Okay, well, I guess I'll just try and post everything on here, since I'm new and could use a little support. I've had multiple issues with my body and my health since I was little. I got my first set of tubes in my ears for a Eustachian tube that wouldn't work properly when i was only three years old (and have had five more put in since then). I've been diagnosed with asthma since i was eight. I've always been a little clumsy (lol, I don't know if that's an actual medical ailment though). I bruise easily. I've been told I'm a bleeder, and anytime i go on an airplane for a trip longer than 6 hours, my lower legs, ankles, and feet swell up like blimps (even if i do exercise or walk around and drink lots of water and little salty foods). I've had IBS for at least the last 6 years (I'm sick so often, everyone thinks I fake it). I've got TMJ and my jaw gets stuck out of place any time I lay down. I currently have Depression, Anxiety, and PTSD. I've been getting migraines ever since i turned 20 (I'm now 27), and they can get so bad that I will completely lose my sight for up to 30 seconds (I'll see just a bright white light and nothing else); lose the ability to talk; or I might start mixing up words and start stuttering (which makes it impossible to understand me); I sometimes lose the ability to think clearly (which is super frustrating to me, because I know i have something to say, I just can't figure out what); sometimes it will make me dizzy or make me stumble; sometimes it will make me stumble (ya, those were all just for the migraines). I've got a bum knee for bad running form trying to train for a marathon (I never made it to the marathon; I can barely walk without pain now). I've got nerve damage to my right arm and muscular atrophy in my right hand, my right shoulder constantly pops out, and I think it's all starting to do the same on my left side as well, I just haven't gone to the doctor for that side yet. My back has recently gotten all messed up, but I don't know what's going on with it. I had an appointment for a chiropractor, but I had to miss it because the doctor thought I had a tumor. Turned out I actually have Pseudotumor Cerebri (Idiopathic Intracranal Hypertension). I was only diagnosed with that about a week or so ago. Since then I've had one MRI, scheduled another for later this month, have had two neurology appointments (so far), have another scheduled for Monday, had one lumbar puncture (which freaking hurt! He couldn't find the space between my spinal bones... ), and one ER visit. During the MRI they asked my if I was claustrophobic. I said no. Apparently I was very wrong. I freaked out once the noises started and I realized I couldn't even see my toes (they didn't notice; the freaking out was all in my head... and my heart; if they'd taken my pulse during that thing they would have thought I was having a heart attack (oh ya, I have a minor heart problem, and with the PTSD, the sudden sounds really messed me up)). I was so relieved when i realized the helmet they put me in had a tiny mirror so I could see out. My 40 minutes in there seemed like 5 though, since I was worrying so much and trying to calm myself down. And during the Lumbar Puncture, they wanted to test my CSF pressure, so they got out their pressure reader. My CSF Pressure was so high they couldn't read it, it just shot out of the top (My husband was there and he told me about it all in all it's gruesome details afterwards). They're testing my CSF too, but I haven't received the results yet (hopefully Monday!). I've recently started losing my peripheral vision (that's how i originally got diagnosed). I went to optometry and told them I had trouble seeing and they looked in my eyes then sent me to ophthalmology. Ophthalmology told me I had Papilledema and referred to a Neurologist. And now I'm here. Okay, I don't know if I put everything in here, but I wasn't very orderly writing this, so I'll say it's good for now. Please talk with me! Thanks.

P.S. - I don't want to go blind!!!!!

Hi boo.

Welcome to the NeuroTalk Support Groups.

I'm sorry you're dealing with so much and I hope you find some answers to your health issues and start to feel stronger soon.

There are quite a number of posts on these different forums regarding Pseudotumor Cerebri/Idiopathic Intracranial Hypertension.

You might want to try a full forum search. That feature is up near the top of the page under the NeuroTalk banner.
I just did a full forum search using the keywords pseudotumor cerebri and found a lot of posts.

Hydrocephalus Forum
General Health Conditions & Rare Disorders Forum
Headache Forum

There are also a number of older posts here on the New Members Introduction Forum from people who are dealing with Pseudotumor Cerebri.

The PTSD forum here is quite quiet, however there is the sister site which is PsychCentral
http://psychcentral.com/

For some of your other health problems, you might just find it helpful to have a look around the list.
If you need any help navigating the forums, just post a message and someone will be sure to help you out.

Welcome to NT!

You are at the right place for great support and understanding!
You are not alone in what you are facing. Many caring people here to help.

Make yourself right at home, post wherever you feel inclined. Lara has given you some good places to get you started. There's a lot of good information at the top section of most of the forums called the 'stickies'.
Lookin forward to getting to know you.
It's great to have you!

Caring,
Rae

Hi Boo,
When I see a list of symptoms like you have, that seems difficult to connect with onset of migraines at 20 yrs old...I think of my path which lead to Lyme Disease. I had unexplainable symptoms for years like sudden brutal migraines. You have and all the other symptoms like clumsiness, pain, your TMJ/jaw issues, etc. It may not be the answer but, do check it out.

Look at www.ilads.org
It is a professional organization dedicated to Lyme Disease treatment which inexplicably has become controversial

Look at the symptoms:

http://ticktalklyme.wordpress.com/symptom-checklist/

There are so many things it could be. The best piece of advice I can give you is find a doctor whom you trust and will work with you. I know, easier said them done.

My best to you, take care and welcome to the forum, Diandra

[QUOTE=Diandra;1061788]Hi Boo,
When I see a list of symptoms like you have, that seems difficult to connect with onset of migraines at 20 yrs old...I think of my path which lead to Lyme Disease. I had unexplainable symptoms for years like sudden brutal migraines. You have and all the other symptoms like clumsiness, pain, your TMJ/jaw issues, etc. It may not be the answer but, do check it out.



-------------------------------------

Wow. That's pretty interesting and would explain a lot! If my doctor doesn't say he's found anything new when I see him tomorrow then I'll ask if he'd mind if I got tested for that as well. Thanks!

Welcome to Neuro Talk. You found a good site with compassionate people. Anytime we have to deal with such medical issues, it helps to have a few friends. You will make friends around the boards here, and it will help you to deal with your medical issues.

One thing that may help in talking to all of us, is to break your paragraphs a part a bit more. Your posts will be easier to read.

Glad you have a good Neurologist. That is the kind of doctor I would seek first. You also have more than one issue going on. If at all possible seek a physiatrist. (Not a head doctor). This type of doctor, treats the whole person, not just a set of medical problems. They tend to think outside the box a bit more than the average doctor. Remember to bring your husband with you to your appointments when at all possible. Doctors tend to pay attention better, when someone else is in the room with you for discussion.

Keep a journal of all your symptoms, list all things you are experiencing.

Did you have a fall or some kind of injury to your head in particular?

Sorry the LP hurt. Normally they don't hurt like that. You also can tell them to stop during any procedure where you are not comfortable. Most of the time they want it to go smoothly, and will do what is necessary to make you more comfortable, with less pain. There is something called Doppler, a machine to help guide the needle if they have trouble. Floroscopy is another in use to help guide the doctors. I have Doppler, just to draw blood, as my veins aren't so good at this point in my life. I don't like them hunting and digging for a vein. Two stabs and I ask for the help.

There are many forums to explore. Break down the issues you have, and more people will be along to try and help. You are young, that is on your side toward healing. Just believe you can get better with time and therapies. I wish you all the best Boo. Again welcome to Neuro Talk. ginnie

[QUOTE=boo_♥;1061874]Ok. Just an update: They tested my csf and no indication of Lyme disease was found. At least checks one thing off the list.

In checking, Lyme disease is not found in Hawaii. So unless you traveled somewhere else where the ticks that carry Lyme disease are you would not have that to worry about. Where I live we have lots and lots of it. Hope you find an answer.

Update!
So not a lot has changed here. Haven't done another L.P. yet. My diamox has been increased to 6 pills a day and I'm now taking another water pill as well (HCTZ), but nothing has really changed. My side effects get worse each time my dosage goes up, but I'm sticking with it for now. The doctors sent me to do an MRV (like an MRI that looks at your veins). Now they're having to test my blood for indicators of a past blood clot or stroke, because they saw something suspicious in the MRV (it was just an abnormally narrow vein). And while seeing the chiropractor, they told me they found some issues with my spine all the way up, with the worst being where my head and neck connect. Who knows? May my spine or a blood clot or stroke cause all of these issues. I'm not going to lie, I've been secretly hoping that I'll go to get my back cracked a few times and suddenly I'll be completely healed. That would be nice...

Have you checked out Ehlers Danlos Syndrome? I am not saying that you have it but most of your symptoms fit.