As strange as this sounds -- what does it mean to have Arthritis of the brain? I went to the Cleveland Clinic and their final diagnosis was "Arthritis Neuropathic Neuritis of the Brain" -- another name "Arthritis of the Brain". What does this mean? What can I do? They've given me anti-seizure drugs to help control it. I have a headache that could melt lead. This sounds so bizarre to me, how can this be?
Arthritis: "Inflammation of a joint, usually accompanied by pain, swelling, and stiffness, and resulting from infection, trauma, degenerative changes, metabolic disturbances, or other causes. It occurs in various forms, such as bacterial arthritis, osteoarthritis, or rheumatoid arthritis."
Neuropathy: "Neuropathy, strictly speaking, is any disease that affects the nervous system. In common usage, however, neuropathy is short for peripheral neuropathy, meaning a disease of the peripheral nervous system.
Aside from diabetes (see Diabetic neuropathy), the common causes of neuropathy are herpes zoster infection, HIV-AIDS, toxins, alcoholism, chronic trauma (such as repetitive motion disorders) or acute trauma (including surgery), various neurotoxins and autoimmune conditions such as celiac disease, which can account for approximately 16% of small fiber neuropathy cases. Neuropathic pain is common in cancer as a direct result of the cancer on peripheral nerves (e.g., compression by a tumor), as a side effect of many chemotherapy drugs, and as a result of electrical injury. In many cases no apparent causes can be found, in this case the neuropathy is "idiopathic" meaning no cause is found."
Neuritis: "Inflammation of one or several nerves. The cause may be mechanical, vascular, allergic, toxic, metabolic, or viral. Symptoms — tingling, burning, or stabbing pains with sensory nerves and anything from muscle weakness to paralysis with motor nerves — are usually confined to the part of the body served by the inflamed nerve. In Bell palsy, facial nerve inflammation causes a characteristic facial muscle distortion. Analgesics can relieve the pain. Once the underlying cause is treated, recovery is usually rapid but may be incomplete in severe cases, with residual motor and sensory disturbances."
These three words don't work very well together to form a diagnosis. The brain has no joints, so cannot have arthritis.
"Anti-seizure drugs. Although the reason is unclear, some anti-seizure drugs, such as divalproex sodium (Depakote), valproic acid (Depakene) and topiramate (Topamax), which are used to treat epilepsy and bipolar disease, seem to prevent migraines. Gabapentin (Neurontin), another anti-seizure medication, is considered a second-line treatment agent. Taken in high doses, however, these anti-seizure drugs, depending on which one you take, may cause side effects such as nausea and vomiting, diarrhea, cramps, hair loss and dizziness."
The prescription, along with your killer headache, makes it sound like your diagnosis is migraine headaches. Did the Clinic put your diagnosis in writing? What with all the ~itises and ~othapies and so on, it's easier to mangle one than to get it right.
I am trying to get all of the records (hospital and doctor's notes), it has been almost 10 business days and still nothing. Though they keep telling me 7-10 business days. While I was in the hospital and they were finally convinced it was not cancer or a tumor they gave me an intervenous drug for anti-seizure. It gave me the worst headache of my life, as least I thought it was at that time. Then put me on Depakote for 2 weeks (tomorrow is the last day). I am also taking Neurontin, just started taking that yesterday, but I don't think it is making much of a difference. The Neurologist prescribed it on Tuesday. She did not have any of my records, so it makes me sort of worried of how could she prescribe something without knowing what it is.
I am also see a Rheumatologist. She is trying to get all of my records so that she can determine the final diagnosis because I told her that this does not make sense to me. (I like her.) The Neurologist doesn't seem to care much. My biggest problem is that whatever this is, it is affecting my eyes. I'm having a really hard problem seeing. Everything is blurry and to move my eyes is very hard to explain. The head hurts like you would not believe and my right side of my face today is numb from forehead to jaw. At the clinic they told me it is not a migraine. I am so confused. It is very hard to explain how it feels. Everything, I mean everything, feels swollen and it seems like there is nothing I can do for it. The doctors did not know if the numbness was small seizures. I really don't know what to do or to ask anyone. So, any help would be greatly appreciated.
Have you been tested for Celiac disease? I was recently doing some web browsing on it and it can cause an array of neurological and neuropathic problems. Often times people go asymptomatic. No one has neurological problems from nothing, there has to be something causing this and there has to be answers. Hope you find what you need to know. Good luck!
Last edited by Krisally; 04-29-2007 at 05:15 PM.
Reason: I guess I don't know how to write.
May be too late to help, but Temporal Arteritis (also known as Giant Cell Arteritis) causes the symptoms you describe. The blurry vision is a BIG concern too. Irreversible blindness results from GCA if not treated early with 60mg prednisone daily! I have GCA and the accompanying Polymyalgia Rheumatica. They are auto-immune inflammatory conditions and there is treatment.
i was just diagnosed yesterday with arthritis of the brain. i have the severe head pain. a few weeks ago the neuro diagnosed it as occipital nerve neuralgia. i also have the pain in my face and the feel my skin is burned at my hairline on my forehead and at the base of my skull. i am incapacitated and barely holding my job. my neuro says " you can work"...wish he would try it. the neuro gave me 4 shots in my head and 4 in my neck 3 weeks ago. it helped for 4 days, the soreness from the injections was substantial. this constant headache, since august, is about to break me down physically. i am spent. i am having a sleep study sunday per the neurologist and he says that if in fact i have sleep apnea, which i am sure i do, this could dramatically affect my headache. i need some relief. just wanted you to know you were not alone.
My understanding is that at least some forms of arthritis may be caused by, or associated with a bacterium called Mycoplasma, which is apparently known to feed on lipids ----which are apparently a huge component of our brains. What would be more logical than to look for this stealth pathogen in the brain.
I have yet to find a doctor who is open to the idea that arthritis could be some form of "biological attacker", though many will admit that certain antibiotics in the erythromycin family (Specifically Minocin/Minocycline) work for a while.
I have found non-drug approaches that make a major improvement, but have been unable to get back the last 10 - 15% I had immediately before my arthritis "flare." I can tell you that my "flare" put my brain in major problem, as well as barely being able to walk, and the treatment has gotten rid of most of the problem --- but Mycoplasma has been associated by some researchers with ADD and ADHD --- and while that is better, I can't seem to finish getting rid of it --- to my substantial distress.
To me, it's worth the assumption that there could be such a thing as "brain arthritis", that it could be something like Mycoplasma feeding on the lipids in my brain, and if I could kill it, I could get my brain back. I know about SPECT brain imaging and subsequent treatments for problem areas including those where ADD apparently resides in the brain. But it makes sense to me to check out identification/diagnosis/treatment of stealth pathogens in the brain ---- look for the cause before treating the symptoms.
Can anybody help? Anybody got information, ideas. One post in this thread stated that it was impossible to have arthritis in the brain --- because it has no joints. I hope that person will read up on Mycoplasma and find that it is a cell without a cell wall, and can hide in any cell in the body --- what better place than where it can get what is apparently one of it's favorite foods ---- lipids in the brain?