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I have had papilledema since 2002. But since my lumbar punctures have shown normal pressure, they don’t believe I have high intra-cranial pressure. Thanks to the Driscoll Theory, I understand that the pressure may be mildly elevated, but not show up on lumbar puncture. So I very likely would benefit from Diamox…once I find a doctor to prescribe it. But currently, I can’t even get an rx for a pain medicine.
Hon, if you have papilledema (or “pseudo-tumor cerebri” as we call it), and the doctor DOESN’T prescribe Diamox, said doctor had better have a VERY GOOD explanation as to why the HECK you are not on that medication. And if they DO have a very good explanation (let’s just say a BAD allergy to sulpha meds, for example), they need to tell you what they are going to do to treat it. This is NOT something to ignore, Hon. Eye doctors usually treat pseudo-tumor cerebri with Diamox, and don’t even NEED an LP to do so. Heavens. My friend, if you need to see another eye doctor, PLEASE DO SO. K? Promise? Big hug, Diana
Dr D,
I was on diamox briefly thru my pregnancy they quickly took me off because it was not tested on pregnant women (at that point anyways) they put me on topamax 8 years ago and have been on it ever since.I have had papilledema since 2002. But since my lumbar punctures have shown normal pressure, they don’t believe I have high intra-cranial pressure. Thanks to the Driscoll Theory, I understand that the pressure may be mildly elevated, but not show up on lumbar puncture. So I very likely would benefit from Diamox…once I find a doctor to prescribe it. But currently, I can’t even get an rx for a pain medicine.
Thats one thing i was very confused about. I always show very elevated pressures in my spinal taps. Have even tapped out before. So i guess i actually do have pseudotumor ceribri. I have not let them give me a spinal tap since last june though. Thats when i started suspected the chiari. They resubbmited the mri to be reread looking for chiari. And a 3 to4 mm was reported. My neuro optamolgist said thats from all the spinal taps they have give me.
oh it very much is related to it 🙂 i have very high intercranial pressure. psuedotumor ceribri and minimil 3 to 4mm chiari. i have had i for almost 8 years. shunt placed in dec of 04 removed in Jan of 05 (meningitas twice. Was all thru the tubes of the shunt) my spinal tap pressures range between 40 to 50 usually. sometimes a bit lower. But i have also topped out.
I should also rephrase the question. does anyone come into the dr’s office with really high pressures. Then they go down by a couple numbers the longer they sit in the office?i have for years! my neck is also very rock tight. i cannot have people give me massages or anything i about fall over if they do. lol
Whatsreallygoingon,
My symptoms started totally looking like MS about 3 years ago, with exacerbation’s 2-3 times a year that left me worse and weaker after each flare. Prednisone helped tremendiously. But, no lesions on MRI’s. I kept looking at MS and when the info about CCSVI was coming out, I read up and watched it for a while. Then, in 1/2011 Arizona Doppler was going to be in Seattle to do CCSVI screenings and my husband and I decided to get the imaging done, as none of my doctors were figuring anything out at the time. While waiting for my appt time, I had convinced myself this was a waste of time, that I couldn’t have CCSVI, etc. And yet, I had/have it, and not a borderline case, but pretty bad (met 4 of the 5 Zamboni Protocol criteria). Back then, it was thought that anyone with CCSVI had MS, by default. I think that view is changing, though I think untreated it will progress. Eventually people like you and I will/would probably have lesions. I had venoplasty last April and my reduced flow was severe in several veins. I went back again in July 2011 to have my ovarian vein blocked (trying to deal with heavy, heavy bleeding and from my first venography we knew that because of all my vein issues a lot of blood flow was going backwards through the ovarian vein to the uterus) and a stent put in the left iliac because of May-Thurners and my IR looked at my other veins while I was in there and all but one were exactly the same as they were before my first venoplasty just 3 months previously. I need stents, but my IR wants to wait till the dissolvable stents are available in the US (years away still). Since then I learned more on this site about how all these things (POTS, EDS, CCSVI, Mast cells, etc.) are interrelated.Some of my neurological symptoms are still better since having my CCSVI treated, but most of the symptoms that went away for the first 6 weeks after the first venoplasty, are back… and some, like the POTS, continue to get worse. I didn’t have any relief after the second venoplasty, except that my left leg has stopped swelling due to the stent placement. Looking back, the day before my procedure I had a severe flare up from getting too warm, so mast cells or cytokines were probably running rampant… not a good place to be when having this procedure, and I think that is why I noticed no changes. Also, my left juggler, which is/was 80% stenosed, has been painful off and on ever since that venoplasty. Not really sure what that means, but makes me think things are swollen and backed up.
Im almost postive all my brain stuff has ALOT to do with this! 7 years ago i was diagnosed with pseudtotumor ceribri during my pregnancy. My preussures get insanely high. I have topped out on spinal taps. my normal range is inbetween 40 and 50ish. I started diamox during pregnancy but it was never tested with pregnant women. So they didnt keep me on it long. After the pregnancy they went spinal tap happy! i had around 30 to 40ish spinal taps. with no relief. Finally getting a shunt put in dec 6th of 04. only to get meningitas twice. (meningitas being all thru the tubes of the shunt i had to get it removed. Or i would keep getting meninitas) After the shunt removal it terrified me! so i just sufferd with no relief. I have been on topomax ever since. And still have horrible pressures. I am monitored every 3 months with a neuro optomolgist. and neurologist. They all say now i need another shunt. But i am prone to meningitas. So noone will operate. Unless it is a life saving emergency. Even with all the treatments and weight loss. Nothing has changed. I cant help but think there is more too it. Esp since the chiari diagnosis.
Ourfullhouse, crazy with the st louis thing. i just started seeing specialist there. “i live about 2 hours away” my daughter and i got diagnosed with EDS type3 in december. in st louis aswell. i have yet to make up my mind about the doctors there. Though they did make an attempt when they was wrong (saying pots and EDS was not connected) to run me down in the hallway to tell me i was right. so they are atleast trying. 🙂 As far as the MS thing. In my Gut i have this feeling this is what it is. But you would think with 5 mri of my brain in the past 18 months they would atleast see lesions right?
Dear Whatsreallygoingon,
Curious, did you have a muscle biopsy that gave you the small fiber neuropathy DX? I had one about 18 months ago, in this journey of getting DX’ed. Mine was a surgical biopsy as they wanted a pretty large piece of leg muscle to test. My results were smallness of type 1 fibers and increase in internal nuclei. My neurologist also writes it up as “myopathy with central nuclei”. I also have abnormal EMG and nerve conduction studies.I haven’t seen anyone else on this forum mention having this DX or these kinds of testing and wondering if people just haven’t mentioned it, or haven’t had the kinds of symptoms we have had that led to this line of testing?
I rarely get the kinds of shocks you talk about, but have a friend who is just like us here (wish she would join in here!) and she gets the shocks very badly. She also has had a muscle biopsy (though a simple punch one) and the abnormal EMG/NCS.
I don’t know if that helps or not….;)
Hi there. my small fiber neuropathy was diagnosed at a autonomic clinic in cleveland. aswell as pots. I did however get a muscle biopsy done here where i live. (cause they suspected my pots and stuff if from mitochandria issue) I did not show mito. However it did show Fatty infiltration of the muscle and possible neurogenic atrophy (my muscles are basically melting away to much fatty infiltration for them to confirm it.) my muscles get very achey. And sometimes it takes me awhile to even make a muscle. lol i have to really concentrate on making it when it gets real bad. “weird right?” With all my diagnosis they are leaning more towards autonomic neuropahty now and checking more immune disease’s I go in on the 2nd for more autonomic testing. and a ton of blood work.
I have ridges in my nails going virticle. When i turned in a coupon to get a free manicure the women commented asking me if i was sick. Interestingly you talk about MCA. i have had high tryptase results 3 times and twice they have been just at normal range. My endo says she thinks i have mca. but since it is not giving me problems not to worry. She did send me to a hemotologist. Who ran the test. And told me if it comes back high he will perform a bone marrow biopsy. So i assume it came back normal as has never contacted me. i Also am very deficent in my vit D b-10 they also have me on q-10 and l-carnitine as those levels off aswell. a prior backround i am diagnosed with EDS hypermobility, Pots, small fiber neuropathy, pseudotumor ceribri and a minor 3 to 4mm chiari. I find your articles very interesting. esp because everything you talk about i have been diagnosed with! lol Ty Dr Diana for your wonderful site!
