You know, Mayo doctors are not God. Craig was there in the Minnesota Mayo in Fall 2006 to have his spinal osteoporosis evaluated. The doctors all saw that Craig could barely lift his legs when lying down. They told him that he was developing a neurologic disease, did an EMG and when it was normal, said to wait till it gets worse and come back.
Wow, what insight!!! So they can call everything "subjective" but if you have a neurologic disease, unless it is very obvious, they tend to like to wait till it worsens. At least in Craig's case.
I believe grannyhotwheels also went to Mayo and was not diagnosed.
Neurontin is an anti-convulsant which acts on the brain and helps it to minimize the sending of wrong messages to the nerves. In neurologic disease, the nerves are thought to have small seizure type short circuits.
Baclofen is a muscle relaxant to stop spasms. Do you have muscle spasms?? Zanaflex is also a good muscle relaxant.
THE DIFFERENCE BETWEEN OBJECTIVE AND SUBJECTIVE IS THIS:
SUBJECTIVE IS "WHAT THE PATIENT SAYS IS HAPPENING BUT THE DR CANT ACTUALLY SEE IT OR MEASURE IT" FOR EXAMPLE THE VIBRATION SENSATIONS.
OBJECTIVE IS: WHAT THEY CAN ACTUALLY SEE AND MEASURE LIKE HYPER REFLEXES, BLOOD PRESSURE, ABNORNAL GAIT.
OOPS GOT KICKED OUT THERE FOR A SECOND... SORRY. ANYWAY, HOPEFULLY THAT HELPS EXPLAIN WHY HE MADE REFERNECE TO SUBJECTIVE/OBJECTIVE. THEY NEED OBJECTIVE DATA TO MAKE A DIAGNOSIS OF MS I GUESS.....
Thanks so much for your comments. You SAID what I was THINKING about Mayo.
Yes, I do have muscle spasms - mostly in my calves, not very often but very painful and impossible to walk when it happens.
I also have "a lot" of twitching in my right eyelid - and my arm or finger will move on its own .
Also, I know this is quite common - but only in recent months I started having the jolting or jerking when I first fall asleep - last night I had one big jolt that started with my head and went all the way down my body. . . very uncomfortable & disturbing ...
I will follow-up with my GP, he's very personable and won't let me slip through the cracks!
I read the report you copied carefully. I do not think it carried any hidden message, like that your problems were all in your head. The terms "subjective" and "objective" are carefully defined in medicine. Subjective complaints are those that the patient perceives and tells the doctor about. Objective findings are those that are visible or elicitable by an examiner. That said, I found the report troubling anyway.
The conclusion that there are no objective findings to substantiate your problems may be true if, AND ONLY IF, they did a very thorough neurologic exam. This would be head to toe and would have looked in detail at:
your eyes and their ability to move and follow,
the nerves of your face, mouth, tongue and neck,
deep tendon reflexes,
strength in all muscle groups (as an example, at ALL visits my MS neuro checks 18 separate muscle groups on each side, at a minimum!),
careful sensory testing all over, incluing the face and trunk usuing at least 2 modalities (this means they used at least two of the following: soft touch, sharp/dull, hot/cold, vibration, and joint poition sense),
balance and coordination (finger to nose, rapidly alternating hand movements, heel down shin,
Romberg (standing with eyes closed),
tandem walking, gait analysis, gait speed,
Babinski and Hoffman's,
These make up the basic neuro exam. There are many more tests than I have listed which the examiner might do if abnormalities were found on the basic exam. Without objective findings it would be impossible to make a diagnosis of MS.
But, I am confused on a couple points. I can see offering a patient with severe fatigue (subjective) Provigil. I can see offering Neurontin or Lyrica for pain that appeared neuropathic, but only if that pain had been investigated with appropriate testing such as Nerve Conduction Studies or Evoked Potentials. Those are potent meds with significant possible side effects.
But, I do NOT understand the offering of Baclofen unless they observed spasticity. I can't believe they would just "take someone's word" that they have spasticity and offer to treat it. Now I do believe that if a doctor had already "pre-decided" that a patient only had Fibro, and they found spasticity on exam, that they would ignore this and still say the exam was unremarkable. My former "highly esteemed and very evil" neurologist documented spasticity in my exam, yet blithely ignored it as he implied over and over that I was faking my problems.
Poeple with Fibro do not have significant spasticity nor muscle spasms in my reading. And there should be no place for Baclofen in treating the pain of Fibro. Please tell us more about why they were so willing to treat spasms or spasticity.
Finally, in my opinion, the establishment of the Mayo Clinic, at least from my view here on the forum, is not infallible. They certainly are not medical gods. Did they advise you that an MRI in an open machine, not using MS Protocol and without contrast was not a good test for finding MS lesions - especially in the spine? Also, since they stand practically alone in advocating against the use of the Disease Modifying Drugs for early or mild MS, the Mayo would be one of the last places I would recommend someone go if they were truly concerned about MS. Personal opinion.
At this point I just read your Timeline. I cannot imagine that a lot of what you have been through is consistent with "Severe Fibromyalgia!" That is, uless they are redefining Fibro to include evidence of Central Nervous System damage and lesions.
The face pain you had in 2006 I would like to hear about in more detail. It sounds like atypical Trigeminal neuralgia. TN in its atypical form presents more with a deep constant or almost constant ache. Sometimes it may also have the severe stabbing pains. People without the stabbing pains will usually be told they do not have TN, but the literature is now quite clear (to me) that the atypical form does exist and should be considered as indicating possible MS. TN is 300 times more common in MS than in the normal population. Here is a site that you can use to see if you made criteria for a diagnosis of TN:
Do you follow a gluten-free diet? Celiac disease can closely mimic MS and cause many of the same problems, including true neuropathy.
Well, these are my initial thoughts. Welcome to the forum. I'm glad you like hanging out here!
I'll await your answers and maybe other things will be clearer.
Welcome to the forum!! I went to the JAX Mayo in Nov / Dec of last year and had brain MRI - it is a 1.5 T MAchine!!! They do not have a stronger one. I saw the neuro muscular specialist a Dr. K - the lady because my neuro at the time said I had an abnormal EMG on my left foot . She was very nice but obviously NOT an MS specialist as she stated once again "with no brain lesions you cannot have MS". What really floors me now is that she ended up repeateing my EMG / NCV but just on my right side not the side that had the abnormality. It was like they were trying to prove there was nothing wrong not that there was something wrong.
Quix makes alot of sense and tells it like she sees it. I left Mayo with a 15K bill and no real answers except "maybe post viral syndrome" and "degenerative disc disease".
Anyways, welcome and we are glad you found us!!