tlserenity

I have heard of cerebellar ataxis - referred to it being the result of 'long term compression of the cerebellum area or damage done post surgery on the cerebellum'. (Mary - Do you have major balance issues as i do???) Terry Lynne

Hi Babette - Maxine is a wealth of knowledge! (thank you Maxine!) I 'happened' on POT's by way of Chiari I Malformation, Retroflexed Odontoid and Kyphosis in my neck. It is suspected that I have EDS - although it has not been confirmed. In the past 14 months I have had 3 surgeries - the first one was a failure and left me worse off than before the surgery. The other two stopped the progression of the Chiari symptoms and strengthened my neck - however - as Maxine stated - surgery is not a cure - I live daily with a whole myriad of neurological and physical problems. I have had to learn to not bend my head back or forward - My Physical Therapist created range of motion exercises around the movements that I cannot make. I wear a hard collar in the car - and a soft collar at home when I am alone - as I am prone to seizures if i move my head wrong. You will find that most doctors haven't got a clue about these illnesses - and you will find many who say they do - that really DO NOT. It is best to stick with the Specialists in this area - ones that have studied it and treated it for years - otherwise you will be running into brick walls and/or be treated as if your body is a cookie cutter image of the last person that they treated when that is rarely the case. It does sound from your symptoms like you may have Chiari and Instability Issues. (BUT that is only my opinion - based on the symptoms that I have had) Terry Lynne

Hi Susan - I have had several major surgeries over the past years - while I didn't know I had POT's - I knew I had Addison's and the hospital was made aware of this and took special precautions before, during and after the actual surgery with my BP. So just be sure that they are aware of your condition - I have learned the hard way - that just because your doctor is aware - doesn't mean that it makes it on your chart - we have to make sure that our conditions are known to the nurses and to the anesthesiologist - I have to be honest - recovery periods have always been longer than normal but I have other conditions that complicate matters. But I am sure that if you listen to your doctors - and follow instructions - you will do just fine!! Best of luck!! Terry Lynne

I know this topic is old - But i found it very interesting - considering I was diagnosed for 17 years ago with Fibromyalgia and CFS until all of a sudden my Chiari I Malformation got (in my words) angry enough to be seen and then all of a sudden the fibro and CFS labels no longer fit and the Fibro doctor wouldn't even see me. While I am quite certain that Fibro DOES exist - i am also quite certain that i don't have it and that i never did. In the past year I have undergone three surgeries for Chiari and related problems - and after these - have been diagnosed with POT's secondary to to Chiari. and my doctor says I have had POT's all along - right with my Chiari - which I was born with. So yes - I am positive there is an overlap - with Chiari, Retroflexed odontoid and POT's After years of the frustration of doctors trying their hardest to fit my strange symptoms into fibro and CFS - NOW it is a releif to know it has always been Chiari and it's related illnesses and POT's. thanks for all the info posted here!!! Terry Lynne

My doctor recommended I get the capsule making system and make my own salt capsules. Of course I haven't done it yet. I am still just literally eating salt and salty foods. But I do have the website info for the little machine that builds the capsules. It looks pretty simple. I think it might be advertising for them if I post it on here - so if anyone is interested - I guess y'all could messsage me? It looks pretty easy to do - and he said some of his other patients have been using it. have a blessed day - Terry Lynne

Yes - having all these food allergies demands a rigorous eating scedule that i cannot stick to anymore - until summer of 08 I was a good weight for my height - now i am 15-20 lbs underweight - and am trying hard to bring it back it up - but it is really difficult when eating anything (like most of y'all) makes me so nauseated. It's been really tough having to up my salt intake for the POT's!! My energy levels always came from fruits. I was constantly eating them. My husband always said I ate like I ate like a wild animal - Fresh fruits, veggies, and meat. Pretty much in that order too! I will say it does wonders for the complexion!!! The only sweetner I use is honey - I find it not only adds sweetness - but if you use the locally grown stuff - it helps with allergies! (or I should say - it does with my seasonal allergies) What I miss the most is the tall glass of milk at bedtime! BTW - MERRY CHRISTMAS!!!!!

My Motto since June of 2008 is 'i miss ME'. Today is no different - I soooo understand where you are coming from - I always heard that we have to reinvent ourselves at different ages - I just never realized that my reinvention would be this young (well - 46) - And wouldn't actually include the "ME" I have always known. I am still searching - But I know there is a purpose for all of this. I too have the pain and numbness in my arms & hands - but mine comes from a different source. It truly is frustrating for our bodies to turn against us - to have the memories of what they can do - but no longer the abilities. Hold tight to your faith - the verse at the end of your signature truly puts it into a nutshell - (LOVE your screen name!!!) Our pain and trials in this life are building our mansions in Heaven - With prayers for your comfort - (((gentle Hugs))) TL

That sounds like one of my reactions to Dairy - I end up in the bathroom within an hour - and can't leave there for quite a while! That and my face swells up immediately - I ordered a baked potatoe with nothing on it at a well-known restaraunt - little did i know they put butter on the SKINS of them when they come out of the oven!! By the time i finished eating dinner - my eyes were swollen almost shut! It was crazy!! And I too cannot eat the artificial sweetners - I drink alot of water - and black coffee (cold so it doesn't take the rest of the appetite that I don't have to begin with!)

I had Endometrial cancer when I was 22 - thankfully I had already had two sons - I had to have my uterus removed - also thankfully that was the end of my cancer. Now I have POT's - to be honest - there are times i almost wish it was cancer again - then it could be removed from my body! But my thoughts when I read your post was this - Have you heard the story of being told to go into a room of crosses (representing of course our trials in life) and leave yours and choose any others in there in trade? As the story goes - all that go in and lift the weight of another's cross that they bear - will come out carrying the one they went in with. Because we are given the tools to carry the ones we are given. I have often thought of finding this story in print and sending it out to my family - ALL of our crosses that we carry are heavy - we are all given trials in this life - if we weren't there would be no reason for us to be here. I pray your family comes around and sees that you need/deserve their support. Just because our illness isn't clearly visible - doesn't make it any easier to carry.

Yep - I can tell when there are small amounts in the food i eat - My wrists and shoulders hurt like all get out within a very short time!

I am new to the forum. I was diagnosed about 3 wks ago with POT's secondary to Chiari I Malformation. I have had 3 major surgeries in the past year for the Chiari problems. The specialist said that I have more than likely had it all my life right with the other problems. About 6 years ago I was diagnosed as Celiac and allergic to Dairy and refined sugar. I am curious how common these food allergies are with POT's? Have a blessed day! Terry Lynne

I have this problem - the nutritionist that i went to see told me to get those 'meal in a can' shakes (so that i don't advertise for anyone!!) - and drink them 4 times a day so that i can get my nutrients - turns out she didn't hear me when i told her i am flat out allergic to dairy - so had to switch to the soy version - I still can't bring myself to drink them as she says to - I really prefer not to get so sick at my stomach - but I am trying! TL