janelle Posted February 26, 2010 Report Share Posted February 26, 2010 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 Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted February 26, 2010 Report Share Posted February 26, 2010 PandyGirl,I was just curious as to if anyone has been able to tell you what the tine red pin prick spots are? I have those too and I have always wondered what they are!KC Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted February 26, 2010 Report Share Posted February 26, 2010 PandyGirl,I was just curious as to if anyone has been able to tell you what the tine red pin prick spots are? I have those too and I have always wondered what they are!KCThey are called Petechia. I get them too especially when there has been too much pressure on a certain area. (ie - tight jeans give me them across my thighs or a too heavy bag gives them to me on my shoulders. http://en.wikipedia.org/wiki/PetechiaSara Quote Link to comment Share on other sites More sharing options...
janelle Posted February 26, 2010 Author Report Share Posted February 26, 2010 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. Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 27, 2010 Report Share Posted February 27, 2010 Hi Pandygirl-Welcome! Pandysautonomia is a new term to me. I have read quite a bit about it and it appears to be very similar to what many here experience. The major difference is the etiology with the ganglionic antibodies, etc. I assume you've had this tested and confirmed. If so, it seems like you have a decent chance of improvement with the IVIG. Your autonomic symptoms are autoimmune in nature & IVIG can be very helpful to some with pandysautonomia. I'm sure you've done oodles of research, but here is an article I came across:http://www.ncbi.nlm.nih.gov/pmc/articles/P...c00005-0099.pdfIt seems VERY helpful to some & not so much to others... My guess is the folks who were NOT helped also have other causal factors, like connective tissue disease, etc.Others here have had IVIG treatment for their autonomic symptoms, not sure if they tested positive for the ganglionic antibodies. Also not sure if it was helpful. IVIG treatment is something my docs are considering. I have resisted because of the negative side effects from the treatment. (I'm just a baby :-) In my case, my immunoglobulins are very low, specifically IgG, and sometimes IgA. I struggle to keep my IgG above 500. (Normal 750-1,500) I just had it tested again & will hear back next week re. my doctor's recommendations. I'm very curious to see what you decide & if it helps. Keep us posted. I'm most definitely pulling for you!Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted September 7, 2012 Report Share Posted September 7, 2012 HI, I am 37. I have just been diagnosed with pandysautonomia after being told for the last three years it was POTS. I am unclear about the distinctions between both and finding any research I do really confusing. The doctor tells me I don't have evidence of autoimmune problems, so I don't think I can try IVIG.I have vision problems, dry mouth, othostatic intolerance (and a rate-drop pacemaker after asystole on the TTT) a barely functioning detrusor muscle, neurogenic bladder and recently more episodes of gastro involvement (pseudo obstructions and painful distension) and numb/ tingly hands and feet. He said it is progressive but i can't find any information about what that really means for me... he also said he has nothing to offer in terms of treatment. What will happen to me next? Will I become entirely incontinent? What about breathing? I have so many questions! Do any of you have any ideas for me? I feel like I have been set adrift in a sea in a foreign land. What is the prognosis for this? All I could find on the net was prognosis information for auto-immune pandysautonomia... I don't know where to look next.Hopeful Rachel Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 7, 2012 Report Share Posted September 7, 2012 Rachel, anytime I see someone say they can't control their bladder, I think of Chiari malformation or a spinal issue such as stenosis or syringemelia(?sp). They all can affect how the bowels/bladder function. Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted September 8, 2012 Report Share Posted September 8, 2012 Thanks Sue, I will look into those and see if that info can help. So good to have this forum! Quote Link to comment Share on other sites More sharing options...
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