C4-5 HERNIATED NUCLEUS PULPOSIS AT JUNCTION OF RIGHT ANTEROLATERAL RECESS AND RIGHT NEURAL FORAMEN;
C4-5 NEURAL FORAMINAL NARROWING ON RIGHT SIDE AFFECTING VENTRAL C5 NERVE ROOT;
C5-6 RIGHT SIDED DISC HERNIATION EFFACING THE VENTRAL ASPECT OF THE THECAL SAC ON RIGHT SIDE DISPLACING THE RIGHT SIDE OF THE SPINAL CORD POSTERIORLY;
C5-6 NEURAL FORAMINAL NARROWING ON THE RIGHT;
C5-6 SPINAL STENOSIS;
C6-7 DISC HERNIATION RIGHT SIDED EXTENDING FROM POSTERIOR CENTRAL ASPECT OF DISC INTO RIGHT NEUROAL FORAMEN;
C6-7 EFFACEMENT OF RIGHT SIDE OF THECAL SAC EFFECTING VENTRAL NERVE ROOT RIGHT C7;
AGGRAVATION OF DEGENERATIVE CHANGES MANIFESTED BY DESICCATION AND NARROWING OF DIFFUSE NATURE THROUGHOUT CERVICAL SPINE;
LINEAR HIGH SIGNAL ON T2;
AGGRAVATION OF DEGENERATIVE CHANGES THORACIC SPINE;
AGGRAVATION OF DEGENERATIVE CHANGES LUMBAR SPINE;
LUMBOSACRAL TRANSITIONAL SEGMENT;
ENDPLATE IRREGULARITIES LUMBAR SPINE;
RIGHT MEDIAN NERVE NEUROPATHY RIGHT WRIST;
CARPAL TUNNEL SYNDROME;
NECK PAIN;
PINCH NERVE C4/5 RIGHT
LEFT AND RIGHT SHOULDER PAIN;
BACK PAIN;
HEADACHES
JAW PAIN/TMJ
FRACTURE OF TOOTH #14;
PERRICORONITIS OF TOOTH #16;
NUMBNESS AND TINGLING ACROSS BACK;
DIFFICULTY BENDING;
DIFFICULTY LOOKING AND SIDE TO SIDE;
DIFFICULTY STANDING, DRESSING, DOING HOUSEHOLD CHORES, LIFTING, SLEEPING;
DECREASED CERVICAL LORDOSIS;
DECREASED LUMBAR LORDOSIS;
INCREASED THORACIC KYPHOSIS;
MARKED ATROPHY OF UPPER TRAP, LEVATOR AND SUPRASPINATUS;
TENDER PARASPINALS CERVICAL AND THORACIC SPINE;
NUMBNESS AND TINGLING DOWN BACK AND INTO HEAD;
DECREASED SENSATION RIGHT SIDE OF CERVICAL SPINE, UPPER BACK AND UPPER EXTREMITIES;
DECREASED PECTORAL FLEXIBILITY;
UNABLE TO FEEL UPPER BACK DUE TO LOSS OF SENSATION;
SENSATION LOSS INSIDE OF MOUTH;
LIP NUMBNESS;
HEAD TINGLING;
RESTRICTED RANGE OF MOTION CERVICAL SPINE;
STRAIGHTENING OF THE NORMAL CERVICAL LORDOSIS CONSISTENT WITH PARASPINAL SPASM;
THORACOLUMBAR SCOLOSIS;
NUMBNESS AND WEAKNESS BOTH ARMS AND SHOULDERS;
CERVICAL PAIN RADIATING TO BOTH SHOULDERS AND DOWN RIGHT ARM INTO HER THUMB AND DOWN LEFT ARM TO ELBOW;
DIFFUSE NUMBNESS ENTIRE HEAD AND FACE;
CHRONIC PAIN SYMDROME;
BRACHIAL NEURITIS;
RADICULITIS;
DISPLACEMENT OF CERVICAL INTERVERTEBRAL DISC;
THORACIC DISC DEGENENERATION;
THORACIC SPONDYLOSIS;
spinal stenosis LUMBAR
LUMBOSACRAL NEURITIS;
PAIN IN LIMB;
ABNORMALITY OF GAIT;
VISUAL DISTURBANCES;
IDIOPATH AUTONOMIC NEUROPATHY;
CERVICALGIA;
PAIN IN THORACIC SPINE;
myafacle pain (spelling is not right sorry)

oops forgot to add this was over the 3 years of seeing all the Drs and after going to the Cleavland Clinic

and the IME Dr said I was just fine, nothing was wrong with me, I just need help cuz it was all in my head,
and every Dr was wrong,

WOW - You have a lot of injuries, i'm so sorry and really hope you feel better soon!!

I can't help you understand them unfortunately but just wanted to say that I hope you get some much-needed answers real soon and I would definitely speak to your Doctor and see what he/she says!

We never got the results of my MRI so i'm not sure what mine said ... my Doctor just said that I had RSD/CRPS type 1 and that was the end of the matter really as far as he was concerned although I have always wished that I would have asked him what they found!!

I have some of the problems that you have such as the Abromal Gait, Headaches etc etc - I was told not so long ago that my gait on my foot was wrong and I was pretty flat footed and the Doctors also believe that I have one leg bigger than the other!! As anyone ever told you if you are Hypermobile? My Doctor did some simple tests on me and it was found that I was REALLY hypermobile and he said that most people with RSD are hypermobile also and that it could be one of the triggers to develop RSD! I found it pretty interesting and I was told that even if my RSD was to get better that I would always have to have Physical Therapy sessions!!

I hope you get some answers soon and please speak to your doctors and see what they say! Keep us posted when you can!

Ali, I am so sorry you have to know all them big words, I wish you could just be a young lady and not have to think about them words, but you sure did take this all on like a rock star!

no I never even heard that one before, I am going to look it up,
Answer! ha, as far as the IME Dr, say's there is nothing wrong with me,
and everyone that has seen me, well dose not know anything, and he also was talking about the Cleavland Clinic here is the US, its in Ohio, I am sure you have seen outer talk about and its one of the top, hospitals in the US, #3 I think
Ali, I hope you get the care and need also get better soon,
hugs to you ,

Kelly

Ali,
I look it up, and no that is not what is going on, but you have that?
I am so sorry, I see you have that on the bottom of you page, I should of look it up before, I am going to look up the rest of what you have,
is yours from RSD? or where you born with it,? I seen where you can be born with it, or from injury,

Hay when are you going to be in the US? Did you lose all the snow you had there? I seen on TV the week of your B-day and they where talking about the UK and how much snow, you are getting I thought of you right away,

oh, we talk one day about my oldest doing her internship there
she is not still there, she spent 3 mouths there, smiles

peace and hugs to you
Kelly

Hi Kelly,

Thank you so much for your kind words, I really appreciate them! I'm glad that I could help you, even if it was just in a small way!! I really hope you get some much-needed answers real soon and I am thinking about you!!!

I was born with Hypermobility Syndrome (HMS) and believe I got it from my father has he has it pretty badly like me. I wasn't diagnosed with it though until we went to the hospital to see what was the matter and found out that I had RSD. I was always VERY clumsey as a young child and couldn't do some things like most of my friends but we never thought anything of it really and I guess all along, it was the Hypermobility Syndrome! 2 of my Pain Management Doctor told me that nearly everyone with RSD are Hypermobile to some varying degree and it is believed that that can be a trigger to most peoples RSD if they start from an injury as people that are Hypermobile have VERY flexible joints that can get into lots of strange positions! My RSD started from an ankle sprain and my ankle has been severely rotated to the side ever since so I DO believe that me being Hypermobile could have made it worse! I would speak to your Doctor and see what they say - it might just be that you are slightly Hypermobile and they can perform some simple tests on you such as bending your limbs to see how far they can go and they can run some blood-tests that can determine how badly affected you are!!

A lot of the people that I have spoken to with RSD are Hypermobile - in fact, I think nearly everyone that I have spoken to have ALL said that they have found out that they are Hypermobile to some varying degrees!!

I also developed the Dystonia from the RSD. The Dystonia started straight after my injury and it can be even more debillitating than the RSD at times as I can't move my foot at all to put it into any proper shoes or socks!!!! Most of my shoes have ended up seriously moulded to the shape of my foot because of the Dystonia and I have ruined LOTS of shoes!!!! My foot is rotated out to the side in eversion at a 45 degree angle and the PT's and my Doctors have tried everything to try and get it fixed from muscle relaxants to splints and nothing as worked unfortunately so far!!! I am due to go onto an Intense Physical Therapy Program in April and have been told that if things don't improve, I will HAVE to have my leg casted as a last resort ... that is something I definitely don't want to have done so I really hope and pray that things get better before then!!!

I developed the Myoclonic Spasms after I had an ingrown toenail removed and they are extremely painful and cause my legs to move up and down all the time without me being able to control them!!! The spasms have settled down a little but they are still no where near fully better!! My PM Doctor said that the Myoclonic Spasms are a severe complication of the RSD AND Dystonia and my Neurologist wants me to try Keppra if they don't get any better as I am loosing lots of muscle tone and my ankle gives out all the time!

I have always had Dyspraxia but never found it out until my Physical Therapists began to notice it during some of my PT sessions. They noticed that I couldn't co-ordinate my legs much at all and I often couldn't tell where my legs were and couldn't perform even simple tasks that they asked me to do! I am supposed to go and see someone soon to get an accurate diagnosis however my Doctor said he knows for certain that I have it! Dyspraxia works in a similar way to RSD and is caused by the brain sending wrong singles to your body so that you don't know what to do!!!!!

I'm not sure how long I have suffered from Arthritis however my PM Doctor thinks that it is caused by the RSD as I never really had any problems before I injured my ankle!

I really hope that you get some answers soon as I KNOW how hard it is to cope with all of this and how confusing it can be at times!!

The weather is a bit better here in the UK now but we are expecting more snow storms real soon - ugh!! My leg can definitely tell that the weather is cold as the pain as gone up a lot - I really hope things improve soon as I hate the winter!! On Monday, the weather was terrible and you couldn't do anything or step foot out of the house!! I fell going out to the taxi cab that takes me to school the other day and I hurt my leg a LOT - the pain has been so much worse ever since!!

Well I need to go as my arm is hurting a lot from typing. If you have any questions though, please let me know!!

Ali Hun
Oh my
I am so sorry, you have a lot going on, and yet you are still helping others
wow,
I sure hope you get the help you need,

ok now I understand a little better, so my foot and toes being turn in word
is what you call Dystonia, and my leg is also bending in word also, you can see the curve in it, wow, you are so smart, and brave to talk and offer help and confute to others and teach them about this, monster
can I adopted you?

and we talk before about the type of spasm I have are a lot like yours,
they are full body, I can not control them, and they course much more pain

much love to you
Kelly

Thank you Kelly for your kind words - I really appreciate them! It can be hard trying to talk about my health conditions but I realised that if I can help someone else get the help and treatment they need and not go through half of what I have that it would be worth it!! I think my RSD and experiences is probably one of the reasons why I wanted to be either a PT or Psychologist when I leave school has I have learnt so much!!

I have just looked at your pictures that you sent in the PM and have replied and sent you some pics of my RSD leg and arm. Your leg looks a LOT like mine although mine is rotated out to the side, not inwards. I also have the strange crease and it looks as though my leg doesn't have an ankle bone as the swelling and rotation is that bad!! I also have a vein near my ankle bone that seems to "pop" out a lot and goes into spasm and it causes extreme pain and discomfort!

I really hope you get the help you need as I hate that you are going through all of this because I KNOW how hard and painful it is! If I can help you or you have any more questions, please let me know - I am here for you always!

OK, to start you have the bones that make up your spine and they name them as (starting at the top cervical or "C", thoracic or "T", lumbar or "L", and sacral or "S". After that, they just number them, thus a C4 is your fourth cervical vertebra from the top. Spaces are designated by what sits above and below, so if that space is narrow or bulging, it's just a whorthand to identify which space.
C4-5 HERNIATED NUCLEUS PULPOSIS AT JUNCTION OF RIGHT ANTEROLATERAL RECESS AND RIGHT NEURAL FORAMEN; (you have a herniated disc on the right front in the space between the cervical vertebra C4-C5)
C4-5 NEURAL FORAMINAL NARROWING ON RIGHT SIDE AFFECTING VENTRAL C5 NERVE ROOT;(there is also a narrowing of the space which pinches the nerve that comes out through that space of fifth cervical vertebra)
C5-6 RIGHT SIDED DISC HERNIATION EFFACING THE VENTRAL ASPECT OF THE THECAL SAC ON RIGHT SIDE DISPLACING THE RIGHT SIDE OF THE SPINAL CORD POSTERIORLY;(another disc herniation, this one pushing to the front pushing your spinal cord back)
C5-6 NEURAL FORAMINAL NARROWING ON THE RIGHT;(another space that is more narrow than it should be between the cervical 5 and 6 on the right side)
C5-6 SPINAL STENOSIS;(narrowing of the actualy canal that your spine passes through in these vertebra)
C6-7 DISC HERNIATION RIGHT SIDED EXTENDING FROM POSTERIOR CENTRAL ASPECT OF DISC INTO RIGHT NEUROAL FORAMEN;(another bulging disc pushing out towards the back on the right that goes the whole way into where your nerve root should pass out through)
C6-7 EFFACEMENT OF RIGHT SIDE OF THECAL SAC EFFECTING VENTRAL NERVE ROOT RIGHT C7;(some displacement of one of the membranes which is causing pressure on the front of where the nerve should pass out on the right of cervical 7)
AGGRAVATION OF DEGENERATIVE CHANGES MANIFESTED BY DESICCATION AND NARROWING OF DIFFUSE NATURE THROUGHOUT CERVICAL SPINE;
LINEAR HIGH SIGNAL ON T2;(worsening arthritic-type changes as evidenced by all of the general narrowing through all of the cervical vertebra which they can see by changes in the test signal at throacic two)
AGGRAVATION OF DEGENERATIVE CHANGES THORACIC SPINE;(worsening arthritic changes in throacic spine)
AGGRAVATION OF DEGENERATIVE CHANGES LUMBAR SPINE;(worseing arthritic-like changes in lumbar spine)
LUMBOSACRAL TRANSITIONAL SEGMENT;(this is just a place, but I think it's more wear-and-tear changes in this location)
ENDPLATE IRREGULARITIES LUMBAR SPINE;(there are irregular areas on the bony pieces that stick off of the vertebra (the part you can feel when you run your hand down your back, likely small spurs of bone)
RIGHT MEDIAN NERVE NEUROPATHY RIGHT WRIST;(nerve pain in the nerve that runs down your arm and towards your pinkie on the right)
CARPAL TUNNEL SYNDROME;
NECK PAIN;
PINCH NERVE C4/5 RIGHT
LEFT AND RIGHT SHOULDER PAIN;
BACK PAIN;
HEADACHES
JAW PAIN/TMJ
FRACTURE OF TOOTH #14;
PERRICORONITIS OF TOOTH #16;
NUMBNESS AND TINGLING ACROSS BACK;
DIFFICULTY BENDING;
DIFFICULTY LOOKING AND SIDE TO SIDE;
DIFFICULTY STANDING, DRESSING, DOING HOUSEHOLD CHORES, LIFTING, SLEEPING;
DECREASED CERVICAL LORDOSIS;(decrease in the normal curvature of the cervical spine, as in the spine isn't straight like a rod)
DECREASED LUMBAR LORDOSIS;(same as above, only lumbar)
INCREASED THORACIC KYPHOSIS;(the thoracic spine curves sideways in an abnormal way to some degree)
MARKED ATROPHY OF UPPER TRAP, LEVATOR AND SUPRASPINATUS;muscle weakness from non-use ?neck?)
TENDER PARASPINALS CERVICAL AND THORACIC SPINE;(you have pain when they touch the sides of your spine)
NUMBNESS AND TINGLING DOWN BACK AND INTO HEAD;
DECREASED SENSATION RIGHT SIDE OF CERVICAL SPINE, UPPER BACK AND UPPER EXTREMITIES;
DECREASED PECTORAL FLEXIBILITY;You can't move the full range of motion of your arms using your chest muscle)
UNABLE TO FEEL UPPER BACK DUE TO LOSS OF SENSATION;
SENSATION LOSS INSIDE OF MOUTH;
LIP NUMBNESS;
HEAD TINGLING;
RESTRICTED RANGE OF MOTION CERVICAL SPINE;(you can't move your neck through the full range of motion)
STRAIGHTENING OF THE NORMAL CERVICAL LORDOSIS CONSISTENT WITH PARASPINAL SPASM;(the normal curvature of your cervical spine is decreased and it looks like it is from spasm of the muscles on either side of your spine)
THORACOLUMBAR SCOLOSIS;(both your thoracic and your lumbar areas have some shifting side-to-side to some degree which is abnormal)
NUMBNESS AND WEAKNESS BOTH ARMS AND SHOULDERS;
CERVICAL PAIN RADIATING TO BOTH SHOULDERS AND DOWN RIGHT ARM INTO HER THUMB AND DOWN LEFT ARM TO ELBOW;(pain in you neck going down to these areas)
DIFFUSE NUMBNESS ENTIRE HEAD AND FACE;
CHRONIC PAIN SYMDROME;
BRACHIAL NEURITIS;(nerve pain in your arm)
RADICULITIS;(more nerve pain)
DISPLACEMENT OF CERVICAL INTERVERTEBRAL DISC;(one of the cervical discs is slipped out of alignment)
THORACIC DISC DEGENENERATION;(wear-and-tear arthritis-like change in your thoracic discs generally)
THORACIC SPONDYLOSIS;
spinal stenosis LUMBAR(narrowing of the apce that your spinal cord has to pass through in your lumbar vertebra)
LUMBOSACRAL NEURITIS;(nerve pain in the lumbar and sacral areas-lower back)
PAIN IN LIMB;
ABNORMALITY OF GAIT; (the way that you walk is abnormal)
VISUAL DISTURBANCES;(difficulty seeing)
IDIOPATH AUTONOMIC NEUROPATHY;(for an unknown reason you have difficulty with your autonomic nervous system-fight-or-flight response and what your body does in these situations)
CERVICALGIA;(pain in your neck)
PAIN IN THORACIC SPINE;(pain through your thoracic spine)
myafacle pain (spelling is not right sorry) (my guess is pain in the muscles of your face?)

Hope this helps,
Lori Lee

Thank you Lori Lee for taking the time to respond to this. I took one course of Anatomy and Physiology in college, um.....years ago.....and could have taken a crack at it, but was afraid I would have gotten some things wrong (test anxiety!!). Thank you again SO much for explaining this to her/us!!!