janelle

I'll check out those supplements, thankyou sallysblooms. I take a supplement/vitamin drink and i see a dietion now to help me eat regularly and im open to trying anything. Im going to a accupuncturist/chinease herbalist tonight, should be very helpful, i've never been to one before so im a bit nervous and excited. Julie, I get that runny nose and cold like symptoms when im tired as well then i rest and im a bit better, is that something that happens with us dysautonomics? My treatment always began in the ward with infusion nurses hooking me up, waiting for my reaction to stabelize, very runny nose, heavy chest, lots of sneezing and nose blowing and small blood pressure drop and a bit of coughing, then im good to sit it out for the arvo. i rest for a couple of days cause it takes alot out of me then i got slight improvement for about a week then down hill i went. I'd go through it again just to get a weeks worth of slight relief at the moment. I had a recent full blood count and it was ok, except my ferritin level(80) in normal limits but they had dropped two hundred points which is average for me as i cant hold onto iron stores. janelle

Thankyou ladies for replying, im so happy someone read my post. :-) Dani - I have Pandysautonomia, maybe something else going on, im getting worse not better, but i stay positive. Arizona girl - I had 6 months worth of treatment then he stopped the treatment cause it wasnt working as well as he wanted. I see the neurologist on wednesday next week and i'm going to ask him about my health status and any other treatments or experimental treatments worth trying. I'm very interested in getting my metabolic profile done, as i'm small but need to lose a bit of weight but its hard at the moment. Who would i see to go about getting one done?

Hi everyone, its been a while since i've been on,i have a question, I seem to be catching everything, and been getting ear, throat infections. Is my dysautonomia making me more suseptable to infections? does eveyone else have the same thing? Janelle..

Hi BellaMia, I'm sure you could measure yourself for an off the shelf pair, but if you need it customized then they should measure you. I went to a physiotherapist and she ordered the pair for me as i fell into the standard small size, they came in a black color so it is fashionable. I have a hard time getting them on as I'm a bit weak but my neuro suggested washing up gloves to get them on and so far so good. They make a difference, i can stand a bit longer with them on, so I'm happy. Janelle : )

Hi I'm from Melbourne...

Hi, I think i have it, but i think they call it differant things my label is pandysautonomia but it has many differant labels i've noticed in research articals. I'm on my 5th month of treatment with ivig and have gotten a small benefit from it after my 4th session, but i notice fluctuating slight improvement between sessions. I'm interested to know your journey,do you have your story posted, it's nice to know others are out there. pandygirl

I did have a lawyer through my long-term disability insurer, but the lawyer said I pretty much had done all the work myself and that I did a good job of it. It did help that I'd been to Mayo and been diagnosed at a well-known health care facility. But the mayo neurologist doesn't help folks get SSDI. I have a great GP who actually filled out the paperwork. She is NOT a POTS specialist, but wanted to coordinate my care and help me in any way she could. These are the additional factors that helped me get approved: - Visits to multiple specialists over a couple of years while I was trying to get diagnosed. I included all of their office notes because they all accurately corroborated my symptoms. Also, the judge said that when she read all of these doc's notes, it was very evident that I was a compliant, believable patient. - I kept a personal diary of my symptoms for nearly 2 years, as well as a diary of all my dr's appointments and phonecalls. All of this was submitted to SSDI (over 30 pages) - I started volunteering at my husband's school and kept a diary of what I was able to do, how often I needed to rest, how I felt during/after, was I able to transport myself, etc. This showed that I was trying to function to the maximum of my ability. You don't have to do this, but it was helpful for me. - I submitted several articles written by Mayo dr's or Dr. Grubb documenting the affect POTS has on our quality of life and our ability to work. These really helped the judge see how I felt every day. - I included a 2-page document titled "A Day in My Life" in which I described how I live a day with POTS. I start with how I feel when I first wake up and chronologically list my daily activities until I go to bed (and I even explain how POTS affects my sleep). I try to explain my level of function in simple terms so that if the reader had no understanding of POTS, they would come away with an understanding of how it affects our day-to-day abilities. I also update this and submit it each time I'm getting re-evaluated for my long-term disability. It has become the most helpful tool to explain my functional ability. I submitted probably 200+ pages of dr's notes, tests, hospital visits, personal records, scholarly articles, etc. The judge read all of these prior to the hearing, and approved me immediately. Let me emphasize, you CANNOT have enough documentation. Try to include objective data (dr's records, tests proving your diagnosis, scholarly articles) and subjective data (detailed personal descriptions of your disabilities). That way, those who evaluate your case will have proof of your diagnosis and a real understanding of how it affects you. There are many great threads on this forum from others who successfully won SSDI with POTS. It was hard work getting together all this proof of my disability, but it was worth it! The only reason I had to have a hearing was because during the first two appeals, the long-term disability company never sent all of my records. When I was assigned a hearing, the lawyer helped make sure all of my records were sent in. Hi, What articles from mayo did you submit? I'd love a link or point in the right direction as to get access to them so i could print and submit with my claim, it would help a great deal also for my family to read. Thanks

Yes, i have it. Never heard of it being genetic though, it starts as an acute or subacute onset with a monophasic phase then supposedly spontaneous or mostly incomplete recovery. They say it is autoimmune or idiopathic i think. I have had IVIG which is what they give and it is most beneficial i think in the early phase of illness, my therapy started after 19 months of onset, but it hasn't worked as well as hoped but i think it has a little. What are your symptoms? How long have you had it? Are they giving you any therapy? Pandygirl

Hi Erika, Hang in there and don't doubt yourself, you know what you feel and they are just being ridiculous about it all, no testing and saying you need a psychological assessments, Ha, laughable. You need medical expertise and fast, you know that you feel somethings not right, don't let them tell you how your feeling, stay strong or have someone speak on your behalf if needed for times of slurred speech or fatigue, zone outs you know when. My first encounter with a neurologist was awful, he suggested i had conversion disorder which my mum sitting beside me( she's a psychologist by the way) knew what he was getting at and demanded politely that tests be done to eliminate any medical possibility's, she knew i was not psychotic, a little depressed (who wouldn't) but no issues like conversion. Once he saw the results from my tests he said " Well you are sick aren't you and the tests confirmed an abnormality, I'll refer you to the expert on POTS". I so wanted to shove it in his face but i controlled myself and thought he is already feeling embarrassed, i got him back anyway, no words needed. After that, i saw a wonderful neuro that i still have now and i think he is brilliant , he used to work at the Mayo in Cleavland but now he's in Australia, lucky me. I am young only 27, married and I have 4 kids two special needs. I know when it seems that things can't get worse i learn another way to cope, i fully believe you can too. As far as mobility goes it's soooo hard. Was on crutches at fist because they thought it was my pelvic instability/hips dislocating as i walked, i was weak they gave me crutches and a neck brace, then recommended i see a neuro immediately after i couldn't even hold myself up. Now I have a wheelchair and a newly bought scooter, for the times when my brain is working or close enough LOL it gives me a little bit more freedom, but i always need supervision, I've been found many times unconscious on the floor with the kids locked in the house, but that doesn't happen anymore because i have someone with me always. I can walk now a little around the house from chair to chair and lay on the floor or in bed lots too. Take things day by day and you'll all get through it easier. Message me if you want to, I'm happy to answer any questions it's so great to finally find someone that has what i have, it is rare so i believe.. Hang in there Pandygirl xxx

Forgot to mention that a spinal tap is a great idea for knowing whats going on inside you body as it's all important, mine showed increased protein and 2 cells and some other stuff I'm not sure of. When i had a spinal tap i was hospitalized for 10 days because i reacted badly, i had the autonomic instability worse than i ever had, a feeling in my head i cant describe the pain was excruciating and i have hyper reflexes, extreme weakness and non reactive pupils to light, they did neurological exams on me every two hours even through the night when i was there. It was worth all the pain though because it wasn't for nothing and i had an abnormality to show so i could get the IVIG Therapy, maybe they will give it to you because you've gotten to hospital early enough, it may work for you, i feel like they are too late for me and it should have been done sooner. Janelle

Hi Erika I have pandysautonomia and am exactly like you are discribing, it's just horrible. i have had two sessions of IVIG and I'm not better yet, guessing it takes time but i only have one more dose of treatment next month and then they stop it if it's not working, I've had pandysautonomia for 20 months now. Hope they find answers and get you feeling better my thoughts are with you. Hugs. Janellexo

I was told they are telangictasias and its a part of HHT (hereditary hemorrhagic telangictasia's or another name is osler weber rendu syndrome, not a part of dysautonomia, but I'm thinking both our cases are exactly like a form of Elers danlos, i am hypermobile and have unstable hip problems. my mum has bad lungs,epileptic and has had two stokes but has recovered with time. Just wondering another cause for the telangictasia or blood vessel ruptures, it got worse when i had my 4th baby and so did my health in general it started at 3 month pregnant and even worse after delivery.

Hi, I'm new. I was looking in the forum to find others with what i have and hopefully receive some opinions. I have tiny red pin prick spots on my body here and there, i have pandysautonomia and HHT among other things my mum has HHT and a lot of other things as well her list is huge but is slightly different to mine as far as the autonomic stuff goes, but i am questioning if they have misdiagnosed us. I have fluctuating blood pressure, bradycardia, tachycardia, pins and needles in my extremities and scalp and I'm extreamly weak and require a wheelchair for any walking past 20meters, my heart rate fluctuates on a beat to beat basis, it raises on standing , my skin is mostly cold, twitchy muscles and cramps, aching body, i feel heat intolerant and cold intolerant never quite right with themps, cant exercise and i get lots of pre-syncope and faint on occasion, nausea, constipation, headaches and sweating abnormalities, cognitive problems at times, cant concentrate, vision problems and the list goes on. I was told by one doc it was in my head then i saw another neurologist who is great. ( my mum is a Phycologist too and she knew it wasn't, she did say i my be a little depressed but it's an after effect of my disability) I had a TTT done it was positive. i had tachy while supine but on tilt my heart rate went over 156bpm and fell low suddenly i only lasted 1.5 mins, then i passed out cold. The QSART was abnormal showing a patchy distribution. the first letter he sent was results of a severe disturbance of orthostatic tolerance and fit the criteria of pots and a neuropathic pots seems likely. Lumber puncture came back with raised protein and a couple of white blood cells, he said its non specific but he'd prefer not to see any cells in spinal fluid, he told me i have an autoimmune reaction happening and a peripheral neuropathy and pandysautonomia which is heard of but not common. He said i need beta blockers(propranolol) to put a lid on the heart rate and do ivig therapy both are not working. I have had two doses a month apart but i don't feel better at all. Has anyone had IVIG therapy? because it hasn't worked i wonder what they'll do next, the doc said to me it would be a long road and he wont answer my question if this is permanent or not as i've had this for over 19months already. Pandygirl

Hi, Im new to the forum this is my first time replying so i hope i get it right. I couldn't help but notice the discussion on ivig therapy, I have just completed my second course of ivig today, it dosn't seem to be helping me at all and i'm worried what will happen next, i have Pandysautonomia. Has anyone else had ivig or pandysautonomia?