I would try lupus.com, see if there is any kind of study on neurological lupus. They may have a database of docs who have dealt with it more than most. I should think some of the big hospitals must have people who have more experience with this. My rheum sent me to a kidney doc because he, he told me, he needs help with the problem, but he’s been very good with the lupus, even if he doesn’t talk about things as much as I’d like. And my pp throws her hands up when it comes to the complexities of lupus, things that make sense to me. So the rheumys don’t understand the brain. Sounds like the neurologists you’ve seen don’t have even the vaguest idea of what lupus is, most doctors don’t. It’s why it takes so long to get diagnosed if you don’t have a major, major problem. It just seems that you need someone curious outside his/her field, and someone compassionate. I pray that you find someone soon.
You might possibly also have fibromyalgia, LMidg. You should not rule out that possibility either. Fibro oftentimes goes hand-in-hand with lupus. Ben's friends has a great fibro board. You might want to check it out. Fibro is a very real and very torturous illness. I know that it, too, is also classified as female depression, etc. Nope, not at all!
Hey, I only had pain from certain pressure points but it was fibro, nontheless. I'm not sure that pressure points must be present to have fibro. Mine didn't start out that way, it was agonizing pain in my back for 5 years or more until it decided to ripen into full blown fibro. Took more years to feel it in my neck and shoulders.
BUT...to quote Doc House: Sometimes it really is lupus.
I hope you have gotten a few answers by now to your questions.
Is it possible that a medicine that you are on could cause the head buzzing? I know that sometimes coming OFF of some meds, like Effexor, can cause terrible head buzzing.
Also, could you have an inner ear issue? Like a problem with one of the bones in there?
Could it possibly be from a migraine? I know that complex migraines can cause many, many problems for their sufferers.
I found a sit that talks about how buzzing could be tinnitus. If it is, you could be having a migraine. Have you ever had them? Do you know of what might trigger them? Here is more on tinnitus: http://www.merckmanuals.com/home/ear_nose_and_throat_disorders/symptoms_of_ear_disorders/ear_ringing_or_buzzing.html
Sorry, I get into a mode where I try to find help for those of us with weird symptoms.
Beatsme said:
Count me in on this. I have MCTD as well. I have weird symptoms that don't fit nicely into the Drs handbooks. I have a good Rheumy but he won't touch my neuro symptoms, which I think are totally lupus related. He suggest going to a Neurologist which I have for years. They find nothing. I've never taken a pill that resolved this head buzz. Tylenol, dark quiet room usually takes care of my headache. It's the vibrations in my head that sends me to my bed for days. I can't get any Neurologist to acknowledge what I'm describing. They see Migraine on my records and start with the pills to prevent and control pain. I take the pills to be a good patient but 10 years later I need someone to hear me. It's not the pain that disorients and horrifys me. Silent Screams
I realize that this is a very late response to this end of '14 question. I have just lost all of '15 and part of '16 emails, and this email popped up at end of the '14 emails that were left. But this particular question popped up at me because I have had years and decades of mis-dianoses in my life of 75 years now. It hurts, bad, to be mis-judged in any way.
My advice at this point is to be very pro-active in getting good medical doctors,also a good psychiatrist who believes you. All your doctors should believe you. I now have a PCP who believes me after all these years. She says she'll always "have my back" if I have any mis-diagnosis that still haunts me. She understands all the pain this has caused.
I was finally diagnosed with SLE back in '13 with my symptoms plus periodic lab test results that together pointed to SLE. After starting on Plaquenil in Dec.'13 and praying that it would stop the flare that had already caused me to have advanced glaucoma (it seems that I have CNS lupus as well as the first diagnosed discoid lupus dx by a biopsy).the glaucoma was quickly advancing to what was expected to be legal blindness by the end of '14. But when the plaquenil stopped the long-time flare in July 14 my visual field tests were suddenly stable and have been ever since!! Yay! Because of that timing, my glaucoma doc says that it is eveiidential that I do have CNS lupus since the optic nerve is part of the CNS. I also have not had an epilepsy seizure since May '14. They haven't been able to figure out what was causing those either but I was having "drop" epilepsy seizures from '11 until that time and not since. So they were caused by the CNS lupus too. I was seeing the SLE "expert" at Stanford too but she said that it was too rare to have CNS lupus. Gee, I've had lots of rare things in my life. Now that the evidence shows that I do have it, some docs still do not believe it.
I just am enjoying being flare-free. About a month ago my exhaustion had gotten so bad that my pcp gave me a few blood tests to see if maybe I was in a flare and a test that shows general inflammation (can't remember the name of it). It's normal is 0 - 4/9. Mine was 72.9. So the lupus doc immediately started me on prednisone. And I started feeling better. Unfortunately my previous rheumy changed to Kaiser and I'm waiting to see the new one in that office next month, so I don't know what she'll be like. Hoping and praying that she believes me and my symptoms. If she doesn't, my pcp will talk with her. At my age, I don't have time to fiddle around with stress-producing docs who don't believe me.
I also have a psychiatrist who prescribes my anti-depressant, and a neurologist who prescribes amitriptyline for preventing migraines. Both these docs "have my back" now too. I've had horrible experiences in general hospitals in the past five years with the seizures plus 3 hernias that were probably caused by the connective tissue part of lupus and whose pain was dismissed many times in the er before a good surgeon recognized them and operated on them and eliminated the mysterious pain, much to the chagrin of the hospitalists in the hospital who kept saying that it was just IBS!!
I hope your experiences have improved by this time.