[StrongerMan]

Hello all,

It doesn't seem like I have ability to upload pics on my profile page yet.. since I am new? Well, I am posting here due to the fact that I have neck pain and many of my symptoms could be a result of either a vertebral or soft tissue injury or both in my cervical spine. I am sorry if this rambles as I have had so many symptoms over the course of the past almost 6 months. My past health history includes a work related L4-L5 moderate disc herniation in late 2010. An MRI also showed mild degenerative disc disease. I had 2 epidurals and a nucleoplasty and that injury has stabilized without the need for surgery (at least so far).

My symptoms started with moderate on and off neck pain that started early last summer. I had fallen off my bike hard twice to the side the summer before but had no pain. I confess to being a self manipulator (cracking my neck) for many years.. I'm 44 and suspect this may have set me up for later trouble. Anyway, one morning I awoke with a bad crick in my neck from what I presumed was sleeping on the couch with my neck at a bad angle. It got better but I always had soreness. Later on last summer I noticed a loss in range of motion and felt a sharp pain when turning my head to the left side. The pain and stiffness seemed to be mainly on the left side. I also had a slight shooting pain down into my shoulder if I turned my head sharply down and to the left. I figured this would all subside on its own with time.

This was my only issue until late last summer into early fall when all hell broke loose. I began experiencing dysphagia mainly with solids. It would occur seldomly at first (every few days) but progressed into my only taking soft foods and liquids. The dysphagia seemed to subside after sleep but come on later in the day. A swallow study was done but was normal. Of course I had it in the a.m. before it would kick in. Around early fall I started to get muscle twitches in my face and upper extremities and progressing into my legs. I also had what I can only describe as restless leg syndrome which I have never had before as well as tingling or pins and needles. This was very disconcerting for me and my anxiety only got worse. Not long thereafter I started to experience numbness and burning in my tongue and numbness in my face.. left side for both. This only lasted 2 weeks.

Another transient symptom was tinnitus which was not a ringing but more like a tick tick tick sound. Along with this was a fullness in the left side of my head like sinus pressure or being in a plane at altitude. These symptoms mostly subsided after a couple of weeks. I did not have insurance at the time so I was trying to figure this all out on my own. Since I also had fatigue, sensitivity to cold, shortness of breath and intolerance to exercise as well, I suspected thyroid or a nutrient deficiency. Subsequent blood tests indicated normal ranges for TSH, electrolytes, iron etc...

Meanwhile, my symptoms expanded with an achy, heavy feeling and loss of dexterity in my right arm and hand. I also had twitching in my arm and hands that would cause my fingers to have tremors. The twitching in my leg began to mainly affect the left calf and shin although I could have twitching all over my body. Things progressed in my legs more with what seems like myelopathy... achy, heavy, spastic feeling in legs that affects my walking and balance. I also have sciatic nerve sensitivity but not really pain. I can feel my hip tugging when I wiggle my left big toe. This leg stuff all comes and goes and usually comes in the evening and is with me when waking. I test my strength during these bouts and it seems normal. Much of this seems to coincide with a increase in pain and heaviness in my neck and recently a numbness again in my left side of head, jaw and lips. I have hyper-reflexia in my legs and my knee jumps like crazy now when the dr. hits it. It was always good, but not like this. The twitching in my left leg moved into my foot and often seems like popcorn is popping under my skin along with tingling and buzzing sensations. Also my arm symptoms are felt in both arms but this also comes and goes.

After a 3 week period of relief from the dysphagia, it came back worse in mid January to the point where I would lose the total ability to swallow solids or even liquids for short periods. It is oropharangeal meaning it doesn't seem to involve my esophagus. I overcame my fear of choking (aspirating) with this last bout and learned to relax and either hold the food til it cleared or spit and cough it up. This way I could manage to consume a wider variety of foods and keep my weight up. The past 3 weeks have seen the dysphagia subside again to near normal although I do have a slight hesitation at times. I have declined another swallow study since I don't have confidence they will test me when I am having trouble.

Once I got insurance I began some serious testing. I was scheduled for a brain MRI 1/4 which came back normal and a cervical mri 1/29 that they also said was clear apart from "muscle spasms". An EMG of my legs was normal. They advised me to see an orthopedist but I decided to just wait for my neuro appt. and have her refer me. The neurologist concurred that my tests were normal. She could see the twitching in my left shin but I passed the other tests. She sent me for bloodwork for copper, ceruloplasm and heavy metals. I have yet to hear back on those. I also will have an arm EMG in April. My followup with her is an excruciating 4 months away. I have since reviewed my neck mri on my own and do see what looks like a compression and herniation at c5-c6 that appears to press into the thecal sac and slightly indent the spinal cord. On one image there appears to be a bone spur with a clear view of the herniation . I have read and seen images that recommend an upright mri with load vs. recumbent for the neck as the loading of the spine in the latter can reveal stenosis not visible in the former. I also have a loss of lordosis which may explain the muscle spasm finding.

Well, this is where I am right now. No one can seem to give me any direction with this and that leaves me in this state of limbo. I feel they are dragging their feet because they think it is anxiety or depression related or something and I don't seem to be suffering all that much. But this is a nightmare.
I certainly have had bad anxiety and depression due to all these scary symptoms. But I am way way past considering anything psychological. I don't know my best course of action. I am thinking of switching to a neurologist or neurosurgeon experienced in the spine and pushing for the upright mri. My dysphagia and other head and facial symptoms seem cranial nerve related of course. I have read tons on whiplash syndrome or cervical sympathetic syndrome causing all that. Maybe my bike falls sprained a ligament or cause some instability or subluxation in the upper cervical that is to blame. The neck pain is real enough but there must be multiple things going on. The only other factor, for my lower body that is, is I do have more lumbar pain returning in the area of my previous back injury. Could this be compounding the neck symptoms and nerve abnormalities in my left leg?

If my brain mri is normal, I have normal muscle strength for the most part, no atrophy other than normal due to recent inactivity and no other signs of neurological disease, what can I do? I cannot continue on like this without an answer indefinitely. I am not working at the moment and was taking classes before this started. I do have some money saved up so I am not hurting financially at the moment. But I don't want to eat into my savings for very long at all. Luckily, I don't have many financial responsibilities right now. I get no sleep many nights with the twitching, aching and worrying and don't want to go back on any benzos. I take passion flower and melatonin and skelaxin (muscle relaxer) here and there. No other meds. This is taking a toll on me mentally.
I can't really seek employment until I get this all figured out and concentrating/studying for a class is not realistic right now either. I can't partake in physical activities I enjoy. I feel incredibly stuck. Am I just being a wimp and should I be able to forge through this? Of course that would be a little easier with a diagnosis. But nobody seems to be in a hurry. I left a message with the neuro office and they say they will get back to me within 24 hours. You'd think I was calling about a common cold.

As for speculation, I am not looking for any diagnosis here.. per say.. at least not one with any trigger maladies (and we all know which one in particular I mean). Well, I know most of you know the deal anyway. But I welcome comments from anyone who has suffered similarly or has any advice on how to best handle this. I have posted my neck mri on PsychCentral under the same username.. strongerman... for simplicity's sake. They are digipics off my pc but I think they adequately show the disc in question. Maybe someone can take a look and tell me what they think. I will keep trying to upload them to this site.

Again, thank you for bearing with me,

All the best,
StrongerMan

[StrongerMan]

Forgot to mention Lyme Western Blot was negative apart from band 31.

[ginnie]

Welcome to Neuro Talk. I read your post with concern. Your symptoms sound like there is something going on with your neck. In fact, I had many of the same symptoms and have two spinal fusions resulting in C3-7 being plated.
I think you need some more opinions. The swallowing issue, and not being able to turn your head well, should be looked at by several other neruologists. Those opinions are really the best thing you could do for yourself. I would also tell you to keep a pain journal and a copy of all medical records you have so far. This will help the Next neruologist. Not all conditions are Dx'd first time around. I will look for your MRI. Leesa is the best on this site for interpretation of results. I tend to look up each word, and go line by line. I really hope you will continue to seek help. This is about quality of life, and eating soft foods forever doesn't sound so good. Have you had an upper GI done? I would also reject the emg without another physician in the field saying its a good idea. Any herniation, that presses on the spinal cord, will cause the pins and needles in your arms, and loss of strength. I hope you can find resolution to this quickly. Keep in touch with us here. There are many of us with spinal issues. I do wish you all the best. ginnie

[StrongerMan]

Thanks Ginnie,

Just seems so long to finally see any neurologist. I can't imagine the time needed to see several. I only have the disc for the neck mri right now. They didn't give me the report. I had to call yesterday to finally get it sent over to the neuro's office. Nobody is working for me I feel. I was thinking about foregoing the arm EMG. I could see it if I had bad arm symptoms and obvious stenosis. I really don't think there is anything wrong structurally with my GI tract in terms of the swallowing. I think cranial nerves are involved.

I guess what I need to know now is if the drs. are going to investigate and work on my behalf to figure this out, or are they just going to say "well, everything looks ok and you aren't on the floor dying, so you'll just have to suffer until you have permanent nerve damage." As you can tell, I don't have much experience with this. Why am I the one to seek out an upright mri to show the spine with load? Why should I be the one to ask for a new mri with contrast? The neuro's office said they'd call back within 24 hours. Well, it's past that. I guess they are showing me. Why don't doctors call and actively engage their patients in their own care? Again, I am not seeing a neurologist because I want to.

[ginnie]

The real thing or issue, is evidently getting a neuro to actively help you. It seems from what you are saying you are being pushed this way and that, with no real help available. I think some docs. throw these tests at you, as they don't know what else to do. If you have your MRI, post it, many hear can help with reading it. I did suggest a new neruo, as you are having trouble with your current doctors. No it shouldn't be up to you to do all that inquiring. The doctor should actively seek to find out what the real problem is.
My first neuro and surgery didn't go well, I didn't investigate, read my own MRI and get my records to find out what was going on. I trusted too much. six years later I had to have re-fusion, and five levels done. What was needed the first time around was not addressed. That is what I worry about with you. You arn't getting enough information from your physicians to make an informed choice. Where are you located? Wait time where I live in Fla. isn't too long. Are you in Canada? I know the system is slower up there.
Would you travel to another location to perhaps a better doctor?
I know one thing, this stuff hurts physically, and then you deal with the depression over hurting. My second neuro was fab. never met a better guy, or one more actively involved with a patient. I had complete trust for that second surgery, and it turned out OK. I am three years out, and in pretty good shape. Not perfect, but alot better. I so hope something good developes so you can get the proper help. I am here to yak to, and throw some ideas around. You should not have trouble getting your records. ginnie

[StrongerMan]

I called the neuro office back today because they never called me back. I told the receptionist I was disappointed. She said the nurse already left the office and she would call me back on Monday. I won't hold my breath. I really think I want a spine specialist. I am in eastern PA and am not sure if I should look into an orthopedic clinic for spine or stick with the neurologist I have and get a referral to one of their docs. All things equal, I'd rather shoot for the convenience of a local dr. and if they should recommend surgery, then seek the best I can find for that. I'd be willing to travel to Philly if it was worth it. Or is it better to stick with everyone under the same branding, if you will? I guess I thought wrong that a neurologist would be motivated to investigate neurological symptoms with some higher level of concern and urgency. I don't enjoy the lack of sleep, muscle twitches, dysphagia etc.. and the resulting reduction in my quality of life any less than someone who is crying in pain in bed. And I am not seeking out a neurologist for fun. And not knowing is the big kicker, of course. I will try to post the images but I don't quite know how to get them off the disc and I couldn't find a way to create albums in my profile page on here.

Thanks again

[StrongerMan]

Anybody know when I'll be able to create albums and post pics on my profile page?

[mrsD]

Originally Posted by StrongerMan

Anybody know when I'll be able to create albums and post pics on my profile page?

Soon. All new members are watched for a brief time to weed out spammers or others who would take advantage of NT and its posters. Just keep posting as you are, and the options will
automatically open, soon.

[StrongerMan]

I have uploaded 4 original images in sequence from my C-spine MRI. To my untrained eye there appears to be compression at c5-c6 level with slight herniation. Also seems to be a loss of lordosis. My thecal sac anterior to spinal cord seems very narrow. Is this due to some spondylolisthesis at 5-6? Or spondylosis (bone spur) there? Yes, I have seen much worse imaging. But I do know that some people can react to various abnormalities very differently. I have included 2 images showing a supine mri and an upright mri done of the same person indicating that spinal cord irritation/contact may be missed with the former. These are not of me.

Thanks for any comments.

[ginnie]

ask for leesa to take a look at your MRI. She is the best on the sight for interpretation of the results. I can do it, but I am not as good as she is. I know she would do this for you. ginnie