I really wished i could explain, in detail, the misery i have gone through the past 6 or more yrs., but there is just no way to do that. It just seems impossible, with all of the symptoms that I am having.
I have seen so many different doctors...mostly NL, but haven seen a couple of Endocrinologists, a Rheumatologist and a couple Orthopedic Surgeons and i do have a bunch of diagnosis's, but NOT ANY ANSWERS...TO what I have that is progressing.
I WISH, I KNEW...WHAT THE ANSWER WAS...WHY THIS IS HAPPENING TO ME...
Was woke up 2 times tonight w/ EXTREME MUSCLE RIGIDITY...they were so tight, I couldn't bend back straight...They were LOCKED...my limbs felt like tree branches...immovable or bendable! ANY area that was bent while sleeping...was stuck and IT hurt like u know what...UGHHH! Why did it hurt so bad to bend them back?
KNEES, SHOULDERS AND ELBOWS...and they were extremely SORE...deep inside too. :/ :P
And every day this week...my eyes have hurt and i know, it felt vascular in nature...like a MIGRAINE!. B4 i went to sleep last night...i was having pain on my left TEMPLE...REAL BAD NAUSEA, TREMORS in chest...and what felt like spasms in my whole body, bottled anger of some sort held tight in which, made me feel incognitive.
MY <3 was pumping hard, hurting exactly on the AVM area(Arterio-Venous Malformation.) Feels like someone has literally PULLED MY HAIR...and it stays so SORE and like someone has their hand, over it. They stated on the report...i had something called an "Empty Sella"and that is in the same place...as the AVM,...SO, WHY DOES IT HURT...IN THAT PARTICULAR SPOT?
The MIGRAINE was so strange...it was different than other times...my eyes hurt from ANY light SOURCE...EVEN, MY COMPUTER CHARGE LIGHT! I was seeing some kind of rays of light too...COMING FROM THE TV. When i would try to look at it...it would hurt every time that i did. I hurt in places...like the forehead, but...just between the eyes and a spot on the very top of my HEAD...where i was hit ha-rd, in a car accident...and of course, my instinct...is telling me that this is PROGRESSING...AND FAST, BUT THERE ARE SO MANY DIFFERENT THINGS THAT THIS COUD BE...THAT I AM AFRAID IT COULD BE TOO LATE, WHEN THEY DO FIND IT.
OH, this DIZZINESS, NAUSEA, NECK PAIN...BACK PAIN AND INVOLUNTARY MUSCLE MOVEMENTS.(shoulder jerking forward)
My fingers are having CONTRACTURES--that's when muscles pull together and it hurts so bad. I have been having mine....in my fingers, both hands at the same time too. They look and feel like...they've been twisted by a a contortionist...WHICH, HURT LIKE UTTER H***
ALSO add...MEMORY LOSS to the mix. I feel LIKE A SCARECROW most of the time...SERIOUSLY.
WHEN, u add all of my symptoms up...what i listed, it is soooo scary, but my memory is so bad...i can't remember a lot of things to tell Docs, so they could help me...but it seems impossible to cover all of the ground...because it is so complex. (going to print this one...to make sure they have something to look at...and maybe, a clue to find the answer.)
IT is a horrible combo of symptoms, in which I need to add some more that i remembered...extreme NIGHT SWEATS, BURNING SKIN, MUSCLE CRAMPS, BREATHING....AHHHH ETC.
When, am i ever going to have a normal life again?...so TIRED of being sick. GOD...when, does this end...i pray it will be soon. :P
IN MY MID-BACK...U CAN SEE THE AREA OF WHITE MY NEUROLOGIST WAS CONCERNED @. HE TOLD ME, "IT IS OUT OF MY AREA OF EXPERTISE". THEN, HE LABELED IT DISK HERNIATIONS.
SO, what I WANT TO KNOW...is WHAT IT IS??...IT COULD BE THE ANSWER TO WHY I AM SO NUMB, IN ALL OF MY EXTREMITIES. I WAS HIT BY AN ESI (EPIDURAL STEROID INJECTION) back in Dec.'06. THIS IS WHEN, I BECAME NUMB IN ALL OF MY EXTREMITIES AND now...I KNOW...IT SEEMS TO BE ASCENDING IN NATURE, BECAUSE AFTER ALL OF THIS TIME...THE TOP OF MY FEET, THE OUTSIDES OF MY SHINS AND MY FACE HAS BEEN ADDED TO BEING NUMB!
SOMETHING HAS TO BE DONE...AND I FEEL, IF I DON'T DO IT NOW...I MIGHT LOSE THE USE OF EVERYTHING.(my bladder has incontinence...but, does it make sense that it is worse at sometimes...more, than others?)
I WANTED TO ADD, FOR THOSE OF U...WHO HASN'T HEARD THE STORY, A PAIN CLINIC GAVE ME A SERIES OF THREE(3) ESI'S AND THE LAST ONE MADE ME JUMP ON THE TABLE LIKE I HAD BEEN STRUCK BY LIGHTENING...OR REVIVED BY PADDLES OR SOMETHING. I THINK, THEY CALL IT A WET TAP, BUT I THINK SOMETHING WAS DONE...TO CAUSE AN INFECTION EVEN OF THE SPINAL CORD. WELL, IT COULD BE POSSIBLE...AND I STILL BE SURVIVING. I AM TOUGHER, THAN MOST PEOPLE GIVE ME CREDIT FOR. THEY HAVE NO IDEA OF HOW MUCH PAIN...I AM ACTUALLY IN. :'(
IT IS VERY HARD...ESPECIALLY, BECAUSE I DON'T LOOK SICK...OR SO, PEOPLE TELL ME...BUT, THEY CAN'T SEE WHAT I FEEL LIKE ON THE INSIDE....OR KNOW, JUST HOW MUCH PAIN I CAN REALLY TAKE.
GOD....HAS GOT THROUGH IT...I KNOW. :D
BELOW...ARE SOME OTHER SYMPTOMS I HAD ALREADY WRITTEN HERE...TRYING TO COME TO A CONCLUSION...WHICH, SEEMS UTTERLY IMPOSSIBLE...I THINK. :/
The numbness is moving further on my face...and the weakness is , and ge, and have received many different diagnosis', but don't have one solid diagnosis...it is many different ones. I know, there is one answer to all of it and I need an answer desperately.
I have a list of symptoms that plague me on a daily basis. First of all, the muscle cramps, spasms, tremors and fascilations are most of what rides me all day, besides the burning,aching and debilitated feeling i have. I feel like i keep an internal fever and get horrible "night sweats", memory problems are horrible and the brain fog, B12 & Vit.D deficiencies...i think because i have to take supplements religiously or levels will drop and since i stay SO tired...something is wrong.
My Cortisol levels were low (1)..taking Hydrocortisone and now,it is 5.8, but Thyroid is enlarged and so many lymph nodes and i have cysts everywhere..even in my breasts. I have trouble breathing and swallowing, chest congestion, post-nasal drip, i am becoming incognitive at times and at moments...feel like i need to escape somewhere because so distraught and depression is setting in, extreme muscle pain with spasms and cramps, can't stand or sit for 5 min...become numb with terrible pin/needles all up in my hip even, in all muscles areas. I really believe it's MS, but hasn't been confirmed, but if i get accupuncture and the shot of B-12...i will be able to walk, sit and do for a whole day and sometimes two days. A couple of Docs said my pain could be from my neck surgery or where i was hit, in the back with and epidural spinal injections(ESI's). When, i was hit my hands and feet were made numb and have continued to stay that way. I know, i am a complicated case, even my primary doc says that i am.
I am a very driven person, young and artistic...and was a professional vocalist, at one time. I worked 3yrs. singing and dancing in Nashville, at Opryland...and just need my health back. It has been hard on my family because i know, they are having a hard time understanding what is happening to me too.
I would love to be able to find out exactly what i have, because i have been diagnosed with all of these: DDD OF CERVICAL, LUMBAR & HIP/JOINT,SPONDYLOSIS, DISK HERNIATIONS OF T8-T11 W/HYPERTROPHY(NL told me at first that he didn't know what it was and it was out of his area of expertise), VA(VENOUS ANOMALLY), CM(CHIARI MALFORMATION), ADDISON'S DISEASE(although new Endo unsure of that diagnosis), TEMPORAL ARTERITIS(was dx'd by an online doc, after I was having severe symptoms that scared me), ENDOMETRIOSIS(had a bad case, my uterus was attached to my back or colon) AND ALLERGIES....ETC. (Right now, i am dealing with a dry socket and an infection in the tooth extraction area and this makes for the second dry socket, i have had....very painful.)
I don't know which one of these is causing me to be stuck in bed? The dry socket isn't what has cause me to be in bed...all this time, but it sure has made the past week, heck. I surely want whatever is wrong with me fixed or i do hope that it can or will be. I have been sick for so long and my family needs me.I have been to many Docs, but not well yet and it has been 6yrs or more. HELP!
paresthesia (have gone completely paralyzed on the whole left side of my body- called 911)
tinttinous (ear ringing)
chemical sensitivity(some allergies with cleaning scents and purfumes-cause headaches)
pins & needles/tingling
chest infection w/cough and congestion(PCP says chronic bronchitis)
aching muscles/body aches
food intollerances(become lactose intollerant)
sore throat(off and on)
low body temperature(97.1)
depression(from all of the pain)
cold hands and feet
feeling hot-internal fever(same as i did with the Endometriosis and then, i would faint)
depth perception off
difficulty swallowing(liquid soups/water even)
lump in the throat
swollen lymph nodes
cysts(everywhere-2 in each breast)
fractured rib(don't even know how i got it)
head pains/pressure(some pains can be sharp)
condyle bone in jaw deteriorating
tiny pestules(mostly on upper arms/thighs/
night sweats-although not just at night)
hip pain(Doc says bursitis-maybe?)
...and so many...many more problems/pain. Did I mention a bad memory?
THIS EXPLAINS TO U GUYS...JUST WHAT THIS DISEASE IS CAPABLE OF. IT IS NO WONDER, I AM IN AGONY. SO MANY ARE...AND YES, IT IS HARD, BUT LIFE GOES ON AND WE ALL HAVE TO MAKE THE BEST OF WHAT WE GOT.
I REMEMBER, WHEN LIFE WAS GOOD...AND I WAS SO HEALTHY. I WAS ABLE...AND COULD DO JUST @ ANYTHING. DR. HOUSE...WHERE ARE U?
IF, WE HAD MORE GOOD DOCS LIKE U...THEN, WE WOULD BE FIXED AND COULD LIVE OUR NORMAL PRODUCTIVE LIVES...LIKE WE ALL WANT...:)
I KNOW, THE LORD IS RESPONSIBLE FOR WHEN I DO HAVE A GOOD DAY AND I THANK HIM...FOR IT. I REALLY DO :)
LINK FOR CHRONIC FATIGUE SYNDROME. CFS OR OTHERWISE KNOWN AS...ME.
I HAVE SO MANY SYMPTOMS THAT DOCS CAN'T FIGURE THE ACTUAL STAMP, OF WHAT IT IS. I HAVE BEEN DIAGNOSED WITH MANY THINGS, BUT NOT JUST ONE EXPLAINS ALL OF THIS. I AM DESPERATE AND NEED SOMEONE TO TELL ME WHAT I GOT...AND TREAT IT.
WHAT IS SO BAD....IS THAT I AM DOING EVERYTHING BACKWARDS...MY WORDS, MY MEANINGS...MY MEMORIES ARE GONE. I FEEL LIKE "THE SCARECROW".
I CAN SAY SOMETHING...AND IN SECONDS, IT IS GONE. I CAN NOT RETAIN THINGS...REMEMBER. I HAVE INVOLUNTARY MUSCLE MOVEMENTS...AND HAVE AWFUL MUSCLE CONTRACTURES, IN MY HANDS AND FEET. THEY FEEL LIKE THEY ARE EVERYWHERE.
BELOW, A FRIEND SENT ME AN OPINION, BUT I HAVE OPINIONS RANGING FROM LYME DISEASE...TO THE KITCHEN SINK AND NEED SO MUCH WHAT THIS IS. I WANT A LABEL PUT ON IT, SO MAYBE...I CAN SEE THE LIGHT OF DAY AGAIN. :P
Someone sent this to me, from reading up on my symptoms.
I'm going to keep reading up on leg pain, but so far your symptoms seem pretty consistent with a back injury (specifically a herniated lumbar disc). To that end, I have a few more questions for you.
1. If you have someone at home to try this with, sit on the floor with your back up against a wall and your legs straight out in front of you. Have someone gently pick up one of your legs and lift it up as far as he/she can without hurting you and let me know what happens. (or if a doctor has already tried this one, tell me what happened)
I THINK IT IS GUILLAIN BARR'E. http://en.wikipedia.org/wiki/Guillain%E2%80%93Barr%C3%A9_syndrome
BUT...THEN AGAIN, IT COULD BE...TOXIC MOLD, MS, LYME, TEMPORAL LOBE EPILEPSY...AMONGST OTHER THINGS, BUT TRYING TO KEEP POSITIVE...AND LETTING GOD HAVE IT.
GOD BLESS ALWAYS...<3 Karen