PLEASE HELP DIAGNOSE

[meeperneeper]

I've had constant neck pain & headaches for over 6 years. It is a tight, aching, burning, strangling pain. And it is constant - it is there 24 hours a day.

I've been to over 60 doctors in almost every specialty you can think of, with no firm diagnosis and no resolution. I've tried many medications - none seem to give any real relief. I've had numerous MRIs, xrays, and cat scans - all showing that everything is aparently "normal." I've also had Botox shots in my neck and back of head, physical therapy, massage, and many types of "alternative" treatments (chiro, osteo, neuro-cranial restructuring). I've had cortisol shots in my cervical facet joints and diagnotic shots in various upper vertebrae (C1 - C4), as well an epidural in my spinal cord. I've also gone the "dental" route and have seen many dentists, tmj specialists, and orthodontists. I've been fitted with various orthodontal appliances (upper & lower splints). I've traveled out of state, across the country and even out of country, searching for anyone who can help. All of these years later, I still have no diagnosis and no relief from the constant 24/7 pain in my neck and base of head.

Please help diagnose my neck problem - is it muscular, nerve damage or something else?
Please help...

[Tuckamore]

Mollyrae is not alone, as you obviously know. Finding a diagnosis can be lengthy and disheartening. It took years for me also. Finally one day a D.O. examined me and look  briefly at my previous records and diagnosed in less than two weeks what no other physician (I too saw many) could do in the preceding years.

I agree with her that you should have a copy of all your reports, everyone should request a report of each and every test they undergo. Sometimes it's so simple it is starring them in the face and is dismissed. In her case (hope you don't mind Mollyrae) her abnormal lab result was blamed on something else when indeed it was a sign of a serious condition. And if you are a smoker every abnormality tends to be blamed on it.

Certainly I am not saying that is true in your case. My point is simple, they may be over looking something that is obvious, or should be. It will only take one astute (and caring) physician to put the pieces together.

I have always kept track of and viewed my tests from lab results to MRI's I know what is normal for me. Due to my medical background I have a journal that tracks all my major illness, tests, hospitalizations, surgeries and so on. I recognize a change that may be subtle (or normal) to the physician but major or a change for me.

For example, several years ago I was having neck pain and headaches. An x-ray was ordered. The radiologist read my film as a "broken neck." Immediately I was placed in a neck brace and plans for hospital admission was made. As I sat there puzzled as to how that possibly could have occurred I took out my purse journal and saw an old softball neck injury I had forgotten about when I was about 20. When the injury occurred the rural hospital only had an x-ray that did not provide much information. But based on my symptoms they said it could be fractured and treated me as such. Because there was no MRI it was never an official diagnosis. I asked if the x-ray could be showing an old healed fracture. Long story short that is exactly what it was. Had I not had that information of that long ago "possible" fracture I would have spent days in the hospital undergoing needless tests, treatments and possible rehab.  

So please keep searching. Someone will put the pieces together for you. And please don't forget to keep in touch and let us know how you are doing.

Peace,
Tuck

[Mollyrae]

Meeper:

I have been having problems for a very long time as well. It has only been in the last month that there has actually been a diagnosis made. I went to countless Doctors for years...seen them all....Finally because of a blood test and one single test in particular (Hematocrit) was elevated. It had been elevated for a while but was thought that it was because of my smoking. Well, I quit and had the test re-done. It was more elevated than previous so I was finally sent to a Hematologist. Like I said, after many years, a diagnosis was made.

I am glad that there was a diagnosis but now face the battle of a life time. Hang in there. It may take some time but I'm confident that they will find the cause. Make sure that you get a copy of your test results. What a Doctor may think is nothing may be worth something to you.

You must be your own advocate.

Be well and take care,
Molly

[meeperneeper]

Thank you both, Mollyrae & Tuckamore. I appreciate your kind & supportive words.

Yes I have seen at least a few DOs, in state (Washington) and out of state (East coast). No help unfortunately. My pain started almost immediately after some orthodontal work - most of the many doctors I've seen believe that things were moved around to such an extent that my body could not deal with it. But nobody can figure it out. It may be a subtle change to the human eye, but a huge change to my body. My fear is that no one will ever be able to identify the cause. And medications simply haven't worked for me - and I've tried a lot of them!

The only type of specialist that I haven't seen is "vascular" - so if anyone knows of a good vascular doc, let me know.

Thanks again!

[Tuckamore]

Hi and welcome to the Pain Mangement Forum.

It sounds like you have done everything and more possible to find a diagnosis to your pain. I am so sorry that you have had to live with this debilitating pain for so long with no resolution.

Have you seen a D.O. (Doctor of Osteopathy)? After years of seeking a reason for my pain I stumbled on a newly graduated DO. She was able to diagnosed me within two weeks and now treats me through narcotics and OMT. Osteopathic medicine is dedicated to treating and healing the patient as a whole, rather than focusing on one system or body part. A DO will often use a treatment method called osteopathic manipulative treatment (OMT). It sounds strange but it is a hands-on approach to make sure that the body is moving freely. It is unlike chiropractic treatment. They believe this free motion ensures that all of your body's natural healing systems are able to work unhindered.

I am sorry that I cannot offer you any suggestions than see a D.O of you haven't already. Anything else that I could come up with should have been considered and ruled in or out through all the many diagnostic tests you have endured. What I can offer is what Mollyrae has, support. We came to this site about the same time.  It has been a life savor for me. Our members are supportive and understanding. I've learned a lot but more importantly I've learned there are other's like you are I that suffer with a painful condition every day. We are not alone....and you are not alone. That doesn't help the pain but it is a comfort and sometimes this site will distract my from my pain and the huge impact it has had on my life.

Osteopathic physicians hold to the principle that a patients history of illness and physical trauma are written into the body's structure. The DO's highly developed sense of touch allows the physician to feel the patients "living anatomy" (the flow of fluids, motion and texture of tissues, and structural makeup). It was through her examination that she discovered I have severe SI Joint Dysfunction that was later "proved" by a specialist through a fluoroscopic exam where the joint could be visualized and tested. After years of searching I had an answer. She found other conditions also that I will not bore you with but that is my major cause of pain.

Are you being treated by a good PMP. Someone that you are comfortable with and can relate to. My PCP (the DO) manages my CP (chronic pain) and without her I don't know what I would do. I wish that great doctor-patient relationship for everyone but especially those that suffer with CP.

Please keep in touch and I hope you will consider becoming an active member of our community. Best of luck to you and hang in there.

Take Care,
Tuck

[Mollyrae]

Hello Meeperneeper and welcome to the Pain Forum.

I'm sorry that you have had to suffer for so long. It really sounds as if you have seen them all for your pain. I cannot give you any other medical advise at this point. What I can give you is support. This is an excellent support forum for those who suffer daily with no relief.

Whether you want to share, vent or just put it on a screen so to speak...we are here to listen. I found this site a little over a year ago and still find it a comfort. This forum has helped me more than I can say. There are many members here who suffer like you do and we have all become friends because of our daily pain. It's nice to have someone to chat with. Who knows...Maybe you will find the reason for your pain here someday!!

Others will post as the day goes on so be patient. Please take care and give me a hollar if you'd like. Send me a personal message...I'm always willing to share stories.

Regards,
Mollyrae