What is wrong with me?

[Linda09]

I stretched while lying down and my neck bent in a weird position & felt bad pain that started at the bottom of my neck & went up into the base of my head.Felt like something tore.I had the pain for a couple of days when the pain stopped numbness in the lower half of my face & both hands started.When I lie down it goes away but upon standing it comes back.After a couple of months I went to my doctor.He gave me anti-inflammatory and muscle relaxers.After the first dose everything bad started happening.I was lightheaded all the time for 3 weeks.Instead of just my lower half of my face going numb my whole head would go numb.My arms & legs are weak.I felt a lot of pressure in the base of my skull.I developed vertigo.If I tipped my head back I would feel electrical shocks in the back of my neck.I hear tones in my head.I am having muscle spasms in back & neck.My blood pressure is effected & heart rate.MRI of my cervical spine shows herniated disk at C4&C5.Minimal degenerative spondylosis spurring anteriorly off several levels at the mid to lower cervical spine.I had blood work nothing showed up.I went to a neurologist and neurosurgeon they both agreed no surgery and that the disk would not be causing my symptoms.They didn’t know what was the cause of my symptoms.Had EMG which showed the nerves were ok.Brain MRA carotid atery both ok.Upon awakening if I move my hand it starts a chain reaction of muscle constricting that goes into my neck causing more pressure and discomfort in the base of my head.I can't sleep,can't lay on my back.I feel & hear heartbeat in base of skull.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   The signs and symptoms that you describe are consistent with a possible sponataneous intracranial hypotension with sencondary chiari malformation.  Spontaneous leaks occur (usually along the nerve sheath as it exits the spinal column) and cause the brain to "sink" down into the foramum magnum putting pressure on the posterior fossa structures with possible kinking of the cervical cord.  This can cause many of the symptoms that you describe.  I would recommend a lumbar puncture to measure your CSF pressure (Normal is 10-20 cm H2O).  I would also recommend a CT myelogram to evaluate for the site of the possible leak if low pressure is confirmed.  I would ask a radiologist to evaluate the positioning of your cerebellar tonsils on your MRI.  If diagnosed, CSF leaks can be fixed by a blood patch or by surgery if a specific site is found.
I hope this has been helpful.

[rcs2]

Hi Linda, sorry for all your problems...

I have a lot of non-specific neurological symptoms, but I don't have weekness. It's really hard to jump from doc to doc and having a lot of exams done without seeing a light in the end...

I understand what you are going through.

I have a question to you, why did you have a carotida exam? I see that a lot of people that have neuro symtoms have it done and couldn't find out why.

Thanks and keep strong! :)

[Linda09]

They did it because of the numbness in my head. They were making sure the blood flow was good.

[Kathi49]

You are welcome.  I can smile about it now but, boy, at the time I never had such incredible pain in my life prior to the fusion and I am not exagerating at all!  I know I sound dramatic here but seriously, when they used to ask me to rate my pain from 1 to 10, I would tell them, "It is off the charts!"  Even this C5/C6 pain is not even close to the pain I had before.  I sure hope you and the original poster can find out what is going on.  This stuff is not easy to deal with.  And thank you so much for the well wishes.  I know I have done this before, but with any spinal surgery it is a little scary.  Yet, then again, I know what I am facing and know more about the recovery period now.

[mike1105]

linda---- it may be hard to believe but in the absence of positive test findings, and considering the way you described the onset, your problems may be muscular. neck muscles are many and very intricate. iwhen one is in spasm (guarding) everything gets out of whack and the symptoms can be many. I'd see a good muscular therapist. check out john barnes in pennsylvania.

[Kathi49]

You might want to ask your doctors too about occipital neuralgia and/or cervicogenic headaches.  I went through this for 3 years before they found the culprit in my neck (C3/C4).  Anyway, my symptoms were severe pain in a "ram's horn" pattern from base of my skull and up around my ears.  I also felt electrical jolts or shocks periodically throughout the day. I had vertigo and even had hearing tests done.  I, too, was on anti-imflammtories, muscle relaxers, etc. and they never worked for me. I tried PT, accupuncture, traction, etc. Neurontin helped but only a little and made me very sick.  I could hear my heart beat in my ears which was really weird and my blood pressure and heart rate were elevated as well.  But I think that was due to the meds and the awful, severe pain.  You say your EMG was okay so it may very well be that the muscles are contracting to guard your neck and just making the conditions in your neck worse.  If your surgeon and neurologist say that the disc(s) are not causing the problem, I find that a little odd especially since you say it is herniated and you have spurring elsewhere in your neck.  Maybe they are saying you just don't warrant surgery.  In any case, whether is it muscles or nerves, you could try alternating heat and ice or cold packs on your neck.  Just don't keep ice on it for a long time. I used Biofreeze as well and got a good cervical pillow.  I also would take a Darvocet just to take the pain down to a bearable level.  I know what it is like not to be able to sleep and I can't begin to tell you how many days I missed work because of it.  I thank God I had an understanding boss (his wife had the same thing going on).  All I can say for now is NOT to do anything chiropractic until you can find out EXACTLY what is going on and be careful with stretching.  You could try massage therapy but I learned too, to have them only to do the trapezius and rhomboid muscles and to stay away from the occipital region.  Massage therapy helped to eliminate some of the spasms for a short time and so did trigger point injections into my scalp.  Hang in there, I know this is extremely painful.  And again, I am only saying these things because my symptoms were similar to yours.  I was told that anything going on in the neck could cause this type of pain.

[rcs2]

Hi Kathi49,

Sorry for your problems,
Just curious, did you have weird sensations on your face as well? All my docs say that if you have a problem on your spine, it can't cause you problems on your face.
So, after you found out what you had you got better??
Thanks

[rcs2]

Hi Jenny,

I think we've met in other thread before! :) Thanks for your support...
I'm trying everything I can to find out what I have. Can't count how many docs I saw... But you are right, we can't let this destroy our lives, who knows how long it will take to found out what is going on???

Hope we all can find answers soon !! :)

[Kathi49]

Hi,

What actually got me better was to have a cervical fusion (ACDF) of the C3/C4.  It is such a very long story but basically my first Neurosurgeon would not do any surgery until he saw neurological deficits.  I tried to explain that the pain was up the back of my head.  For a long time I went to a pain management clinic where I received trigger point injections and facet injections and medications.  But, they never really hit on the C3/C4 (that is another story too).  Anyway, yes, I had some tingling around the jaw line and sometimes in my cheeks.  But the severity of the pain was always from the occipital region up over my ears with those electric shocks and such.  I then heard of a spine group here in town and switched over to them.  And I thank God I did.  The C3/C4 was in bad, bad shape and they caught the culprit right off the bat.  After the fusion the headaches, pain, migraines, etc. were totally gone.  I won't kid you though and say recovery was easy because it wasn't.  I had a "honeymoon" period there where I had no pain at all.  But then the muscle spasms hit but it was in my shoulders.  So, massage therapy got rid of that with just a couple of selective nerve root injections.  Then, that was that.  No more pain.  But keep in mind too, I had and still do have a bad C5/C6 which I am scheduled for a fusion this Friday.  Anyway, this may or may not be what the original poster has.  It is just that I have been through about 6 years of this stuff and the nerves from disk or neck issues can cause a whole host of problems and symptoms. So, whenever I hear of someone with a herniation and having the symptoms similar to my own, I usually think of nerves being irritated in the neck.  And, in my own case from arthritis and bone spurs.

[rcs2]

Thanks a lot for your comments. It's really helpful exchanging these informations. I remember I read something similar to what you went through in this forum, but could never find it again.
Hope

[rcs2]

sorry, hit post comment by mistake...

Hope everything goes well on Friday, will be praying.
Thanks! :)

[pick]

i have been reading everyones comments and problems i feel for each and everyone of you can somebody out there give me there,feedback on this was recently diagonosed with ms however my mri and cervical mri had some white matter my blood work was fine and i have no symptons of ms but i am having a problem walking only my right leg is stiff the only pain i get is in my right knee i was diagnosed with perphiral neuropathy prior to the ms diagnoses i am never fatigued and the sun the heat does not effect me. any suggestions?

[rcs2]

Hi Pick,

I'm sorry for your problems.

I know probably (as all of us) is tired of doctors, but in my opinion it's always good to have a second opinion. I would see a neuro (MS specialist).

As far as I know, to have a MS dx you have to have more the 1 lesion separated (in location and time), also they combine the MRI findings with the clinical manifestation, you have to have more than 1 realpse separated in time.

The most confusing part to me is that there are so many "types" of MS, that probably this is not a rule without exceptions.

As I said, if there is still any doubt in your mind, grab all your exams and get a second opinion.

I know that a MS dx is something hard to deal in the beggining, but believe me, not knowing what is going on with your body (like my case) might be worse...

Hang in there,

Good luck

[Kathi49]

Hi,

Just thought I would give an update since I can't seem to be able to post lately.  Anyway, I had my C5/C6 fusion done last Friday and it went well.  I have to laugh a little because it was the right arm that always hurt and now it is the left one!  But they did tell me that they drilled out some bone spurs on the LEFT side at the same level.  I did have some pretty bad muscle spasms afterwards; left side only but they are calming down now some.  The tingling, burning, etc. is totally gone in the right arm and hand too.  So, as soon as I am able, I will attempt to come off the meds (Norco and Klonopin) and see what happens as far as the neuropathy/radiculopathy goes in my legs, etc.  Right now I am feeling pretty good and don't have any burning or aches and pains in my legs or ankles that I had before.  But it is probably the meds helping. Anyway, I am glad this is now over and I can get on with recovery. :)

[rcs2]

Hi there,

Good to hear your surgery went well.

Hope you recover fast!!

[missmellie]

Please test for ankylosing spondylitis, i have it and it can cause tingling in the face, this is a chronic form of arthritis, a genetic disease, affects joints ligaments tendons throughout body. tingling numbness burning, rib pain chest pain.  thoriac cervical and lower back. it is a disease where the spine fusses together, in women it goes by without being detected becasue it generally is seen in men 3 times more, i have it im female 36 years old, gone through all the tests, could have gone mad, but found good rheumy who did a test for the HLA 27B and it was postive.  after clinical diagnosis and being positive for the gene i was finally diagnosed after 10 years of suffering. it affects people differently unfortunately for me i have a severe case and have not responded to conventional meds.   but if i can give any one advice out there who has had loads and loads of tests like i did and spents lots of money a test that costs about $150 could be the answer to your prayers.  It was thought i had lupus, MS etc this is a progressive disease in women they don't get the fussing as bad the hips sciatica is generally a warning sigh in the early stages.  good luck i hope you all take heed to this message as sometimes the message that is sometimes overlooked becasue your like nah that';s not me but as I said becasue this is a disease that affects the spine and is different in each person your symptoms can be in other areas of the body it just depends on where the damage is!
god bless

[30mmavenger]

I too have experienced very similar symptoms. Started with pain in back of head/neck and then the numbness started. It was aweful. The pain isn't as bad as it was then but the numbness is just discerning. Not knowing what is happening is the worst. After that, I tensed up. My shoulders and upper back muscles would spasm. Went for ultra sound waves and that eased it but they still get sore. The numbness comes and goes. Sometimes in my left upper lip area and then the worst - in my whole head! Face sometimes. Now it is in the calf area (one, sometimes both) and at times in buttocks. Sore ribs and back. Wasn't able to blow my nose like I once use to. Had a feeling of plem build up in throat. Felt like all mucus had stopped. Have all use of limbs but the numbness/heaveness is concerning. And when I have the numbness/tingling in the head - it so depressing. I also have the vertigo symptoms at times too. All of this comes and goes, but not one day has been perfect. I have been going through this for 2 months now and no answers. Have had blood tests, xrays of neck (shows slight arthritis) and chest all have come back fine. Testing for Lyme and waiting on those results. Don't think that is what this is but want to rule out all possible causes. Family doc sent me to an internist but I believe they are not moving quickly enough for me. Have a CThead scan set but that's not for another month! I really believe I need a neurologist and I believe the CT scan should be more then just the head. A pinched nerve? Something to do with the nasal? Maybe what the doc said in the post. I am at a loss of what is happening. All I know is I want my life back!

[txguest]

In the late 1980's I was diagnosed w/CFS and Fibromylgia (fibromyalgia). I have been treated for depression. For almost two years now I have had a lot of new unexplained illness. I have for the most part normal labs with a few small discrepencies. I have numbness and pain in my arms and hands but my main complaint is the severe mouth pain. For a long time I couldn't find an adjective to describe the pain and searched endlessly on the web looking for answers. I finally found out about BMS (burning mouth syndrome) and while that does describe to a degree my problem it goes beyond that. I feel like my tongue is swollen and my mouth feels irritated. I have pretty much stopped eating because it gets worse. By the end of most days my face as well feels like it's on fire. I've been to all kinds of doctors and dentists and all I get are looks of stupidity. I have been diagnosed w/Sjogren's and Raynauds both recently. I had an MRI of the brain and also a cervical MRI. According to the doctor nothing showed that would be causing me the symptoms. I am havning a Chelation test tomorrow to see if I show any heavy metals. I do have a lot of amalgam/mercury fillings as well as several root canals and wonder if I do have mercury posioning. I am a white 51yr female, postmenopause since 1999 and I've had two major whiplashes. I suffer additionally w/insomnia, dizziness,fever blisters (herpes), IBS, rapid pulse w/low to normal blood pressure. I have trouble controlling my body temp., and I have blurry vision even w/glasses????? Please if anyone can help, I've had about all I can stand......  Should I have my MRI's re-read by another radioligist??

[txguest]

Just needed to add a few things.  A finding on my brain MRI remarked that there are scattered foci of abnormal white matter signal intensity present in the centrum semiovale, corona radiata, perventricular regions, and subcortical white matter.  What does that mean??? also the report said that incidental mention is made of moderate chronic appearing right-sided sphenoid sinusitis.  Impression:  Senescent changes consisting of scattered white matter ischemic foci and mild central and cortical atrophy.  I find it curious that most of my mouth and facial pain and burning is on the left side????
On my cervical MRI the impression was:  C6-7 broad based disk bulge with annular tear signal signal left paracentral and towards the edge of the foramina????
Can anyone explain any of this to me?
Thanks so much....