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Posts (9)

1 day ago · Someone help me to interpret results of anti-nuclear antibody tests? in Autoimmune Diseases

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.

2 days ago · Someone help me to interpret results of anti-nuclear antibody tests? in Autoimmune Diseases

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.

4 days ago · Someone help me to interpret results of anti-nuclear antibody tests? in Autoimmune Diseases

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!

6 days ago · Someone help me to interpret results of anti-nuclear antibody tests? in Autoimmune Diseases

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.

Sat, Sep 12 10:10pm · Autoimmune Diseases and Fatigue in Autoimmune Diseases

I feel so sorry for you. I have no idea what is wrong, but I share your disappointment with Mayo. My husband drove me there (a 7-hour drive) and we spent a week there, then home for a week, then back for one more round. I saw many doctors there and gave a lot of blood. I even gave extra blood and filled out a questionnaire for use in special research program. Once when I was giving blood the woman who was taking it said she had never seen so much blood requested. I thought I might help someone else down the line. Anyway, when I received their report I almost cried. The first diagnosis was "chronic pain."
Well, duh. The rest basically said "unknown." Weeks after I returned, I received a phone call requesting more blood. I almost laughed. I told the woman there was no way we would make the 7-hour journey again. Whether or not you return to Mayo, I wish you well. No, this should not be a part of aging.

Fri, Sep 11 12:28pm · Ulcerative colitis: What helps with constipation? in Autoimmune Diseases

Can you take a clear, dissolving fiber powder with a glass of water in the morning? That has worked for me. Also, you can get suppositories that act fairly quickly. I used a long time ago. You can purchase protective fingers that make the second option less distasteful. Good luck! This can really be a bummer.

Thu, Sep 10 3:56pm · PMR initial diagnosis: Can there be an underlying disease? in Autoimmune Diseases

I was diagnosed with PMR and it was backed up by an elevated sed rate (64) and CPR. I took prednisone for almost 1 1/2 years and I hated it. I had all of the side affects at different stages. My PCP followed with frequent blood draws and slowly, I could take less. In January, I convinced him to let me quit when I was at 1 mg. and blood work was close to perfect. I am not sure I had it and I just thought it was the result of working over a desk for many years. I thought it was just abnormal me. I hope your husband will find an answer and probably should see a rheumatologist even though I did not.

Tue, Aug 11 3:20pm · Treatments for Lichen sclerosis besides steroids in Autoimmune Diseases

I have had lichen sclerosis for over 10 years. My gynecologist advises me to use Halobetasol twice a week and Premarin twice a week; however when flares occur I am advised to use Halobetasol twice a day for two weeks, then once a day for two weeks, and then once every other day. Then it is back to maintenance level. I first used Liidocaine and Prilocaine to numb the area, then she changed it to just Lidocaine. I am now using a compounded mixture to numb. None of it seems to really work. I seem to go from one flare to the next with only a few days in between flares. I am in a great amount of pain. I put ice packs on my vulva for 20 minutes at a time. This disease has ruined my life. I cannot make love to my husband and it breaks my heart. At one point, my gynecologist prescribed Prednisone. I hated the side effects from that. I think she is out of ideas. I need to see her, but I wrecked my car and am not going to ask my husband to drive me to her. I live in the Kansas City area. If anyone wants the name of my gynecologist I would be happy to tell you. Any advice is welcome. I feel so sorry for all of you who have this dreadful disease. Thanks for any help you can suggest.