Mayo Clinic Connect
Can someone help me.undersrand what this means. I am so confused and cant get ahold of anyone to explain it too me. Ive googled things but its all confusing thank you so much
@melissaeckert2018 I can certainly understand why you are upset about the ANA titer and not hearing from anyone. I, too, am in the same position. I had an MRI on Friday and I got the report thru the portal but no word yet from the neurologist. Aaaaaagh!
Welcome to MayoClinicConnect. We’re an online community of volunteers that shares many things and looks for answers. We don’t have all the answers, but we try to direct you to the people who can help. And, eventually, you might be able to help others!
What led you to getting the ANA titer done? Did your doctor suspect anything?
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Hi @melissaeckert2018, One of the better sites that I've seen to help understand the tests is the Lab Tests Online website. Here is some information on the Antinuclear Antibody (ANA) Test – https://labtestsonline.org/tests/antinuclear-antibody-ana.
Here's another good site – Patient education: Antinuclear antibodies (ANA) (Beyond the Basics): https://www.uptodate.com/contents/antinuclear-antibodies-ana-beyond-the-basics
Hope this helps
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Many years ago when I was searching for "cures" or at least a diagnosis of my problems, I went to a rheumatologist and heard nothing for a month. I finally called and he did call me and said my blood work indicated I had lupus, but since I did not have the symptoms of lupus, I did not have it. He then said he did not know what my problems was. It is truly frustrating to not get any answers and certainly not in a timely manner. I gave up until I made the rounds of a medical center here and they were no help. Then we did make the two trips to Mayo and no help there either. My symptoms have changed and I just do the best I can each day. Some days are not good, but I tell myself I am still blessed with a good husband and dog. I wish you the very best in finding an answer.
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Ask if anyone here has a great Rheumatologist. I'd travel, if I had to do so. I see Nadera Sweiss at University of Illinois, Chicago. Don't give up.
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@joybringer1 Your posting bothered me. You’ve not gotten an answer to your problems?? Are the symptoms really bothersome? What is happening?
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Thank you for your concern. My symptoms changed through the years. I went to Mayo because I thought all my burning sensations and "zingers" as I called the electric shocks going through my left arm, were related. I could not stand to be touched and often had extreme itching in my legs. I did not walk very well. Mayo was no help. So, I jumped off the medical merry-go-round and some of these symptoms changed. My burning mouth syndrome/disease was terrible. I mentioned to my dental hygienist not to grab my tongue and told her of those problems. She asked my dentist about it as they both remembered a patient with similar problems. They came up with the name of the head of oral pathology at our local university's dental school. I placed a call to him, but did not hear. Finally, I remembered we have an acquaintance who teaches in the school. I asked him about the doctor and he said "Call again and use my name." That worked! I immediately had an appointment. He told me he only had one med to recommend and that is Clonazepam. He wrote a prescription for three per day and said I might not be able to take that many. I am small and only took two at first. In the beginning, the RX made me sleepy, but I became accustomed to it and it really changed my life. I was able to eat again. This doctor was so kind and even came out to meet my husband and I never received a bill! Of course, I wrote a thank-you note. Now my biggest problem is lichen sclerosis/vulvodynia. I seem to have that all the time. I also have piraformis syndrome and have been through PT for that. I apply an ointment everyday. I have the usual geezer stuff: arthritis, bursitis, etc. Cortisone injections in my hips helped. My PCP gives me Hydrocodone which I don't take very often. He also prescribed amitriptyline (10mg) at bedtime for my burning scalp. Aren't you sorry you asked? Seriously, I do appreciate your concern. My husband reminds me that doctors do not know everything and some problems just can't be solved. Based on some of the other problems I read from others, I think I am doing as well as can be expected. Thanks again for your concern. Peace!
@joybringer1 Nice to meet a fellow lichen sufferer!!! I am lichen planus. I first had it about a year and a half ago. Started on scalp and kept on going until between the toes. I was diagnosed because a dentist stopped doing a routine filling because I was crying so hard. He also noticed an odd sore on my lip (he couldn’t see any of the rest of my body since I’m always cold and bundled up.) He referred me to oral surgeon since he thought the sore could be cancerous. I never connected what was going on in my mouth with what was going on in my body. After months I saw a dermatologist who told me I was using wrong soap and gave me list I could use and to follow up in 6 months. At the 6th month mark I went back and he said to give it 6 more months. a Someone gave me the name of an awesome dermatologist and they did a punch biopsy on an open lesion and there you have it. It’s really gross trying to get that cream on your nether regions but this is the new normal! Nice to meet you. My name is Jen
I looked up lichen planus and after reading how long you dealt with this, my heart really goes out to you. I guess our diseases are in a same group, but mine is confined to one spot. As for applying cream to the nether regions, are you aware of a product that would help with this? It is rubber finger protectors. I purchase mine at CVS because it is nearby. You probably use a different cream. I use halobetasol. I go to a gynecologist for my condition. I am glad you found a dermatologist to help you with your problem. Take care and stay safe. Peace.
@joybringer1 Thanks so much for your kind words. I have different prescription creams depending on where the breakout is lips, face, body, privates. I’ve heard of the rubber finger product. I think I’ll treat myself with my next drug store order. I’m almost completely agoraphobic so order everything on line and am careful in my ordering so I never pay shipping. I hope I never have another outbreak like that first one. It looked like the chicken pox I had in high school and was everywhere but my face, neck, and hands. Which is fine since I’m always all covered up I’m so ashamed of my weight gain from the Seroquel I was on for a year. It’s nice to be able to talk to someone who knows what it’s like. Hope to talk again soon. Jen
Oh gosh, Jen, having chicken pox in high school must have been terrible. I had chicken pox and mumps at the same time when I was a child. My grandmother sent flowers to me and I felt special even though I was so ill. You should not feel ashamed of your weight gain owing to taking Seroquel. After taking steroids for 1 1/2 years, I gained weight, but have lost all but 3 of those pounds. Losing weight is not easy and especially being at home with the pandemic going on, but when you feel up to it, you could try some exercises and there are lots of recipes to help lose weight. We have a friend who was ashamed of her weight and we did not see her for years. Finally, she has put that behind her and after she lost weight, we could see her. She is a delightful person and we had missed her so much. Good luck and I send good wishes for a better future for you.
@joybringer1 Thank you so much for your kind words and caring enough to respond to me. In the scheme of everything going on it is so shallow that I think of weight. I’m beginning to think I can only focus on one thing at a time and weight shouldn’t be one of them. It started early in life though. In my junior year of high school I was anorexic for about 5 years and then another 5 years going back and forth between anorexia and bulimia. I have no idea why it stopped. It certainly wasn’t the terrific therapy they had. One of my more recent therapists told me she lost the most patients to anorexia and it is rare for someone to just “stop”. How weird I could heal that illness but now this anxiety is whooping my butt.
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