Racer

Just want to let you know that NO, your NOT in a minority on this site One thing I have learned is that people in the community throw around "pots" a lot sometimes as a more generic term. Most on this site have some variation of blood pressure and heart rate rise or fall that is causing symptoms. I have the same as you with autonomic dysfunction with ncs.

I have no choice but to accept it all. I am stuck in such a deep hole and dont have the energy or motivation to fight any of it. The problems affecting my life are much more complicated and depressing then I can describe. I have always lived in the grey area of being to disabled to get a decent job, but not disabled enough to not work. All the jobs I have had, they hired me as "that dumb guy we can send out in the rain to dig a ditch". For me, going on disability is sort of like giving in, it is not a option. The people who judge me based on how smart they think I am would win. What is a person to do when they are to sick to keep a job, but cant accept going on disability?

One thing I keep thinking about is how he told all my (remaining) friends about my medical problems, how I am causing my illness myself, etc. He was also very discriminating and sexual harassing. This guy used to be my friend. Now I so badly want to sue them or something, but I know I would just be making more trouble for myself. I hate having to just accept this and not being able to somehow make them pay

Thanks everyone I am going to try to apply for some sort of assistance.

I have asked them every blood test if they checked. I am told my levels are good or "therapeutic", but then, I am never really sure if they actually know what they are talking about?

I have been in horrible pain today, then to make things worse I got fired from my job, meaning I lost my health insurance. Then I open up mail to find that my driving privileges have been revoked. People sure do know how to kick you when your down! I dont see myself recovering from this

I take depakote twice a day, headaches/migraines cured (well mostly).

Yeah, I know I am getting sick when my tics, ocd and that nervous energy goes away. That amazing calm tranquil feeling must be what normal feels like? It seems like in the minds of most doctors you cant mix psych issues and physical illness, it is like trying to mix water and oil. Luckily some amazing doctors are starting to bring down the barriers to legitimate medical treatments.

Scratch that, I called today and I was told by the nurse that the dr didnt know what I was talking about, he didn't have that in his notes. He didnt remember anything about the visit or anything about me as a patient. He said that I should just take a extra florinef. I need the extra hydration when I am vomiting (I explained to him). No more trips to the ER for this, since my mom now gets mad at me when I go (for a few reasons). I have run out of help and I give up.

WOW, if you think you are having seizures, and you have not had any tests done, no EEG, have not been seen by a neurologist, then if I were you, I would go to the ER! I think it is like the standard protocol for ER to at least do a EEG and give a mega dose anti-seizure injection? From what I understand (and what I was told), multiple uncontrolled seizure, is a absolute emergency! I think it is especially true when you don't even know what type you are experiencing! I think it is totally unacceptable for them to to have you just wait around and keep having seizures waiting to go see a neurologist.

I think I am going to call and ask for the prescription. When I go to the hospital for fluids, they usually just open up the flow and dump it in me as fast as they can. A few times I have had fluids threw a pump, it was a big difference from the drip. My biggest worries are fear of a port or picc line. I am also worried about how it would affect my life... what this means in the whole picture of getting better.

I am in the process of trying to figure out the epilepsy/seizure stuff. I am waiting to see a doctor who can tell me more. I also have migraines and auras, and take depakote twice a day to try to prevent seizures and migraines. Have you had a 24 hour EEG yet? I know they normally do a quick EEG at the hospital, but a longer 24hr or overnight sleep deprived EEG might be useful.

Hoping someone can share there experience of what it is like to use daily, weekly, or as needed (but often) IV fluids? My cardiologist suggested prescribing me fluids. I found the thought a bit shocking and just said no. I don't know why I quickly said no, since the reality is that I end up at the hospital 3 times a month just for IV fluids. I only go for fluids when absolute necessary (cant get out of bed and vomiting). I am considering it, and I know regular IV fluids would help, but I just don't know if the reward is worth the risk?

Marigold, I am in the same boat! I am in the process of getting a more accurate diagnoses to explain ataxia. My symptoms have been more gradual, but I am REALLY noticing it lately, and it is really concerning me also, so I know how it must feel for you. My walking has become rather clumsy, although my problem is mostly with my hand coordination, trunk weakness, eye control and speech. It is all really apparent to me when the neurologist tests me for this. I have lost the ability to tie my own shoes (lol) but other that it is more frustrating then anything, knowing your body is not cooperating with you. I have found that when frustration sets in, I just need to stop, take some deep breaths and calm myself. Trying to stay calm and relaxed is what is helping me the most to deal with this.

I had a long talk with my mom, and I got to this doctor today. WOW it was AMAZING! FINALLY, a doctor who wanted to really help me. He admitted he didnt know a whole lot about dysautonomia, that he has only ever seen it in a few of his patients before, but that he WILL find the doctors who do know, and send me to the hospitals who are able to help me. He said that I don't need to worry, that he will talk to all my doctors and set this all up. He will schedule the appointments and everything and that I just need to wait for him to call. I will be a bit nervous waiting for this call, but so far, this doctor seems awesome.

I have just been threw that, I had a catheter for almost two weeks. I have a couple threads about my experience. I wasn't admitted, they inserted a foley catheter, and it was actually treated as a very quick routine procedure. They acted like people go all the time to the ER for catheters. It was just one person, in a room who did the catheter, in about 3 minutes or so. The nurse sent me to use the restroom first, then did the catheter, covered me up, and left me to "drain" for 30 minutes. The nurse then measured the urine that drained (the amount retained), hooked up my leg bag, gave me some quick instruction, then sent me on my way. The only time I was exposed was during the 3 minutes they took to insert it. For me, the only option they gave me was a foley catheter! Once you get one of these in, be prepared to deal with it until someone decides it is time to remove it, since you wont be able to remove it yourself. With a foley, what I would consider a minimum, make sure you get the bed bag (for sleeping!!!), leg bag, have extra surgical lubricant, strong tape, and maybe a under pad for your bed (in case urine leaks around the cath). I wont lie, it is a few minutes of slight embarrassment, but it could always be worse! A few months ago I found myself in the ICU having my butt wiped by nurses, who would never fully close the curtain to my room! You think you would never be able to handle the embarrassment of these sort of situations, until they happen, then you are so thankful for people out there willing to do a job like this!!! I dont have any experience with intermitent caths yet, but I am in the same boat with urine retention

Well, I found a new doctor (internal medicine), and I have a appointment scheduled with him tomorrow. But I live with my parents, they support me some financially, and they have "cut me off" with any financial help. Not only I cant afford copay for the dr, but I cant afford my medications. I already had to stop taking some of my meds. What hurts the most is that my parents think they are actually helping me, since they dont think I need to be going to doctors or taking all this medication. I guess I will be going without help for awhile

I just made a post about this, I am moving it to this thread I have noticed over the past couple weeks especially, that my movements are ever so slightly becoming shaky and more uncoordinated then ever. I also have trouble following things with my eyes. Every neurology visit he does tests these things, and it really shows me that my accuracy and coordination is off. The only test they did was a brain MRI that is normal. I wonder at what point does uncordination become more of something like ataxia? I wonder if it is sensory or cerebellar?

KJay, no other ER around, this hospital covers a fairly large area. Unfortunately, if I need to go to the er, I dont have much of a choice were to go.

I manage with magnesium and it doesn't affect my bp in any way. I guess we are all different. I take a minimal amount, and it helps me with twitches, motor tics, palpatations, and bowels. Just be warned, if you take to much of this stuff, it can have a potent laxative effect

Yes, but for me it is usually tempature related. I am most comfortable around 80. When it is not tempature then it is usually stress response or anxiety feeling

Just tried to get a appointment with the PCP, and was told that he feels that he doesn't need to see me. I let the nurse I talked to know that I am done with those doctors, they are a waste of my time! So now I just need to find all new doctors.

So I just got a call from the urologist, who said that he got the ER report, and that I wasn't experiencing any urology problems, that I should follow up with my PCP. I dont understand how my problems could not be any more urology related. I just dont understand why I keep getting tossed around and blown off. Someplace on my medical records must be some big red text that tells all doctors to ignore me. Is it possible of having some big label on my records that is hurting me? I can't get copies of them because they charge a outlandish fee per page. I keep getting days or short periods that I feel okay, but I generally feel like I am continually going downhill. (TMI warning) I had to get up from typing this reply to go change my cloths because without any warning my body decided to poop. Seriously, what the heck is happening with my body? Is this even normal dysautonomia related stuff?

No, no one suggested anything like that. I am going to try to make a appointment with someone to discuss this all

No, but I really need to see one. I had a small bowel bacterial overgrowth also. I have been on antibiotics for almost two weeks now, and I was told it cleared up my infections.