Appointment with PCP

[Quahog]

Well I finally had my 2nd appointment with my new pcp you know the one I was supposed to have back in March but she suffered a Tib Fib fracture and couldn't see patients until now.

She really is very nice. Wants to help. Understand how discouraging it is not to have an actual Dx when there is something going on. It seems she and my pain doctor both agree that I may have MS. She says the symptoms fit. She told me that she never thought I had Lyme because my lymphocyte levels were high. Normally there low in that situation.

Is sending me to see another Neurologist. I don't know whether or not to believe i actually have MS. Personally I still think it's the disc or something related but at this point I don't know anymore.

I forgot to add that I have an appointment with a Neurosurgeon and spinal clinic at the end of this month. I am going to there to have my C3-C4 disc looked at apparently it is impinging on my spinal cord but only very slightly. A few of my doctors don't think it is a problem. I have also found what looks like ligamentum flavum hypertrophy at the C6 level
although it appears to be very slight as well. So far no one has commented on it.

http://s102.photobucket.com/albums/m92/hogle28/Spinal%20Images/?action=view&current=5C-SpineMRIFebruary212007.jpg

[Pamster]

((((Quahog))))) I am glad you got to see your new PCP, but sorry to hear that she thinks its MS. I really hope it isn't. Have you had surgery on the disc before? Did it show up on an MRI? I would think if it's putting pressure on the spinal cord that that would be why you've got the symptoms you have...best wishes with seeing the new Neurologist. I hope it goes well for you and you get a official DX sooner rather then much later. :)

[Scar Tissue]

It's good to hear things are starting to go in the right direction for you. Waiting for any test results are stressful, but hopefully and with the Grace of God you will find it is a disc and not MS. I hope the very best for you, and you will be in my Prayers!:)

[jena1225]

Hey Quahog. ((((HUGS)))) I just wanted to let you would know that I have had MS for 14 years, and if you have any questions, I would certainly be more than happy to help as much as I can.

And although MS is not fun, it's not a death sentence either, so try not to stress yourself out while you wait for your appt, if that's possible :rolleyes:

[simby]

hi Q,
glad your new doc is nice and willing to work with you. Its hard enough to have cp and not know why. It helps if your docs will at least work with you and believe you.

[jena1225]

Oh, and if you don't already have health insurance, please get it before you get any tests done!

[oh_snap]

Q
I am going to "throw" something out, that I probably have already in responding to some of your other threads...and that is, that through the years with "obvious" neck/spinal symptoms, even as a kid (after an initial MVA, then being rear-ended as a teen), any medical provider who listened to my "complaints", wanted to "pin" those symptoms on anything but the spine.

I spent over 12 years (once the spinal stuff became "more" intermittent") with chiros, acupuncture, etc.; then, when the spinal stuff became constant, chronic (causing great dysfunction), I still was told "I didn't want to have spinal issues", as though I had a choice.

For some reason, many medical providers don't want to make a spinal dx. When I was first exhibiting symptoms as a child, those symptoms were blamed on divorce, stress, anything that came to mind. At that time, there wasn't MRI. If the xray was clear, and you weren't paralyzed or comatose, you were good to go.

What did I do? I managed (youth was on my side), played sports and picked up a couple more head/neck injuries, and by the time I was 39, I was done.

Had I known that the neck "going out" was a mechanical issue, I would have made different choices, especially when it came to playing contact sports. I would have insisted on more ergonomic working conditions (when that term first arose, people who insisted on "compliance" were considered "weenies", and were blackballed for costing the company "unecessary" expense).

I honestly think that many docs steer patients away from a spinal dx for fear that they will "play into" the diagnosis, and give up, or give into surgery; go on disability; become a "burden" on the health/social system.

My experience with [some] spine surgeons/spine specialists, especially, is that they don't want to operate unless the pathology is severe and won't admit that even some pressure on a generous spinal cord is capable of generating symptoms/suffering. As for pressure on a spinal nerve, same thing, how much dysfunction is there (suffering doesn't count). If one is close to losing use of a limb, then action is fairly swift.

Remember, many of these docs have seen films where the spinal cord is displaced, crunched and the person is either dead, or wishing they were. Films which display moderate pathology are going to be viewed in that "80% of the population has the same findings, and don't have symptoms/complaints", and may or may not be taken seriously.

LobelSteve (and others) have given you great advice about correlating findings on films to your symptoms. At one point, no matter how much suffering (that term encompasses neurological symptoms, pain, numbness, etc), you may need to make the choice to line up more appts. with different docs, and get more opinions about what may be causing the worst/or most troubling symptoms.

It might be a good idea to set up more "second opinions" to follow your NS appt. While I am not usually a cynical;) or negative person, I believe in getting as many ideas/opinions/options as possible from docs when something big is at play.

I am very sorry for the length, but, the point is: You may not get the "right" answer with the first few docs that you meet with. Have a back up plan, and accept that your current circle of docs seem to want to steer you away from a spinal diagnosis. You need to recognize that, and have it in your back pocket before accepting an MS dx, or any other.

Hang in there. (my best cliche for today) :eek:

[BrokenBladder]

Quahog you've really been around the block with "possible" DX's.
I'm truly sorry that you're having to go through this. I know the frustration of pain alone, but when you add in the doctors giving you all kinds of possibilities, I know you must really be ready to scream. I would be!!
Your PCP sounds caring and its good that she's referring you to another doctor. Hang in there! They will get this figured out and we're here to support you no matter what. (((HUGS)))

[curiousforever]

Glad the new pcp agrees it's not lyme. Maybe they can figure out what it IS!

[jena1225]

OS - As I do agree with a lot of what you are saying, one thing is for sure. There is a reason they are looking at this possibly being Nuerological, and one simple MRI could tell him one way or another. It is not always that easy, but sometimes, like in my case, it can be. It


Also, when you say "...many docs steer patients away from a spinal dx for fear that they will "play into" the diagnosis, and give up, or give into surgery; go on disability; become a "burden" on the health/social system", the same exact things can be said for people with MS. Unfortnately, when it comes to those issues, you can almost put MS and Spinal issues in the same category :rolleyes:

[Quahog]

Oh Snap you took the words right out of my mouth.

I have been saying the exact same thing for years.

My years of experience in the medical field have also led me to the same conclusion. Most Doctors can not look outside the box.

The question here is when some one has symptoms that suggest there is an issue. Follow up testing should be performed.

I have been trapped inside this nightmare for 5 years now and I see no end in sight. I am on disability and have run the gauntlet of possible Diagnosis's and then some. True it is not as long as others but for me it is still a nightmare. It's funny how throughout the whole affair I keep referring to Occam's Razor.

All things being equal the simplest answer tends to be the correct one.

Too bad most Physicians don't see that way.

[Kathi49]

Gosh Glenn,

It is one thing after another. But I am glad the new PCP is sending you to the Neurologist. I will just tell you that I had a brain MRI in the very beginning because of that C3/C4 pain. My PM said they were looking for neuromas, tumors, etc. But my brain was just fine. So, see what the Neuro says or wants to do.

I am also glad the PCP doesn't think it is Lyme.

Hang in there! :)

[Quahog]

I just had a new Brain Scan (MRI) and it was normal. I am so disgruntled by this whole thing. They are telling me that I don't have any pathology. I guess my neck really doesn't count The thing is as you know there is pathology. Why don't they follow up on this to gather more information to find out if it is causing a problem. You know when in doubt check it out. Instead of basing my symptoms on diseases and conditions that are in fact rare. Personally i think because I have leg pain and low back pain is why they don't think it's my neck.

I also have Lhermittes and while this is a symptom of MS it is also a symptom of Cervical Myelopathy. No matter how much I argue these facts it doesn't matter, to them it's not my neck.

ARRRRRRRRRRRRRGGGGGGGGGGGGGGHHHHHHHHHHHHHHHH :mad: :mad: :mad:

[BrokenBladder]

Quahog I'm at a loss for words. I don't understand why everything is not being taken into consideration when you're in obvious pain. It makes no sense to me either.
I'm sorry and I hope sometime soon you can get a solid diagnoses.

[oh_snap]

I just had a new Brain Scan (MRI) and it was normal. I am so disgruntled by this whole thing. They are telling me that I don't have any pathology. I guess my neck really doesn't count The thing is as you know there is pathology. Why or why don't they follow up on this to gather more information to find out if it is causing a problem. You know when in doubt check it out. Instead of basing my symptoms on diseases and conditions that are in fact rare. Personally i think because I have leg pain and low back pain is why they don't think it's my neck.

I also have Lhermittes and while this is a symptom of MS it is also a symptom of Cervical Myelopathy. No matter how much I argue these facts it doesn't matter, to them it's not my neck.

ARRRRRRRRRRRRRGGGGGGGGGGGGGGHHHHHHHHHHHHHHHH :mad: :mad: :mad:

Q
How can your doc suggest MS if your brain scan (MRI) is clean (meaning, no lesions)? I thought that there had to be some evidence of lesions at least in the brain, then possibly within the Spinal cord. [don't know much about MS, admittedly]

As to how you "compare" to others that post here, or anywhere, there is no "comparison". Suffering is suffering, no matter the length or cause.

I think the "not knowing" [cause] is probably one of the most difficult aspects of this game. I used to be annoyed, looking back, but know, I just don't care. I do care about others that seem to be heading down this very long road. (forgive the mixed metaphors)

I stand by my claim that there is so much "unknown" about how the human body works, how disease presents and/or affects it, and how any individual "adapts" to that condition.

Many [people] go years adjusting to progressive dysfunction before it occurs to them that there might actually be something going on, and seek medical attention.

Others get caught up in the "you don't want that" syndrome that other less "heroic" docs declare when they either don't know [what the problem is] and won't admit it; or, again, they know, for example the most likely suspect is the spine, but don't want to have their "diagnosis" result in a patient running to a surgeon [at the cost of managed care.]

There seems to be a "downplay" factor applied to many conditions that must end up costing our social and health system as much as the disease/treatment itself.

I guess that shouldn't be a surprise, but, gosh, what happened to the "scientific method", where you go where the data takes you? Problem solving human conditions shouldn't be any different. IMHO.

Disease, degeneration, neurological conditions can exist in one human body, at one time, whether that person, or the doctor treating them desires this to be so.

[B]Sometimes, "whatever it is", IS. Doctors may save the social/health care system more money by recognizing health issues early, upfront and sending the patient on the right path, the first time [if at all possible].

I sometimes fear that any given opinion/diagnosis of any medical provider is hinged somewhat on their own comfort level. [comfort meaning business, paperwork, litigation, medical knowledge/specialty]. Some may be more "comfortable" giving a patient an MS diagnosis than acknowledge that their spinal pathology is indeed the most likely suspect [for whatever reason].

Now, if a person is losing the use of a limb/limbs (via weakness, numbness, etc) I think I would be an idiot to ignore/discount a possible spinal cause (in the presence of abnormal MRI studies).

While I may want to rule out MS (among other things), I think I would want to be absolutely/without a doubt sure that your spinal pathology was not the source of your ongoing/progressive symptoms. My goodness.

I kind of think that some of our conditions have to progress to the point where it is a slam dunk [as to diagnosis]. That said, the problem with letting it get to that point is that usually accompanies a "point of no return" as far as neurological problem(s). One can get to a point with weakness, atrophy (not from disuse, but neurological dysfunction), spacicity, etc. that even "fixing" the problem still leaves a person with continued deficits.

To wrap up: I do understand "that" feeling of having no control of this situation, and being at the mercy of a segment of our society that [seems] to see disease and its affect on the human body in a somewhat disjointed, piecemeal fashion, ignoring what they either don't know, or are not comfortable with. [not saying all doctors are like this]. Very frustrating.

[Kathi49]

Q,

Ditto what Oh Snap said. I couldn't have said it any better.

You see your NS fairly soon right? Boy, I would lay it on the line!

I too believe that multiple conditions could be going on. But like Oh Snap said, only a complete idiot would ignore the numbness and the things you have going on especially in light of your spinal MRI!

Anyway, you know I went down this road too and it was VERY frustrating until I found the right docs.

[Mark N]

Glad to hear your new PCP sounds willing to help. I also hope the NS looks at your cervical spine before pursuing MS. Don't let the 'slight' indentation slide by as some people have severe problems when there doesn't seem to be much going on. I had that same problem with my lumbar spine but my thoracic spine was more clear cut. My lumbar problems were just as severe even though I only had 'slight' herniations based on the MRIs, turned out I had IDD and that accounted for all my pain and symptoms.

Push your NS to check your cervical spine and explain why it is a good indicator or why it isn't a good indicator of your pain. If he doesn't think that is the problem ask if another test would show if the disk were the pain generators.

[jena1225]

Did not realize you had a clear Brain MRI already. Although it does not have to show lesions to have MS, with all your spinal problems and sx's, I am not too sure I would have pushed that route just yet either with a negative MRI. Lesions do show up on the C-spine quite often as well, so getting THAT MRI could kills 2 birds with one stone. Good luck with all of this