Hello everyone, as you may know from my posts, I have APS and have struggled with many challenges such as PE, DVT and other challenges that come with Hughes. I am preparing to go to the Hughes Specialist in Portland Oregon next month and I wonder of a few things if I may find anyone that may have had this common struggle...
Five years ago I was sent into the ER with massive pain in my liver area, turns out I had an unknown mass and lesion in my liver. I have never abused my body in anyway therefore there was no reason for the mass, the five reasons they said would do this, I was tested for and nothing was positive so they sent me home with some of the most intense pain I've had. I had no insurance at that time and the second round of scans a few weeks later showed the mass was gone. I believe God can heal and I pray this happened. The struggle is I wonder is this related to Hughes? Liver mass? I was not diagnosed with Hughes then as I did not have insurance so they did as little as possible to help. In and out!
For the last few months I have had the same beginning pounding in the same area, I will not forget the pain, it is not intense enough yet but it is there for sure and wonder very seriously if this is a common thing with Hughes? Anyone experience this? It is so sensitive and piercing some times, I even put my hand on the area cause it causes me to coddle it. They literally said there was an unknown mass, could this be a blood clot and now maybe re appearing? Has this happened to anyone??
Hope someone has a common thread here?
Blessings to all
Becca
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You do need it checked out as this can happen, not being medically trained we are not suggesting it is that, but wish you to see that other people have had this. uptodate.com/contents/etiol...
I have a mass found in the liver -- and it is been dia. as fatty liver -- my # 's from the metabolic panel are good and LFT'S---I have often wondered if the APS isn;t what is the cause ??? don't know if anyone else has had this also ?????? - Casey and I
I am truly sorry for your pain and the uncertainty. It is easy to be philosophical and hand out platitudes when someone else hurts. But when we hurt it is changes our perspective. I'll be praying for you.
I too live in Portland and have APS. My diagnosis was just this year but I have had the symptoms for much longer. I've been looking for a specialist that understands this disease. I have two very nice docs but am not convinced they really know this malady. Do you trust this doctor you've found? Could you pass his/her name along to me? I have been looking and heard there is one up at Pill Hill. Bless you.
I had a mass on my psoas muscle with extreme pain,unable to move.they told me it was inoperable as it touches all the organs.many tests,and after some 3 MRI many month later it was gone. But since April 2013 taking low dose Naltrexone it lowered my inflammation and some pain. I always wanted to ask MARY, Administrator,what it does for her. But i highly recommend you REALLY research this . There is so much info on it. Also make sure to google :How to make your own LDN.it is on youtube,so easy. It is extremely cheap,even if you have to pay cash. I found out about it on the Sjogrens forum. Just researched it like crazy.there are forums where i learned what others are doing,the one i joined is with LDN & Hashimoto, Also have heart disease,similar to Kirstin,the administrator. Only this year found out i have high anticardiolipin. I only take 1/4 of a aspirin no pain meds, glaucoma drops,and thyroid meds. I got my prescription filled for generic plaquenil, but waiting to see what the aspirin will do. Sorry i do not write, too much pain, but really happy to read all your suggestions. As the administrators say: YOU YOURSELF have to do a lot of the research and figure things out,hopefully with your doctor, but if they can't , you just keep trying,don't give up! I hope i did this alright?
You write that you use only 1/4 af aspirin. No anticoagulation drug?
You also say that you are waiting to try Plaquenil. I am not a doctor but I dare say that 1/4 of an Aspirin will not do any good to your sticky blood and you have got high antibodies also.
You also say you have heartproblems like me. Who is managing these things?
Please let us know and perhaps we can help you to find good doctors where you live.
Best wishes to you from Stockholm where the sun is shining today.
Regarding LDN, yes I do take this with great success but I must stress that I went via trained GP who specialized in prescribing this. I can't recommend anybody going this path alone, as there are contraindications with other drugs such as those used for pain relief. If anybody is treading this path re LDN, it is highly advised that you look at the LDN Research Trust and seek a qualified medical doctor who not only understands LDN but also is fully understanding of all conditions that the patient has. It would not be a good idea to either buy your own medication or make it yourself. I did a lot of research and had very detailed appointments before embarking on this, I also informed all three hospitals I am under of my chosen path and got the doctor to write to them all.
totally agree with Mary, so sorry ,not making things clear, got my prescription from a pain specialist, spent months reading plus watching all LDN Research Trust on youtube, joined hashimoto & LDN forum. I am not one to take meds without all the info possible. I learned my lesson years ago with kidney stones. The side effects were wort than the kidney stones. Since then very careful,get informed. Again ,so sorry, don't want to mislead anyone. Glad you set things straight. All my doctors are aware of this, and pain specialist,agrees with me mixing my own so can adjust as needed, 1.5ml -4.5ml. just as you test daily.
I think I guessed but things have to be clear on here as you can imagine or indeed most forums, glad it is suiting you, as it is me. I am sailing along on 6 mg. Have a good evening. MaryF
Thanks for your reply,I am in nevada, usa. had 3 echo since last october,next one in january,this from a cardio doctor. A lady rheumatologist, did every possible blood test and anticardiolipin is 17 range 0-12 she only said aspirin and gave me a prescription for plaque nil. She never mentioned hughes, never got a second test yet. That was in march. My next appt. is Aug. 20 so i just wanted to see til then what a 1/4 aspirin will do. However i was going to a integrative doctor to get help with my hashimoto ect. They said with me taking LDN my antibodies were probably lower. I feel that way because i was diagnosed with polymyalgia rheumatica in july 2012my ESR [inflammation] was 31 After taking LDN several month it was 0.5. The male Rheumatologist wanted me on steroids for pain. I went to physical therapy instead and bought a small sauna for pain relief. I have osteoporosis , so no steroids. I am in jetted tub every morning on treadmill every day also use a hydromassge bed daily. usually use sauna but temps have been over 100 F daily,keeps my pain manageable. I was born in 1942 germany malnutrition age 5 had the weight of a 2yr old could not walk. Had scarlet & rheumatic fever.Too many diagnoses all autoimmune .Since about 13 yrs i have a computer and try to be informed and "manage"I do go to a internist MD nearby and she is great. I read some take baby aspirin 2x a day i was going to try that next, i also drink it with lots of goat milk if that helps. I am cow dairy free no gluten. I will keep reading and learn from all of you,thank you for your efforts. I also do some volunteer.I write, [not type] letters to widows to be of help, happiness is in giving!
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