If it isn't one thing it's another. For a week now I've been dealing with the torticollis headaches and spasms. The headaches from this disorder linger and my neck is always uncomfortable. My head feels too heavy to hold up and there is no comfortable position to lay down. Unfortunately, all I can do is wait until my appointment on June 15th, and hope that they try to help me. So far, this teaching hospital has done very little for me and it's making me angry.
On top of everything else, I lay in bed at 2:00 AM awake and all of a sudden I have a blind spot in my right eye. I'm looking around in the dark trying to figure out if my eye is drooping or if something is there. After making my way to the mirror partially blind in my right eye, I see my eye is not drooping and there is nothing there to see. Earlier in the evening, I had a very sharp pain in my right eye. I've had this several times before since being diagnosed with Sjogrens and have informed my PCP and rheumy and they do nothing.
The nurse practitioner that I saw last week put in a referral to the opthalmology clinic but of course I haven't heard anything, and honestly I don't expect to. I don't know what I have to do to make doctors take me seriously and listen. Perhaps all they understand is someone with a nasty, demanding attitude.
The doctors are treating the torticollis ie., cervical dystonia or spasmodic torticollis, like it is a cold when in fact, it is a serious neurological disorder. I don't know what to do. I have so many symptoms at this point I am depressed and feel helpless.
Any advice at all from friends who understand would be greatly appreciated. I am at my wits end! :'(
I understand your frustration with the healthcare that you are receiving. I have been there and done that and am in the midst of dealing with the same problem with my husbands health care. The USA is in the midst of a healthcare emergency that has been many years in the making and only made worse by certain events in the past couple of years. The doctors aren't happy, the insurance companies aren't happy, the hospitals aren't happy and the patients sure as heck aren't happy.
The only thing that I can tell you to do is to get on the phone and call people and rock their boat. The only way to get things to happen is to make them happen for yourself. The healthcare system is overwhelmed with a ton of sick patients. I know this sound like a cop out, but it isn't. I am a registered nurse, retired, and some of the reason the healthcare system is overwhelmed it the huge increase in technology that has resulted in many new diagnoses and treatments. The healthcare system has outgrown the ability of its staff to deal with it. Too many sick people with chronic, debilitating, complicated problems.
The only way to get help for yourself is to keep on knocking on doors. I have been ill since around age 20 and diagnosed with Sjogrens at age 60 and more diagnoses AID in the next couple of years. It was a long, long road for me and there were times I truly thought I would die undiagnosed. That made me mad and I just kept on making calls and seeing doctors until I got answers. I know every clinic and hospital within 100 mile radius in my area including the university system. Every time we see a new doc we take a chance and every time we see a new doc we increase our exposure to more doctors. Eventually, all this expense and inconvenience and suffering can send us in the direction of a doc who can help us. There is no easy answer to our problems and all we can do is take a couple of days off and rest and then get back on the phone.
I would advise you to see an immunologist if you have not already done so. This can send you in another direction that may be more positive. Also, immunologists have a whole different catalog of "ologists" that they use. Not all specialists are tuned in to the autoimmune aspect of disease and the immunologists know the ones who are more "in the know". Good luck. Irish
Hi
If I suddenly developed a blind spot in one eye I would head for ER. I am lucky that I live within 2 miles of a dedicated 'Eye Casualty' facility and I don't know your situation. Sight is too precious to mess with though. I think you need to see an opthamologist urgently.
Take care - Scottie
I think Scottie is right. The vision is not replaceable. There should be an ophalmologist clinic that will see emergency issues in their clinic. Many times they have one doc who does the emergent cases of the day.Good luck. Irise