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Posts (4966)

11 hours ago · PMR coming back? in Polymyalgia Rheumatica (PMR)

@valb68 I have not taken a biologic, probably because it hasn't been needed for me. Shortly after my second round with PMR I started looking into lifestyle changes. I read a book by Dr. Terry Wahls – The Wahls Protocol. She has an amazing story about how diet helped her MS symptoms – https://terrywahls.com/about/about-terry-wahls/. So I have tried to focus on reducing or eliminating processed meats, sugar, fast food, and fried foods which I think helps with any autoimmune disease. Here's a link you might find helpful – What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

Have you tried making any lifestyle changes to see if it helps with the PMR?

13 hours ago · Anyone had the 5 treatment proton therapy for prostate cancer? in Prostate Cancer

Hello @daveywavey, I would like to add my welcome to Mayo Clinic Connect along with @dandl48 and other members. I have BPH but am lucky enough to have it controlled by medications so far but understand the decision to have the treatment can be stressful. There is another discussion you might find helpful — Follow up after proton beam treatment: GREAT PSA NUMBER: https://connect.mayoclinic.org/discussion/great-psa-number/

You also might be interested in the following Mayo Clinic – Proton Beam Therapy Program – FAQs: https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/frequently-asked-questions/gnc-20187695

Are you able to discuss your concerns – pros and cons with your doctor?

13 hours ago · PMR coming back? in Polymyalgia Rheumatica (PMR)

@valb68, Don't be discouraged and keep taking it one day at a time. My first time with PMR it took me 3-1/2 years to taper off of prednisone and be relatively pain free. Have you tried tapering down 1/2 mg at a time and go for a week at that dose and if you can tolerate the pain try another 1/2 mg reduction. If you have the 1 mg tablets, they are easy to split.

17 hours ago · Rheumatoid Arthritis (RA) - Introduce yourself and meet others in Autoimmune Diseases

Hello William @masteratt, Welcome to Mayo Clinic Connect, an online community that connects people. I think a lot of us probably would rather use a phone to talk with someone. If you find another member who shares your common health concerns and they also want to talk to you on the phone, you can share your personal contact information using Connect's Private Message function – How to Send a Private Message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message.

You mentioned that you came to Connect to learn more about TEC. I'm assuming you are referring to Transient erythroblastopenia of childhood (TEC). The Genetic and Rare Diseases Information Center has some information on the topic which also has and audio feature — you just click the Listen button at the start of each topic and it will read the information to you.

Transient erythroblastopenia of childhood: https://rarediseases.info.nih.gov/diseases/7793/transient-erythroblastopenia-of-childhood

Are you able to share a little more about your diagnosis?

20 hours ago · Cataract Surgery: What to expect after surgery in Eye Conditions

Hello @dablues, You will notice that I changed the title of your discussion a little to help members find the discussion and your questions. I just had cataract surgery on my right eye on July 31st. I had my followup appointment in the afternoon of the same day. I think it was because I had the surgery on a Friday and they don't have appointments on the weekend. My surgeon told me that some people will experience blurry vision for a few days but it will clear up. I was told no driving the following day but after that it would be OK as long as my eye was doing OK. I also was told to keep my head above my shoulders when bending over, not to lift more than 20 pounds for one week, not to play golf for 2 weeks, play tennis for 3 weeks or swim for 4 weeks. I have an exercise elliptical cardio bike that I use several times a day and was told I shouldn't do high cardio that causes the heart rate to be high. I think the reason is to keep the blood pressure in the eye as low as possible to prevent problems with the surgery. I have been using the bike for several 30 minute sessions a day but on low resistance and I don't really stress myself but primarily just use for light exercise which my surgeon said would be OK.

My vision was actually pretty clear after the surgery but I had to wear and eye patch the first day and while sleeping for a week. That was a pain due to having to tape it on the eye with the easy tear surgical tape. After the second night of struggling to tape the clear plastic eye shield over the eye, I found that I could make an elastic band and attach it to the eye shield and that would mostly hold the eye shield in place. Then I used 2 small pieces of the surgical tape to hold it in place. I made the elastic band by tying ear loops from disposable face masks to form a long piece and then tying the ends to both sides of the eye shield. I did have one episode two days ago where I had a floater in the eye which I think may have been an eyelash or some matter floating around on the outside. The hardest thing for me is to not rub the eye.

I would write down your questions so that you don't forget to ask when you see the surgeon or care team. Can you let us know how your follow up appointment goes?

1 day ago · Electric shock type pain in ankle in Neuropathy

@marshabel, You may want to check out this discussion in the Cancer group where members have shared their experiences with chemo induced neuropathy and what helps them.

Does anyone have a treatment for Neuropathy due to chemo: https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/

Have you tried any lifestyle changes or supplements to help with the neuropathy?

1 day ago · Carpal tunnel symptoms and PMR: What choices do I have? in Polymyalgia Rheumatica (PMR)

Hello @pfafpa, You will notice I changed the title of your discussion to hopefully help members find the discussion a little easier. I also have carpal tunnel syndrome and PMR but my PMR is in remission. I have episodes with my hands probably due to keyboarding for many years in a computer related job and hobby. I used to play golf a lot when I was younger but haven't played for years. Your question peaked my interest so I was able to find a reference supporting golf as a cause of carpal tunnel syndrome — Carpal Tunnel Syndrome and Golf: https://golfoperatormagazine.com/carpal-tunnel-syndrome-and-golf/. For me the CTS symptoms seemed distinctly different than my PMR symptoms. The CTS was more numbness in the hands and wrist and the PMR was pain in all of my joints but mostly in the shoulders, arms and legs. Because I still have the CTS and have never had the surgery I still have numbness in my hands and wrists but it is something I've learned to live with as it's worse some days but not all of the time. It's especially bad if I've slept on my arm/hand on my left side.

You may find the follow CTS related discussion helpful.
— Carpal tunnel release: https://connect.mayoclinic.org/discussion/carpal-tunnel-release/
— carpal tunnel surgery side effects: https://connect.mayoclinic.org/discussion/carpal-tunnel-surgery-side-effects/

@dawn_giacabazi, @IndianaScott, and @bernese53 may be able to share their experience with Carpal Tunnel Syndrome and prednisone also.

It sounds like you are debating whether to have the CTS surgery or continue to take prednisone to treat the pain. Are you worried about the long term side effects of prednisone?

1 day ago · How to relieve cold water lasting headache? in Brain & Nervous System

@aliali, I would have a concern that it has lasted 7 days. From what I have read, the type of headache you describe should only last a very short time.

"Ice cream headaches are brief, stabbing headaches that can happen when you eat, drink or inhale something cold. Biting into an ice cream cone is a common trigger, but eating or drinking other frosty items, such as ice pops and slushy frozen drinks, can have the same "brain-freeze" effect. Officially known as cold stimulus headaches, they can also occur when you suddenly expose your unprotected head to cold temperatures, such as by diving into cold water.
The good news: Most ice cream headaches are gone as quickly as they develop…"
Mayo Clinic – Ice cream headaches – Symptoms & causes: https://www.mayoclinic.org/diseases-conditions/ice-cream-headaches/symptoms-causes/syc-20373733

Have you discussed the cold water headache symptoms with your doctor?