What do you guys think it is or what test can be done to found out what it is ?

[chasingitaly9522]

I don't know whats worse being sick all your life. Or seeing countless of doctors only for them to send you to the ER without any results. My story begins at age six. I experienced nightly extreme pain in my legs which would cause me to scream until I got so tired and fell asleep. Nothing soothed it nothing helped. Doctors were sought out only to be told it was "growing pains" and everything would be okay as I grew more. It was the hope that was instilled in me that allowed me to believe it would lessen as I got older. But it only got worse. I continued going through the nightly leg pain that would last past the night and into days. It was inescapable. Along with that I was known as the "sick kid" in my family always sick with some kind of extreme GI issues causing excruciating pain in my abdomen or vomiting. My mother took me to a pediatrician and the doctor tested me for celiac which I was negative among other things including thyroid. Then in 2010 I was diagnosed with Hashimoto's Toxcosis Disease that at the time was in early stages and they denied treatment until it developed into Hypo thyroid. As I got older my symptoms became more debilitating. Sweating and my body is ice cold. Feeling sick all the time. My child hood was stripped from me because of my illnesses. As that continued by the age of 14 I became tachycardic. Where doctors would send me to the ER suggesting maybe a heart attack or something of heart disease. But the episode subsided once I arrived at the hospital leaving doctors puzzled.I got older and tried to involve myself in sports. We would play but something happened where I'd fall allot on my knees and my brain didn't make sense of the instructions that were needed to be completed by me. I would trip and fall allot causing injuries to my knees. As college started I thought maybe just maybe I would have a relief. But it was only the time that I would have a rude awakening that my ambitious nature would slowly lessen each incident that had occurred where my body didn't allow me to walk the halls anymore because I was too tired, and sending me in sleeping spells for hours and hours only to wake and not feel rested at all. Getting hot and sweating only to find that if I laid down on the floor I would feel cooler. Finally it got to a point I had to drop classes. Luckily I found job that allowed me to work from home. Then maybe a year into that I was surprised with new symptoms of wakening with blacked out vision for 10 minutes then once that cleared double vision. Then finally walking down the stairs was a possibility but only to be visited by a cooling sensation in my legs then tingling then falling afterwards because of the lack of stability my legs provided as one leg went numb. This was a every day occurrence occurring at 9am in the morning. Lasting no more then a few minutes. It was tolerable. The extreme fatigue was not. It would last for days along with infections. I couldn't escape this illness as it swallowed my youth whole. A year after that I was working and had this incredible chest pain where I thought I was having a heart attack I pressed my chest so tight applying pressure. The pain. It hurt with every breath I took. The next day I called my physican, letting them know of the incident and they automatically recommended me to go to the ER. So I went they said I tested positive for thyroid storm and said it was dangerous. But they sent me home because I felt fine. SO then maybe a few days later I was working again. Got ready to go to lunch as I was walking up the stairs the first stair it was like my brain said move your leg and my left leg went limp and I fell grabbing the rail only to plant myself on the stairs and not be able to move that leg for 30 minutes. Then after it subsided I told my mom and she said ok go to the urgent care. So we went. I failed my neuro exam because I had delayed responses in my legs and they wanted to send me to the ER again. I refused to go and instead I Went to my first neurologist. The neurologist ran EMG , AEEG had slowing of the brain intermittently in the delta and theta, since I had syncope and minor jerking / convulsions that happen rarely they thought maybe seizures. Those test were negative and the doctor relayed the news to tell me that he had no answers for me. My spirits were crushed. So on to the next we went and after examination the doctor found laxtivity  in my joints and said maybe I had EDS . Ehlers Danlos Syndrome. Test were performed such as a tilt table test and confirmed diagnosed a year ago of POTS. I was told to increase my diet of salt, increase fluid intake of 3 liters and then recumbent exercise. Sadly it only aggravated my symptoms. As I got older I grew sicker getting frequent infections, extreme fatigue and changing colors of the feet from white to purple . Then 2 months ago I had an infection that carried extreme feeling of cold. My place was 75 degrees and I was freezing. I was trapped in the Arctic. I tried hot shower and hot tea and nothing worked. Infact I couldn't feel the hot shower and notice my body turning red but my brain didn't register the temperature. I knew something was wrong. I started not being able to feel pain and temperature. But was given a small blessing for my  heart and blood pressure changed to normal. And fatigue was no longer there. Sadly the numbness increased and started affected different parts of my body. My entire right arm was gone for 30 minutes. Then it affected my two fingers in my right hand. And then my legs the numbness had started climbing from my toes. I carried on to a superior hospital Cleveland Clinic and the doctors tested me for neurogenerative diseases and rare cancers only to find no results. They also tested thyroid and though I was never treated the thyroid was gone it never developed into Hypo thyroid , it just disappeared.  Along with autonomic testing to find no results. The pain was fixed by neurotin. However the numbness is now creating muscle weakness where its hard to move my legs during the episode and is only climbing up to my hips very episodic. I have gone to a massage before and had hot stone treatment and couldn’t feel it where the numbness attacked my limbs my legs and right arm I couldn’t feel the heat but I could feel it on my back. The numbness happens pretty much daily. And my legs are affected daily and they just feel heavy then go numb. It can stay at my feet or rise up to my hips. Not only that but It affects my two fingers as well and sometimes its hard to move my fingers. same heavy feeling and with numbness plagues them. Doctors say this is a making of POTS but Ive passed Stress Test, And All autonomic testing recently and no longer bothered by high heart rate, and low blood pressure since after the infection those things were no longer issues but only made the numbness more intense and debilitating at times. Along with ringing of the ears and a bit of hair loss, and muscle stiffness and weakness episodically  

[SassyLassie]

Hello~I am so sorry that the doctors have not been able to help you. You have done everything that I would have recommended. Did the neurologist even mention MS or fibromyalgia, some of your symptoms actually point to those two illnesses.

Since you have tried every thing else, I suggest seeing a chiropractor. You may have many misplaced vertebrae pressing on certain nerves and if this is the case, this could contribute to a lot of your problems. He/she will take some x-rays, go over them and then adjust you accordingly. Some folks start to feel better just after a few treatments, it varies with each patient.

Also, I would start taking a good, high potency "B" complex along with extra B1 and B 12. A good multi-vitamin is a must as well.

I hope you start to get the help you are looking for. God bless you.