WHAT PATH DO I CHOSE TO TAKE? DO I TAKE THE ONE LESS TRAVELED OR DO I CHOSE TO FOLLOW OTHERS AND MAKE THE SAME MISTAKES THAT THEY CHOSE TO MAKE? U CAN ONLY LIVE AND LEARN, IN THE PROCESS OF LIFE. HECK, MOST OF US HAVE LEARNED BY WATCHING OTHERS AND BY SEEING, THEIR ACTIONS OR RE-ACTIONS...WE CHOSE TO FOLLOW THAT BEHAVIOR OR SAY TO OURSELVES, "THAT IS NOT HOW, I WOULD HANDLE THAT SITUATION, BUT CAN U ACTUALLY, KNOW FOR SURE HOW U WILL REACT, IN A SITUATION...IF, U HAVE NEVER ACTUALLY BEEN, IN THAT SITUATION? only u know the answer to that.
GOD IS EVERYWHERE...U CAN'T MISS HIM..:D
THIS IS A REVISED POST, THAT I MADE RECENTLY TO SOMEONE ONLINE. WHO, BY THE WAY HAS ALSO, BEEN HAVINING SOME OF THE SAME SYMPTOMS THAT I HAVE. FOE A LONG TIME, I HAVE FELT THIS WAY. NOW, IT IS FAR WORSE...
SO, I THOUGHT I WOULD SHARE THIS WITH U GUYS...SO, U CAN GET A BIRD'S EYE VIEW OF MY EVERYDAY LIFE.
I KNOW, IT IS HARD TO UNDERSTAND, FOR SOME OF U, BUT IT SEEMS, THE PEOPLE THAT U WANT TO UNDERSTAND, JUST DON'T GET IT I MEAN, THEY ARE CONSIDERATE AND LOVING, BUT I THINK, THEY ARE JUST TIRED OF HEARING @ IT.
AS I LOOKED THROUGH WHAT I HAD WRITTEN...I WAS REMINDED OF WHAT U GUYS MUST THINK. I KNOW, IT IS HARD TO TAKE IN...I CAN'T FATHOM IT SOMETIMES, MYSELF.
WHAT I AM TRYING TO SAY, IS THAT I MEAN, IT SOUNDS ALMOST IMPOSSIBLE FOR SOMEONE TO ACTUALLY BE GOING THROUGH ALL OF THIS AND HAVING SO MANY SYMPTOMS, BUT EVERYTHING THAT I SAY...IS REAL AND SADLY, IT IS TRUE.
IT IS SICKENING TO ME, JUST TO READ IT, BECAUSE I AM REMINDED OF HOW MY BROKEN LIFE MUST SEEM...TO U.
I DO KNOW, I AM BLESSED. YES, I FEEL TRULY BLESSED, BECAUSE MY LIFE HAS BEEN PUT INTO PERSPECTIVE, IN A SENSE. I UNDERSTAND HOW it is...THAT I SHOULD LIVE MY LIFE NOW...AND AM MOTIVATED MORE TO DO SO NOW THAT I HAVE A DIAGNOSIS.
I DON'T TAKE A SINGLE DAY FOR GRANTED NOW.:D
I GIVE ALL THE CREDIT, TO THE LORD AND THANK HIM, FOR GETTING ME TO WHERE I AM NOW...HAPPY ON THE INSIDE..
BELOW IS THE POST THAT I PULLED, OFF THE SITE. FOR THE REASON THAT I NEEDED TO UPDATE THAT I HAD FOUND A DIAGNOSIS.
FINALLY, AFTER ALL OF THESE YEARS OF JUST HAVING TO STAY IN BED...NOT BEING ABLE TO GO AND DO LIKE I USUALLY DID.
I HAD POSTED IT, IN THE FIRST PLACE BEING I WAS DESPERATELY SEEKING AN ANSWER TO WHY?...WHY WAS I HURTING SO BAD. WHY WAS IT THAT MY LEGS WERE BEING AFFECTED? I JUST WANTED AN ANSWER TO THE DEBILITATING SITUATION THAT I HAD BEEN PUT IN.
U WILL READ EXACTLY WHAT I FELT AND THE SOME OF THE HORRORS OF NOT GETTING TO SEE THE RIGHT DOC! IT REALLY MAKES A DIFFERENCE IN WHICH ONE THAT U SEE. SO, MY ADVICE WOULD BE THAT TO KNOW UR BODY AND SEEK TO FIND THE AREA OF THE ROOT OF THE PROBLEM, INSTEAD OF TREATING THE SYMPTOMS.
I WAS TRYING TO FIND ANSWERS, BUT NOW THAT I HAVE THEM, I JUST WANT TO SHARE AND TELL EVERYONE JUST HOW BAD IT WAS...AND STILL IS. IT WILL TAKE A WHILE, I AM SURE. IT HAS TAKEN SO MUCH FROM ME...THE TIME WITH MY CHILDREN IS SOMETHING THAT I WILL NEVER GET BACK. IT HAS ROBBED MY LIFE OF SO MUCH THAT I WANT OTHERS TO BE AWARE OF HOW SOMETHING CAN SNEAK UP ON U....AND HIT U B4 U KNOW IT.
NOW, WHAT I AM GOING THROUGH...IS VERY DIFFICULT FOR ME AND IF ANYONE KNOWS HOW TO RAISE SOMEONES CORTISOL LEVEL, ACTH AND PROLACTIN...PLEASE GET IN TOUCH WITH ME. I WOULD APPRECIATE IT, SO MUCH.:D
THE POST BELOW IS THE TRUTH AND WAS POSTED TO A SITE THAT WAS LIKE A BLOG OF PEOPLE WHO WERE ONES, WHO CAME THE CLOSEST TO ANYONE DEALING WITH WHAT I WAS GOING THROUGH.
I MUST SAY, WHEN I WAS READING THROUGH IT, I FOUND SOME GRAMMATICAL ERRORS AND HAD TO CORRECT THOSE, BUT NEVER CHANGED THE MEANING. IF, I DID ADD ANYTHING AND CONFUSE U...I AM SORRY, BUT MY MIND ISN'T WORKING AT OPTIMAL LEVEL RIGHT NOW. I AM NUMB...AND I DON'T LIKE THAT!
I WROTE EVERYTHING....WHILE UNDER DURESS AND FRUSTRATION,,,SO, I AM SURE U WILL UNDERSTAND MORE, IF U WERE IN MY SHOES, BUT TRUST ME...U WOULDN'T WANT TO BE THERE FOR MY SOCKS..:P
AT THE END, I AM TELLING @ THE ANSWER THAT WAS FOUND OF ADDISON'S DISEASE. I WANTED TO TRY AND EXPLAIN EVERYTHING, JUST A LITTLE BIT BETTER, THAN I DID THE OTHER DAY.
AFTER SEEING...ALL OF MY PAIN SPLASHED UPON A PAGE...IT WAKES U UP!~sigh~
POSTED ON A BLOG...SOMEWHERE:
Hello guys..I thought, I would give u an update, on what is going on with me. I have been going through.so much. Jinkies, u hit that nail on the head..so to speak with the nausea issue that u discuss.
All of u guys, posted exactly EVERYTHING that I CAN relate to really...and I feel ur misery. think, I have found "home"...here with u guys.:)
IT is utter "H", really on ALL of us, when we have to search or "research"...for our own answers. These days, u have to because there are so many different syndrome or diseases("disastors"), syndromes,etc.
Sometimes, IT just seems unfair of the abuse that we have to take, on TOP of ALL the pain we experience..but that is life. "We can't have all the things we want all of the time, but we can have all the things we want.. some of the time." I don't know if that is a real saying, but it makes sense..2 me..hehe.:))<3
Jinkies, u listed every single one of my complaints, in ur first post..
"It's the same old story...numbness, tingling, pain, twitches, fatigue, GI issues, heat intolerance, alcohol intolerance, gait change, balance issues, memory issues, hyper reflexes in my legs (and then randomly yesterday, no reflexes in my arms) etc."
So, here's my story, as brief, as I can tell it to u.:)
@ those hyer reflexes, in ur legs....I really FEEL u..u said it!...THAT'S the word..HYPER FLEX, because my legs, they kill me everyday with this aggravating pull and tightness. It is like I am continuously working out and I am laying in the bed. IT is likeThe pain is so dreadful and rides u all day,no matter what ur doing, but I don't have to explain that to u, for I am sure u do understand.
I do want to ask any of u, if ur knees give u any problems? Mine hurt mostly, just in the joints...over ALL of my body. My knees hurt, ALL of the time and have locked up a few times, to where I had to pull the leg straight. My fingers do weird things like straighten out funny. It feels like I can't move it, it has a mind of its own.
I thought, it was RA, for a while or Gout, but haven't got any positive testing yet, to back that up. I have been to one Rhuematologist and she explained that I had "myalgias", but Oh...ok, so that is suppose to be my answer, without even touching me?? How?
I am sorry. I just have lost so much faith, in the medical system, these days. I am just so frustrated, as u can tell. I feel, she looked at my 2" thick folder and thought.."Oh, here is another Hypochondriac of the day"..Well, u wonder if it it's really like that, especially when u aren't getting any answers. Some Docs, could care less. These days, ur lucky, if one sits 5 ft. in front of u. The ones that I have been getting here lately, seem afraid to even touch u.: {
Today, I had a feeling that was new, but there's not that many things that are a surprising to me anymore. It felt like the point, of a pair of sizzors...stuck into my calf and then, was pulled downward to my heel. YOWCH, I am so tired of PAIN and complaining, I was never a complainer, in my life, but now, I never know what to expect next...from day to day.
So please tell me that IF this, is "MS", I will be able to make it through all of it. I hope and pray that it does get better down the road. It will and only, because I have done the right things now, by researching to understand whatever this is. Maybe, I will have a better outcome. It is just that a diagnosis is better of an answer, than nothing or being in the dark...not knowing a thing.
Maybe, after getting dx'd and taking the right medication, it will make the difference. Fingers X, but then again...I don't want to be dx'd with MS,.I just want an answer.:(O
I had a surgery in my neck,(C5-C6)ACD&F spinal diskectomy, back in '06. So, I have been thinking most of this time, that the surgery was the whole problem here, but re-thinking that notion..now. I donno..it is complicated..I know that..
The Neurosurgen(NS) that did my surgery, won't see me anymore and I think, it is because everything started getting too complicated and I was having to go see him too much(saw him 9 out of 11 mos. the first yr.of surgery)...but, I knew there was something terribly wrong. I had the surgery in Feb. and had to go back to see him in May, all the way through Jan of the next year.
Due to my right arm/left arm/shoulder weakness and the bi-cep pain, with the addition of 4 herniated disks in the Thoracic part of my back, with Hypertrophy, I can barely do anything at all. I can't even use my arms to reach out, grasp hold of anything or feel the weight due to the parlysis. My arms will cramp up, when I reach out for something, if I hold it out for a few seconds. I am barely able to type this up, but I can move my fingers enough to get it out. My words most of the time are backward, for reason being my mind is doing everything backward. I can say that none of my upper body hurt like this, before the surgery, at all. Only, my neck hurt when I slept. It was the only problem that I had before my surgery.
I just know, this has been very hard on me and my family, with the trips. It is so hard riding for 4 hours or more, of the round trips. Then, u have to set in a lobby, for at least an hour...or more. After all of that...having to wait in their little room, until they come in to see u.
After, us making all of the trips we have, since seeing my Neurosurgen( one that did neck surgery) the first few times, he said that it was my C5 right then, yet he has done nothing to correct that problem. He said for sure that it WAS, the problem causing my bi-cep, to be in so much pain. Okay, Ah...in my mind, thinking, ("that is where he done my surgery?")...but, I did notice that, that theory went out the window and he never wanted to talk @ it again...hmmm, it is sure making me wonder what in the world is going on.:P
I don't want to seem to harp on the surgery, but that is probably the cause to all of my neck pain. When, he told me that, I figured he would get me to feeling better and not be in so much pain, but I never heard anything else @ it and since, I don't live exactly close to any Neurologists or Neurosurgens, I had to rely on trying to find someone that would help me find what it was that felt like it was killing me.
My quality of life just deminished and I started having all sorts of problems, after I received nerve blocks, for the pain. The did a series of three(3) on me and the last one was the doozie. I did fine, for the first two(2), then when the Doc. decided he was going through my Thoracic, instead of the Cervical, I felt a little apprehensive, but decided he must know what he is doing. Well, he didn't apparantly, because he struck something. I had what was called a "wet tap", THOSE are NOT fun. All, I know is that when he hit me, I jumped on the table like someone was reviving me with paddles. He immediately told me to sit up and began asking me questions. "Are your ears ringing?...Do you have heavy breathing? I mean, the guy seemed freaked, so I was getting there, as well. They put me into a room and closely....and I mean closely monitored me. He had asked me how I felt back in the room, before I was taken there and I told him that my hands and feet felt NUMB. It was like, I had just the soles of my shoes on and it was strange. It has taken me 6 yrs., but I have finally grown to feel more in my hands and feet. It feels like they are coming back to life. I sure hope so, for it is not fun, not to be able to feel ur own face or skin with ur hands.
When I started getting symptoms fI have heard that MS, can even start from an Injury?..hmm?..also Cerebral Palsey.
I don't know what to do?..What to think?..My brain feels like it has been experiencing mini-seizures.(like a record that skips-over and over) I already have loss so much time stuck in this bed...now.??
"I JUST WANT TO GET WELL...errrrr! ( little growl, is all I got.:)
I just pushing forward, the best that I could..and kept going to see Neurologists(NL), ths whole time...in search of good one, that could answer my questions and get me better, but all that they were doing, were piling up dx's, upon me.
Found:
Addison's Disease(AD) Adrenal Insufficiency of Adrenal/Pituitary gland.(Just recently diagnosed with this, so I added it in)
Chiari Malformation(CM) or Tonsilar Ectopia. The Docs are leaning closer to the latter of the two.
Venous Anomally(VA) It hurts back there and I never hurt in my head growing up. I must say that I have never seen that term before and no one told me, when or as I was growing up that I had one. This one worries me..
DDD: Cervical, Lumbar, Hip/Joint
Spondylosis
Cervicalgia(another name for Pain)
Myofascial Pain Syndrome
Migraine
Vitamin D deficiency
Pre-diabetic
High Cholesterol
Past dx's:
Diverticulitis
Endometriosis
Bone Spur removal of left Jaw
Allergies(Demoral)etc..
Sinus issues
IBS...etc..
Gosh, when u spell it out..no wonder I am in misery...hehe..Not funny hey?
I do have severe pain in my neck. I still do, at some point think, it could be the surgery...But the past 2-3 yrs., I have been in utter misery, from getting a whole lot more symptoms that have been added since my surgery! A wastebasket FULL of them.
There is one thing, I notice now Jinkies that was not mentioned in ur list that really gets to me..."Nausea". It is getting to where it is daily and my CEA test came back normal.(tumor marker test)
I wonder, if pople get a lot of nausea with MS? I haven't checked, to see if it was a symptom. I don't think that it is, but I'm not sure. With my mind, it is a wonder I ever get anything done..because my memory has just up and left me. It really gets frustrating, at times...when, people are talking to u and u can't remember. Sometimes, it comes like that mid-sentence.
I get the usual pain and let me tell u...this pain which mostly consists of stabbing, piercing feelings that can hit anywhere. Actually, that is why they have diagnosed me with Fibromyalgia, but also have Chronic Fatigue Syndrome.
I also have other symptoms...and do I ever. The numbnes is horrible. It attacks the entire left side of my body. After, being hit in the back with a nerve block. They called it an ESI. It has affected everything @ me. It has caused me to have to lay up, but wreathing around was mostly what I done. I am so thankful that The Lord has sustained me this far.
I could go on and on @ the different symptoms, I experience. There are pins/needles,burning skin,weakiness, nausea, blurry vision, head pain that feels, not just headaches do, but like someone driving a wedge...into my temples or someones thumbs being pressed into my head, on the top mostly. Not fun, at all.
It is so hard, when the people...u love, are giving up...it seems, on u because the Docs can't find an answer. I really believe it is MS that I have, but who knows...I am not a Doc, but I/we do know our bodies...I have been searching for answers, like u guys, for what just seems like so long(6yrs. for me, now)...BUT nothing compared to u guys, when it comes to all the years u have been searching.: P
IT could be that my neck surgery could be pushing downward on the other vertebra, to cause futher back pain..EVERYWHERE, but without having a competent Doc to find just what this is..IS becoming an every day thought for me, WHEN my mind WORKS competently. I donno what to do, but research my symptoms, to see if I can find that which correlates to what I am going through. I want to at least, come up with a DIRECTION to go to in..(u can tell that I have been through some things, u can identify with...right?)
ONe Doc(NL), actually commented this to me, "Well, I don't think u have Leprosy, but u might have a prostate problem." WHAT? Excuse me? How rude..I was appalled at how, he could spout that out to my face, when I was sitting there...barely on the edge of his examining table, not in exact agony at that moment in time, but my pain level was @ 6, but after that it rose up to 8.
I can't get too frustrated or my face will get NUMB, on all of the left side and if, I don't try to calm it down by raising my legs and doing some deep breathing...it, will cause it to creep on over to the right side. IT is weird and one awful FEELING...whwwo...the ibby jeebies.
One time, I was laying in the bed and the whole...That is...ALL, of my left side was paralyzed. I couldn't move my left arm or leg, at all and it felt like a 40lb.weight was laying on them. I called 911, because I thought I was having a stroke. IT scared me to death, but after the EMT's got here, they talked to me for a while, but didn't take my BP or nothing. I was wondering what they were doing??okay..They said that they thought it was anxiety and maybe, they were right, but I was laying in the bed relaxing.(?)
I have serious muscles fascilations and twitching, shaking from the chest/tremors or spasms, burning skin that feels like a Sunburn or that my veins feel like they are on fire, light-headedness and will experience vertigo when eyes are closed and have to really watch it or I will fall, respiratory illness that won't go away, post-nasal drip and passages get extremely dry, my Cortisol and ACTH has been found to be very low and so has my Prolactin levels?
I have been searching for answers, like u guys have..for a while too it seems, but not as long, as u guys..#($*%..Wow..that IS hard!!
It IS so hard, when the people u love are giving up...it seems, on u...:(...just because, it is taking so long to find a diagnosis. It is hard, when it seems the Docs can't find an answer and they don't really understand. They don't feel this pain. I really believe, this could be MS, RA, Lymes disease(was bit, by a tick @ 4 yrs. ago) that I have, but I do know it is something bad. I feel it
Here are some of my symptoms that I experience everyday...that I can think of, for there are so many. U never know, which or all is going to hit u or if, they are going to hit u all at once.:(
I have serious muscles fascilations and twitching, shaking from the chest/tremors or spasms, burning skin that feels like a Sunburn or that my veins feel like they are on fire, light-headedness and will experience vertigo when eyes are closed and have to really watch it or I will fall, respiratory illness that won't go away, post-nasal drip and passages get extremely dry, my Cortisol and ACTH has been found to be very low and so has my Prolactin levels?
It feels, as if every ONE of my joints, IN my body HURTS sometimes...and nothing, on my body...can even be touched. My body, is so sensitive and sometimes so sore like it had been whipped with some kind of leather belt, with spikes on it... IT just doesn't add up. I don't know IF, it is my neck or THE place the NL found, in my back..They don't know what it is, but I know, IT..isn't just Fibro! I am not saying Fibro isn't bad. I have been dx'd with it.(18 out of 18 tender points affected)..so, I know IT is bad.
I am a strong person and feel it has to be something else..This is tough...worse, than tough!
I do experience neck pain.(my vertebra area, at the back of my neck)."Dowenger's Hump". It can't be touched or I will just @ YELL out.
The pain being so strong in that area has kept me thinking that it was the surgery that has gone wrong all this time, but they can't see behind the titanium plates, due to an " Artifact"(reflection of the metal or something, so the Docs aren't able to see behind it). I still hurt around my surgery site and felt that maybe, the neck surgery was a "failed fusion" or messed up, in some way. I was told, by a good friend, who was a Chiro, that I had a srew placed into and opening and placed right on top of a nerve and I believed that and IT still might be true...IF, the NS that did the surgery would look further. I donno?? I told him to open me up...I was so desperate, but it was like I was talking to a wall. It could be my promblem, but when the MS symptoms started appearing, then I have become lost in a sea of people trying to get dx'd, as well.
HERE'S A GOOD ONE FOR U...A DOC, ACTUALLY SAID THIS TO ME, AS I COULD BARELY SIT ON THE EXAMING TABLE...."Well, I don't think u have Leprosy, but u might have a prostate problem."
"HOW RUDE"...and THIS IS HOW I FELT, AT THAT MOMENT. HE ACTUALLY SAID THIS TO ME, WHILE MY MOM, SON AND ONE OF HIS CRONIES WAS IN THE ROOM, WITH HIM...YEAH, TRYING TO BE BAD***.
THE ONLY THING THAT I COULD SAY BACK....AND I DID.." I don't know....have u LOOKED."
I was appalled at how, he could spout that out to my face, when I was sitting there IN agony...hhhmmm...hmmm...mmm...and I can say that I haven't went back either. IF a Doc can't help u...he shouldn't make jokes...period. What if he was the one that was suffering and someone told him he had female problems? I am sure that he would be offended, in a big way. Why can't they direct us to the ones that we need to see, instead of making the situation worse and making it take that much longer to find a diagnosis?
I did laugh, in comparison to what I went through...when I saw this picture. I was so angry that he could say that...and to me, the pic. just means that he had stepped on a nerve...and I went nuts..inside.:P
U know, after all of the suffering, I have done...and that is the ONLY word for it. Of course, there are plenty of other adjectives that I could use, but this pretty much covers all ground...and is very accurate, at the same time.
Usually, It is hard for someone, to be taken seriously...when, they don't appear to or L-O-O-K sick, on the outside.
I have utterly wreathed around in pain...like a person balled up in a fetal position. I have never ever felt so much agony, in my life and pray that Addison's is the only thing that is going on with me, for I know that the medicine they put me on(Hydrocortison), has given me one good day. Who knows, maybe there will be more to follow.
I just know, I have been so sick, for song...that I have been humbled, by my situation. I found God.
U know, I am truly...a greatful person. He has molded me into being, someone that knows...He is there. It is like, having to go through all of this, has opened my eyes and I know, The Lord is working on me.:D
I am not trying to brag or boast, in any way, shape or form. I am only stating, that from the girl, who used to only...just believe in God...has realized that I couldn't have made it through ALL that I have...IF IT hadn't been for Him.:))
Well, I prayed to Him...to ask relief from my pain and to be able to be me again. I really asked that it just be currable, that was all I wanted or needed. If this, turns out to be, just the Addison's...which, can be fatal in itself, but I really have a suspiscion that there is something else going on like MS or ALS ir something, because I have a lot of other complaints that go with so many other side diagnosis's...that go with Addison's.(AD)
I might just feel like there is something else going on because Addison's is bad. It is not fun and all I can say is that if any of u, experience any of the symptoms, I have described or have some of them...make sure to get a complete blood analysis, stay on top of it and if, u start having memory problems and can't focus or function...GET CHECKED, b4 u end of wondering WHAT HAPPENED!!!
I am still down in the bed with whatever it is. It is keeping me so fatigued, weak and achy.
I just hope that things will make a turn, for the better.:)...SOON.
I know...after reading over all that I had to say..It is wonder anyone reads this, but it IS all true.
As I reflect upon my younger days, when I was just a kid and life was good...I remember ALL of the things that my mom and dad taught me that has helped me to be stronger and depend on The Lord....for He will get us there.:D
...but I agree with everyone....I do like to talk to much....hehe...SORRY.:P
LOVE U ALL...GOD BLESS ALWAYS.:))<3 Karen
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