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Help?! Never told back issues were found: DDD, Curve Kyphosis, MPS & Other Back Issues! I also have grand mal seizures

Started by AgirLinThaWorLd on 07/31/2016 3:03am

First off, I'd like to apologize for this being such a long post but I am so confused, scared, nervous, anxious, in pain, shocked and just soooo lost in all of this. Please, bare with me and any kind of suggestions that can help me through all of this and take me to the right path I need to be on will help me so much. I dont know what my next step is or what I am even supposed to do and you will understand in just a minute.
Now, Id also like to explain as well as question why did the radiology doctors put so many findings in the report, but put "negative mri" or "negative xray" in the impressions? Every doctors I ever gave mris and xrays to only looked at the impressions and not fully read anything. Did they already know what was going on with me after looking over scans or were they only reading impressions? I also dont understand why they only focused on "hip tingling" or "hip numbness" when my symptoms went far and beyond that. Its so ridiculous. All of this!

I dont even know where to begin, but I guess I will just jump right into it:
I just found out after requesting all my mris from the last 8 years that I have several different issues going one and not one doctor, specialist or anything ever told me any of this, what ive been diagnosed with. I have seen over 30 doctors and specialist in the last 7 years or more and there were a few who tried hinting me in the right direction, but since they wouldnt explain much, I was left dumbfounded since no one actually told me I was diagnosed with anything. I only found out a few weeks ago once I was sent paperwork as why I am unable to work. Right then and there I decided to grab as many scans and records from 1 out of 5 different radiology places I have been to and I must say, I am flabbergasted at what I was able to get and feel this has been hid from me for nearly a decade. I just dont understand.
I will get to all the issues that were found in a minute, but feel I owe everyone reading this post what exactly landed me disabled 8 years ago at the early age of 21. It was the summer of 2007 and I was painting homes as a side job. One day I was on a 6 foot ladder painting a home, felt like I was going to black out and then woke up on the ground, paint all over me, couldnt move, was confused, couldnt hear anything but ringing, could hardly make anything out visually other than black dots everywhere and scared not knowing who I was or what was happening.
At first the doctors figured I just blacked out since there was no witnesses that caught exactly what happened when I fell. I had a huge bruise on my lower and mid back and the worst pain I ever had from my mid-lower back running down into my groin and left hip. The doctor figured I hit my back hard enough to cause a kidney infection since everything else came back fine...or so I thought. Sooner or later they just decided it HAS to be hip bursitis, gave me anti inflammatorys, gave me 6 cortisone shots that I now know is extreme for being in the same spot as well as 2 'surgical method' cortisone shots where epidural was needed, those 2 shots have a lot more steroids in them also in the same area (I was young and dumb and didnt know 8 is a lot in one area and regret I allowed that now) and they sent me on my merry way after calling me a liar when pain came back a few weeks later. Well. Whatever. I knew it was something bad.
Fast forward 6 months later in 2008. I was walking out of a shoe store about to get my car to drive and I had an aggressive grandmal seizure right then and there. Lucky I didnt walk out a few seconds earlier or else I would have been in a bad car accident. It was blamed on missing a dose of medication I was on but even the ER doctor wasnt sure. He didnt even run any scans, just blood work because they kept thinking I was on drugs. Proved them wrong, I wasnt on any drugs (this happens every single time I have a seizure and go to an ER even though its documented I have grand mal epilepsy. Idiots.) They decided to say it was from medication missed. Sent me on my merry way again.
Fast forward another 6 months. I was a vet tech working a great job and everything was fine aside from that darn hip and lower back pain. I had my life exactly where I wanted it and living like any normal woman in her early 20s. This is also exactly where my life stopped and I have been stuck in the same every day loop for the last 5 years or so. I began to have terrible migraines in my upper neck mainly at night. I guess better to explain it as the part that indents behind your head and in your neck where you feel a ball...does this make sense? I started to call them seizure headaches or seizure migraines and neurologists were all stumped at me calling them that. Now, I know its because it has absolutely nothing to do with a neurological stand point and everything to do with the spine.
I ended up having 13 seizures in a week and then that boiled down to an incredible amount of pain just in general, but also from what I am told, falling like a tree with no reflex to catch myself obviously while in the middle of a grand mal seizure. I was also told your body during a seizure can cause more injuries and damage statistically, than actually falling in general due to your muscles spasms. I have always know I have injuries somewhere and my hip especially had something going on but due to the seizures, they threw every symptom I have out the window, and looked at it as a neurological issue. Several said I was over exaggerating or lying, and others said that im not lying but over exaggerating the pain and/or my "brain is telling me I am injured when really theres nothing wrong".
Hah...yeah ok. Well, now I have evidence and I am not particularly happy...especially since there are major issues I feel could have been fixed at a certain point or at least treated years ago before it got out of hand and I wouldnt be laid up more days than not. Being 29 years old, I shouldnt be in the situation I am physically.
I have been called a liar. Over exaggerating. A drug Seeker. What really makes me angry is they had the evidence and knew what was going on and never told me. Instead, they decided to call me a liar, over exaggerating pain and even called me a drug seeker when really all I ever had been asking for was to fix the issue even just to go in as exploratory surgery instead of throwing medication at me.
On to the findings from MRI's and X-Rays starting from 2008 until present:
First and for most, I should explain that it states I have had scoliosis (curved kyphosis) my whole life and never told this. I was that one kid out of the whole class every single year who always got sent home with a paper to give to my doctor because they found a curve to my spine but I was told by my doctors it was a mistake. Every. Single. Year. From 1st grade until my senior year when I graduated in 2005. Why? Thats my question. Why would they say no when I not only was sent home with paperwork explaining their findings but also it shows in the history of mri report?
I also have:
Anterolisthesis - Where vertebral body slips onto vertebra below...It think?
Myofascial pain syndrome - A chronic condition affecting the bodies soft tissue. Occurs when muscles, tendon or ligaments are strained or injured. Trigger points/pressure points can cause referred pain (I am guessing this is the issues with my hip. Referred pain from my back to my hip that is causing the dull pain, as well as strained ligament in my hip that keeps restraining since every mri of that area shows abnormal marrow edema and this which could be whats causing a stabbing pain. I am not a doctor but from research this is my conclusion anyway)
Annular bulging, flattening of L4-L5 and L5-S1, at least 1 disc bulge that after researching exactly what the report of the mris say, I believe hasnt herniated due to the myofasical syndrome or another ligament condition because I was told a few times I had a soft tissue and ligament condition that made my ligaments shorter than my bones and more flexible than the average person and it can cause tears easily (Ive had 6 that were caught in both hands that were seen at least). MPS also is great not showing injuries on scans such as disc bulging well enough to see whats going on, on mri, if a ligament does not tear due to flexibility as well and pushing bones back like a tether. I am thinking they just wrote this off as not a big deal because it hasn't herniated but I am so afraid if I move wrong that it will do so.
Misalignment between T1 and T2, possibly T3 as well and in the notes states they believe its due to an old ligament tear. They also found a fracture in the same area.
Degenerative disc disease of the lumbar spine and cervical degenerative disc disease that caused osteoarthritis and osteoporosis, facet joint injuries that show marrow edema and resurrect iliopsoas sprains in the left hip facet joint as well as sprains my left shoulder blade.
The fact DDD was never told to me is a big one that really is frustrating in seeing. This could explain everything along with MPS together. I must have already been having degenerative deterioration in my bones and that fall from the ladder, being as bad as it was, had to have kick started it at an early age being only 21.
I constantly hit my shoulders during seizures and the last 2 that left ridiculous amount of pain and bruises on my left shoulder has caused a world of grief and discomfort. The ER also said the last 3 times I bruised the same lung as well as sprained the same shoulder. In the exact same spot? It doesnt seem right to me. How is that possible given those injuries were all at least 5-6 months apart?
I was never told any of this and shocking I found everything when I asked for my records after receiving paperwork stating I am unable to work due to uncontrolled seizures as well as all these back issues. I was completely stumped when I read about the DDD and myofasical pain syndrome next to the seizures.
A few other important key symptoms I think also have to do with my back now...There have been over a dozen times in the passed year when I wake up in the morning, feel fine seizure wise, aside from the normal discomfort in my lower back and neck after laying for a long period of time. The one thing I now know to pay attention to is if the pain in my left hip is completely gone, I need to take a minute until I can feel that discomfort to get out of bed and here is why: Several mornings, I get up and try to stand, I literally can not feel from my hips down to my toes. Everytime this happens I think "this is it! youre forever paralyzed and never walking again!". I fall repeatedly half asleep and one time it lasted for over 10 minutes. My mom always runs to me thinking I am seizing but really, I am temporarily paralyzed from the waist down 100%. I knock into my dresser, knocked a mirror off my vanity once and made a mess of my bedroom stumbling everywhere freaking out and attempting to kick my legs thinking they are asleep but my brain just can not connect to my lower extremities. I have my mom grab a sewing needle every time and I prick my legs over and over and never can feel anything. Its the strangest feeling ever. I even sprained my ankle the very first time trying to stand up over and over but ended up stepping directly on the top of my foot. It was wrote off as a seizure in my sleep but obviously its more serious than a seizure. I know my body and I know what I feel like after a seizure. This was not one.
I also have recurrent pleurisy that turned into pneumonia once and I am now convinced something is compressing causing that lung infections to not go away. I also have extremely bad heart palpitation that have been wrote off as anxiety. It could just be related to my lungs and having a hard time breathing, thus causing my heart to behave strange. I suffer from anxiety because of fear with epilepsy that I deal with all the time but this is completely different. When my heart begins racing out of no where, it also skips 2 to 3 beats or so after every 2 to 3 fast beats. It can go on for literally hours. The last time it happened was 5 nights ago and it lasted for 10 hours straight from 6pm until 4am and not easing up. I was scared and thought I was going to die of a heart attack. Of course anxiety set in but the physical issues of my heart is what caused anxiety. Not the other way around. No, I dont go to the ER for this because every time I do I am handed medication for anxiety or muscle relaxers which is ridiculous. Could this be some kind of compression putting pressure on the upper organs in my body? Maybe due to the old fracture they found around T1-T2?
I went to a chiropractor last year because I was out of options since no doctors would listen and several denied seeing me for really no reason. I know its either because of my medical or because they see records of whats happening and not willing to help. Now I know theres a ton going on and no one wants to fix a person who cant be fixed, right? The chiropractor was the first person to ever tell me anything was wrong. He said I have curved kyphosis (which mris also say this, the scoliosis, although chiropractor didnt explain this well to me), I have a misalignment of T1-T2 maybe T3 (mris also say this) and he also said the xray looked like someone in their late 30s or early 40s and not the usual xray findings of a 28 year old. I left in a massive amount of pain every single time, more than the pain I had walking into the chiropractors clinic so I am very skeptical. I warned him not to touch my hip and about 2 months in, he attempted to pop my hip, failed as it was ended up getting locked in place and i went home holding back tears. Needless to say, I never stepped foot back into a chiropractors clinic again. Now I believe the misalignment could be fixed but if I didnt have other so many other issues going on, I wouldnt have been in a tremendous amount of pain and it may have helped. That isnt his fault, he just didnt see all the issues since he only had an xray. I dont want anyone touching my back with so much going on I wasnt told about. What the heck?
The aggressive seizures found in the back left temporal lobe of my brain, I am told is most likely from when I had bacterial meningitis when I was 12-13 years old and will always be a long term 'side effect'. I am completely convinced the isolated seizure disorder that randomly showed up on the right front temporal lobe on the most recent EEG has nothing to do with the other side of my brains seizures because it wasnt there before, the EEG impression says its completely isolated and behaving differently on the tests than the back temporal lobe and I believe now it is from my back some how since its just getting worse. This is all so frustrating.

Can anyone help explain what exactly all this means, everything they found on the scans that I listed above?
Did one thing cause another?
What does a 1.0mm disc bulge without nerve root displacement mean?
Did falling off a ladder cause DDD to kick start in full gear? I know I have had myofasical pain syndrome my whole life, if not possibly another kind of ligament disorder because I don't fully know if MPS causes ligaments to grow shorter than bones and thats what I was told when I was 19 and since I have torn so many ligaments and always hurt myself in stupid situations where the average person would not. I am so lost and so scared if I move wrong ill be paralyzed.
Whats my next step? I am scared to go about this the wrong way in fear or doctors becoming irritated that I found what was being withheld from me and not helping to give referrals to the right doctors. I have been sent to pain clinics and they always acted like I was lying because I had no evidence of anything happening. All 3 were rude, mean and basically threw me out of the room within the first 5 minutes. I even had one woman laugh at me when I explained it was a dull stabbing pain in my hip. I was told it didn't make any sense and it either had to be dull or stabbing and not both. Now I know its because two different issues were going on that caused that pain. Referred pain from my back causing dull pain and an actual reoccurring injury in my hip causing the stabbing pain and sometimes burn feeling. It ALL makes sense. Every symptom, every injury. The one thing I fully don't and will never understand is why all this was hid from me until now.
I have an appointment with my primary doctor next week and he is going to ask me what he wants me to do. Who do I go see now and I would like to know if anyone else have gone through anything similar to what I am dealing with now? I cant get angry when I go in there. I have to keep calm and collected but assertive or else I will get no where.
Any comments are extremely helpful considering I dont know where to go, who to see..I don't even know how to present and explain any of this to my doctor. Thank you!

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