Dear Ellie:
Your physicians are correct in that you are young to have Temporal Arteritis. One must be careful to give someone this diagnosis in that there is overlap with a more benign entity named polymyalgia rheumatica (one differentiating symptom is that the latter has severe aching in the proximal muscles of the shoulder and hips. Steriods are the treatment of choice. Since having vision symptoms put you into an emergency like situation, I would imagine that your physician has already put you on prednisone. You will likely be on the medication for awhile, probably months. The biopsy is useful but can be negative, even in the light of having the disease. We think that the autoimmune disorders/vasculities have a genetic component, but it is not strictly genetic and there are multiple factors involved. Early stroke can be a sign of this disorder, but there are many things that can cause early stroke-such as an aneurysm. Aneurysms can be inherited but again we are uncertain of the genetics and environmental factors involved. I think that you should sit down with your primary physician and talk about what is going on. Rule out the more benign entity and if you truely have temporal arterites, then stay on the medication.
Sincerely,
CCF Neuro MD
hELLO,
I HAVE BEEN GOING THRU IT SOUNDS ALMMOST LIKE THE SAME **** WITH THE SAME TYPE OF DOCTORS??????? THEY MAKE IT SOUND AS IF YOUR DYING AND WHEN YOU SEE YOUR SURGEON HE WILL SAY YOUR ARE OKAY &
GIVE YOU MEDS THAT MIGHT OR MIGHT NOT HELP??????? I RAN AROUND SINCE 1979, AND KNOW I FINALLY FOUND A DOCTOR THAT WILL RUN PROPER TESTS, DOES ANSWER YOUR QUIESTIONS, AND HE WILL FIND OUT WHAT IS WRONG WITH YOU AND IF HE CANNOT HELP YOUR HEALTH PROBLEM HE WILL SEND YOU TO A DOCTOR THAT KNOWS WHAT TO DO!!!!!!
BELIEVE ME, I TRUSTS THIS DOCTOR, WHERE DO YOU LIVE???? HE WILL SEE AND HAS SEEN PEOPLE FROM THE NETHERALNDS,FINLAND,ALL OVER FROM FOR TO NOT #####1-410-653-2403******NELSON HENDLER IT IS WORTH A TRY OR ASK TO SPEAK W/HIM AND SEE IF HE KNOWS SOMEONE CLOSE TO YOU SO YOU CAN STOP RUNNING AROUND AND WASTING YOUR LIFE AND YOUR HEALTH ON A *** THAT DOES NOT KNOW WHAT IT IS AND MAKES HIMSELF AND YOURSELVE LOOK LIKE A FOOL??/./ DEBBIE
hELLO,
I HAVE BEEN GOING THRU IT SOUNDS ALMMOST LIKE THE SAME **** WITH THE SAME TYPE OF DOCTORS??????? THEY MAKE IT SOUND AS IF YOUR DYING AND WHEN YOU SEE YOUR SURGEON HE WILL SAY YOUR ARE OKAY &
GIVE YOU MEDS THAT MIGHT OR MIGHT NOT HELP??????? I RAN AROUND SINCE 1979, AND KNOW I FINALLY FOUND A DOCTOR THAT WILL RUN PROPER TESTS, DOES ANSWER YOUR QUIESTIONS, AND HE WILL FIND OUT WHAT IS WRONG WITH YOU AND IF HE CANNOT HELP YOUR HEALTH PROBLEM HE WILL SEND YOU TO A DOCTOR THAT KNOWS WHAT TO DO!!!!!!
BELIEVE ME, I TRUSTS THIS DOCTOR, WHERE DO YOU LIVE???? HE WILL SEE AND HAS SEEN PEOPLE FROM THE NETHERALNDS,FINLAND,ALL OVER FROM FOR TO NOT #####1-410-653-2403******NELSON HENDLER IT IS WORTH A TRY OR ASK TO SPEAK W/HIM AND SEE IF HE KNOWS SOMEONE CLOSE TO YOU SO YOU CAN STOP RUNNING AROUND AND WASTING YOUR LIFE AND YOUR HEALTH ON A *** THAT DOES NOT KNOW WHAT IT IS AND MAKES HIMSELF AND YOURSELVE LOOK LIKE A FOOL??/./ DEBBIE
I was just diagnosed with one of those similar type diseases, periarteritis nodosum. But I have a lump on my right temple that was removed and came back (biopsied as a fatty tumor). But it's still a hard lump under the fatty tumor. Where are they going to cut your head?
Jacki, I had my surgery 2 weeks ago today and WOW what an experience. It was very painful. It was done in the surgeons office early afternoon and by about 2AM my husband had to take me to the ER. The pain was too much. They gave me a whopping shot of demerol, did a CAT scan, and sent me home about 8AM. I slept for about 14 hours (what a blessing) I am still having a lot of pain and headaches, but my primary doctor gave me some pain meds, so that does help some. The surgeon cut me in the head about 1 inch above my left ear. He made the incision about 1 1/2 inches long. He removed a piece of my artery and sent it for a biopsy. The results came back as moderate intimal arteriosclerosis (hardening of the arteries is what i'm told). My primary sent me for some blood tests to see what my cholseterol levels are along with a few other tests. I will find out results soon. I still have all the symptoms as before, headaches, pain in the shoulders and numbness in my arms and hands about 90% of the time. I really cant take much more. Its getting to the point where when I drive I can't feel my hands on the steering wheel. I now have lumps growing on the inside of my wrists that are painful. I have no idea what they are or why I have them. DOCTOR, is all this related??? Will the symptoms and pain ever go away. I'm too young to be going thru all of this and I'm getting really tired physically and mentally. What do you think. Thanks, Ellie