like this and gotten stuck like I do while speaking.  My sister and husband have said "oh, it happens to me too, it's just getting old".  I think not!  I'm taking note of any symptom that comes up that I've read about in relation to dysautonomia so I can bring it to the doc's attention.  Things I would have just overlooked, I'm not overlooking.  It does seem like stuff that does happen when you get old.  Guess I'm still struggling with "owning" all this and realizing it's a little more than just getting old.  It's SUCH a process!!!
Stephanie

[patient915]

I've tried Mestinon and I had to stop it pretty quickly because it made my POTS symptoms worse.  I didn't have any bad reactions or anything, it just for some reason made my symptoms worse.

[Heiferly]

Stephanie,

We have some info on Mestinon on our treatment Health Page:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196

We have definitely had some community members who have been on it, though there's so many of you guys that I'll admit I'm not sure who is active currently who might be taking it or have taken it in the past.  I have not personally taken it but I can tell you a little bit more about it from what I've heard from other people who have:

Basically, like any other dysauto med, for the people it works well for they're ecstatic and for the people who can't tolerate the side effects, they don't care for it and stop taking it.  LOL  I will say that the potential side effects of Mestinon are a little more ... I'm not sure what the right word is, but ... maybe troublesome? ... so this is (I believe) one of the reasons why it is not usually one of the first-line medications tried in dysautonomia.  However, that being said, I know of MANY dysauto patients who have not had success with the first-line treatments who have tried Mestinon.  

For those that it works well for, it has some very distinct advantages, even over "tried and true" Midodrine and Florinef.  It increases upright BP *without* increasing supine BP, so there's not that worry about supine hypertension, which is very helpful for some patients!  Also, as some patients have problems with gastroparesis, Mestinon can help with the symptoms of delayed gastric emptying!  So far as my personal hearsay goes, when it comes to side effects, I've heard of people having unpleasant side effects which caused them to discontinue the medicine and look for something else, but nothing dire like a terrible drug reaction or anything.  


Oh, I did want to mention ... when I talked to my cardiologist early on in my illness (many moons ago, LOL) about my cognitive symptoms, he did not think they were associated with my autonomic dysfunction.  Now, let me preface this with the fact that I LOVE my cardiologist and I think he's very knowledgeable about some aspects of my condition ... BUT ... when I got heavier into actually researching dysautonomia in actual medical textbooks and reading more and more journal articles I found that he'd been mistaken.  One component of the symptoms from orthostatic intolerance is from cerebral hypoperfusion (reduced oxygenation of the brain tissue).  This is the part that accounts for the cognitive symptoms.  In fact, you can be getting reduced cerebral perfusion when upright EVEN IF YOUR BLOOD PRESSURE IS READING "NORMAL" WHEN TAKEN ON YOUR ARM.  What is going on in your head and what is going on in your arm do not necessarily match at a given point in time.  (Anyone who has felt sick as a dog, only to be shocked to see their machine tell them they are fine already knows this, right?!)  

I do have at least one (probably a few) journal articles on blood velocity in the brain that help explain this, but they're not just full of medical jargon ... if I recally correctly they're also a little math intensive.  If anyone wants them anyway, I can see if I can dig them out.  I really need a secretary that could put these all in an index for me, hahaha.