Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hi, for those of you on Diamox (or similar), I am curious if your doctor routinely checks your labs - screening for low potassium or acidosis - or not.
If so, what kind of routine schedule does s/he use? And which doctor is it?
Neither of the NOs I've seen have ever mentioned checking labs. I don't routinely see a neuro. My primary care doctor is great but knows little about IIH, she will gladly order labs if I ask her to though. My OB is equally clueless about it. And why should the latter two know? It's not a medication they prescribe.
I feel a bit like I am slipping through the cracks of this fragmented medical system. I called my OB's office the other day as I've been feeling mild shortness of breath even when at rest (outside what I feel is "normal" for pregnancy). The triage nurse took over a day to get back to me, so in the interim I decided F- that, I should at least get my vitals and labs checked and have a doctor look at me, and went to the ER. My potassium was low, mild EKG changes. I wasn't even thinking about mild acidosis that can come from Diamox at the time and didn't think to steer the ER dr in that direction work up wise. Now that we have ruled out other pregnancy complications I am thinking that I may be having that effect just enough to feel my breathing is a bit off.
I am all for being an informed, self-advocating patient, but really - a doctor needs to be figuring out some of this stuff for me. My health needs to be better optimized than this. There is just no plan in place. Generally I feel that the prescribing doctor should be in charge of monitoring side effects, and yet the thought of having an eye doctor who seems to mostly just care about the state of my optic nerves manage me systemically isn't terribly reassuring either. Any thoughts/recommendations? Would it be overkill to ask for a perinatologist? Should I just go to my primary care doctor and tell her what I think I need?
I'd be rolling my eyes with exasperation - if it didn't hurt to do that!
Thanks!
If so, what kind of routine schedule does s/he use? And which doctor is it?
Neither of the NOs I've seen have ever mentioned checking labs. I don't routinely see a neuro. My primary care doctor is great but knows little about IIH, she will gladly order labs if I ask her to though. My OB is equally clueless about it. And why should the latter two know? It's not a medication they prescribe.
I feel a bit like I am slipping through the cracks of this fragmented medical system. I called my OB's office the other day as I've been feeling mild shortness of breath even when at rest (outside what I feel is "normal" for pregnancy). The triage nurse took over a day to get back to me, so in the interim I decided F- that, I should at least get my vitals and labs checked and have a doctor look at me, and went to the ER. My potassium was low, mild EKG changes. I wasn't even thinking about mild acidosis that can come from Diamox at the time and didn't think to steer the ER dr in that direction work up wise. Now that we have ruled out other pregnancy complications I am thinking that I may be having that effect just enough to feel my breathing is a bit off.
I am all for being an informed, self-advocating patient, but really - a doctor needs to be figuring out some of this stuff for me. My health needs to be better optimized than this. There is just no plan in place. Generally I feel that the prescribing doctor should be in charge of monitoring side effects, and yet the thought of having an eye doctor who seems to mostly just care about the state of my optic nerves manage me systemically isn't terribly reassuring either. Any thoughts/recommendations? Would it be overkill to ask for a perinatologist? Should I just go to my primary care doctor and tell her what I think I need?
I'd be rolling my eyes with exasperation - if it didn't hurt to do that!
Thanks!
AND, as in my previous post, the reference ranges are different depending upon who runs the labs. Sod that (hat-tip Keren).
I, too, say that the prescribing MD should be accountable to schedule and ensure that labs are run on an appropriate basis. But, if you have a better relationship with your PCP, maybe it'd be easier to set such a schedule with her/him and bring your questions/concerns to that table? Sure hope your breathing & potassium are addressed.
Isn't it a darned shame that eye-rolling is a no-no now? Such an emphatic waste of great body language.
In the UK it is all different(??), the GP refers you to the consultant. the consultant diagnoses the condition and writes the recommendation for the prescription and any lab work that needs doing - this is then passed back to your GP. The good consultant give you blood sample bags for the lab work to hand in at the GP surgery / local hospital walk in clinic, the less good ones just write the recommendations in the letter. Even my bad old neuro told my GP that diamox needed potassium checks every 6 weeks. (didnt write up sample bags of course...)
Where our system then breaks down is the ones who dont write the sample bags cause then you get stuck in the GP waiting line. it takes me 6 weeks to book in to see my GP, then 4 weeks to book a blood test at the local clinic then another 6 weeks to book in to see my GP to discuss the results. so i have only had 2 potassium checks so far. This is in part just NHS and the lack of GPs but also becuase the GPs dont see the stuff from the consultants as their priority (dont matter which side of the pond you are on for that eh?) and without me going in for an appointment to tell them i am due for a potassium test they wont/ cant automatically schedule one.
In contrast for my thyroid condition the consultant asked that i get my thyroid checked every 2 months - she wrote out and gave me signed sample bags and booked repeat blood tests for me onto the computer system. As the tests have been pre-ordered by a doctor and the sample bags filled out, i can book the blood test at the GP surgery with out having to see the GP or can just go to the hospital walk-in clinic and queue up whenever i wish, in that way get them done every 2 months without fail. Sigh - such disparity.
At the end of the day - there is supposed to be a lead health career overseeing with our case and drawing all these elements together. Weather that is the GP or the Neuro and the Ophthalmologist - but nope RN far too often it is us and its not good. It seems if we dont keep on top of these things no one will.
Keren, you have my sympathy. That sounds like such a hassle! I will be grateful I at least have the freedom, for the most part, to see whomever I want to. If I feel I should see a specialist - I schedule an appointment. The system is not perfect either but does seem a lot less cumbersome and limiting than what you describe! A care coordinator sounds great though. Of course the price of our health care freedom is our "health care crisis" - can't have everything, I guess. ;)
If i just need to see any doc for an ear infection or some antibiotics or the pill - i ring up get a free appointment within 48hrs and get any drugs i want all for a set 7 per prescription (or for me totally free because i have a thyroid condition - same with cancer, angina, epilepsy, diabetes and a few more) and if i need the ER or a consultant again its free - if i need any operations or after care or walking sticks or breathing apparatus its all free - in that way its a great system - few people pay for health insurance, and if they do pay to have private appointments its only because they would want to cut down waiting times if they did get seriously ill - the problem is when you need prolonged care and want to see the same person because your case is complicated, all of a sudden his particular diary is crazy stupid - (they rely a lot on temps and locums to keep things moving in the day to day stuff) - and because they have so many thousands of patients on their books you are lucky if the r reading your notes as you walk in through the door 4 weeks later, and like i said before the wait is stupid. oh well. maybe we somehow need to mix our 2 systems together to come up with something in the middle.