I'm SK and have been been a member and volunteer of Ben's Friends for years on various sites.
Though I don't have Chiari, I worked with a gal who was finally diagnosed with it. She is a lovely lady, who had a horrible time with her balance. We were always grabbing her to support her or picking her up after she had lost her balance. John's Hopkins finally diagnosed her. She remarried and moved away and I lost track of her, but hope that she is better, if that is possible. We always hope that about people we care about, even if that seems naive. I surely don't claim to be an expert. I have a lot to learn and the best way to do that is through you.
My genetic inheritance is autoimmune, when the immune system goes into overdrive and attacks healthy tissue, and believe me, it's not fun either. Seems you can never just have one of them!
I have been told that you all were the nicest folks, so of course I am glad to help in any way, and anxious to meet you.
I have chiari pressure in head, obviously inflammation, tingling arms and have been taking Advil for over a year. I am currently looking into holistic for the inflammation. I take my vitamins in liquid form, I take magnesium and omega-3’s daily to help. Any suggestions?
I'm certainly not a Doctor, just a patient, and though I don't really prescribe, I can surely relate. I can tell you what has worked for me, what hasn't. Come to find out, my cousin has the same autoimmune disorders, and goes to the same Rheumatologist! He is also a professor and is interested in comparing if what works for her will work for me. There are other considerations, of course, but it's that genetic link he is interested in as a scientist.
Psoriatic Arthritis is my primary disease, and my Rheum tells me that it is the most dominant autoimmune disorder in this area, he has also told me that 'the golfer' (Phil MIchelson) who does the Enbrel commercials has done a lot for helping us, that up until a few years ago it too an average of 35 years for a diagnosis, and the treatments were almost nonexistant, the average time is 7, and that may have improved since then.
It took 7 years to get a diagnosis, so I have been on quite a journey. This was all 'kicked up' with the third car accident where I was rear ended, so it took a long time to get anyone to look past that, and to start asking questions about illness in my family. I kept insisting I had broken bones.
I'm just a temporary helping hand here, to approve new members, feature your discussions, and help out in any way I can.
Jozy, I understand pressure pain, but mine is in my lower back. The PsA has cause considerable joint damage, I have the Spondylitis type, meaning it targets the spinal cord, and it has cause degenerative disc disease, spinal stenosis, scoliosis.
There are times, especially when the barometric pressure is LOW, like now with this snow storm, when it feels like I have a house sitting on my lower back. Honestly it feels like that area is going to explode! I have been to the asst professors of Hopkins and Univ of MD, hoping surgery would fix me, and they told me than that surgery would only ever make me worse, however that could change. I have learned that EVERYTHING can change, but not always the way you would like.
My neck is not great either, I have collapsed discs everywhere, so that can cause some skull cracking headaches, but I'm sure they are probably nothing in comparrison of what you all go through.
My NSAID of choice for the past few years is Daypro, it helps me more than anything, and according to my Internist and Rheumatologist, it's the most dangerous drug I take. My liver and kidneys are constantly monitored with blood work, and NOT for the biologic, but for the Daypro, which is just like Advil.
I did years of acupuncture, and it helped IF you go three or four times a week. It is very difficult for me to ride in the car, it jars that lower back terribly! So by the time I got home, it started to feel like I never went!
I also have the tingling arms, numb fingers, Rheum said that's from the collapsed discs in the neck, he points to the actual area for me. I have collapsed discs in the skull at the top of the spinal cord. I understand those pressure headaches, and am so sorry to hear that you get them too.
Mine usually ease after the barometric pressure returns to normal. I have an Accu weather app on my iphone, it give you barometric pressure readings, but I think I could actually tell them! ha!
My Chiropractor explained the low barometric pressure as causing the body to swell and thump, and it surely does thump! There are days I lose my personality over it. I just hide out in those times! ha!
My new med is Humira, it's a shot I take every two weeks, it lowers the immune system and helps slow down the progression of the joint damage. I feel very fortunate to have these available to me. I took Enbrel for 2 years, it REALLY helped, but I kept getting UTIs. However because of my allergy to Penicillin, it was difficult to give me a med to actually get totally rid of the UTI, finally my Internist tried some kind of Penicillin derivitive, and it worked, and I had no reactions, I was hoping that I could restart the Enbrel shots, but the Rheum wanted to move on to Humira. I've taken 3 shots, and am hopeful!
Though I don't have Psoriasis, all of my grandkids do, they were born with it, so that goes to show just how strong that genetic component is. I was diagnosed by my pitted fingernails! Of all the Doctors I saw, and all of the ideas they had, the answer was on my fingernails! Unbelievable, huh?