u/Lanky-Rough2688

here for my hubby. I was thinking that he had had some success reducing the inflammation that could result in granular formation using my handheld infrared device that I got over eight years ago from a slightly different Amazon for my chronic illness issues. As he lay there and of course face plant fatigue that you all get, I decided to give him an infrared treatment. I did his knee areas. I did his ankles. I went up and down his legs now are so wasted away yes so far we’re in the third month of diagnosis so we’re just getting the tests. So far non-functional problem in his lungs and his eyes have responded to injected biological. He’s laying on his back which isn’t the best and I’ve been working on him to lay on his left side again that reduces the amount of Gerd that you get and it’s OK for the heart too. I also did the top of his head where he’s losing his hair and then I took it, and I shined it down from his eyes, not directly as I put down from his eyes so I could get his nose and then cheek areas where he is having some issues. This time I spent about 15 of the 30 minute cycle. He said when he woke up about another half an hour later gosh I feel so good. That was a good nap and I told him what I did. So I think that I’m gonna continue doing that. He does it himself, but in those times that he is awake I would rather that he’s doing something fun and not just treatment. I felt very good that I was giving him that time; I had had car accidents that’s where I get my chronic illnesses from and and I really enjoyed going to a PT and getting the infrared treatment. Well, you know we could do that too, but you know how precious time is when you got SARC and driving to and from in the whole thing, so some of you out there think about doing this for people in your life that have SARC. Best to everybody out there.

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camera worked fine 12 hours ago. It’s not doing any playback. I only see live feed. And I can also see the events, but it’s not letting me play back and it’s only allowing live and then it just spins and then says video not available when going to an event. See photo below. We already unplugged and plugged this one. All the rest of the cameras, indoors and outdoors Are okay. Subscription thus working. So it’s not a Wi-Fi issue since I checked and Wi-Fi is at 270/27. Do have it on Gemini. Reset iPhone many times. Have it on continuous 24/7 recording. See photo above. Also unplugged and plugged back in the router.

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UPDATE

we reached out to his group that handled his prostate cancer

We sent a note about the symptoms and even with proton therapy for 23 weeks there wasn’t the severe fatigue. There were no memory issues and there were no changes in this personality. The cancer group sent a note and I don’t know what was in it, but it looks like we are scheduled for an MRI of the brain and spinal column now by yhe pulmonologist. Yes our PCP was not there for us see notes down below so we went back. he was through with the cancer people five years ago, but med people who know you dramatically such as with cancer and know your situation you can reach out to them. I don’t know what’s happening with our PCP because he abandoned me on a B12 deficiency problem parentheses I had to go to a clinic by Zoom in Florida for my weight loss journey to get the shots and people be careful out there. SARC is associated with B12 deficiency). and he just is not checking in or answering any of our questions about what’s going on. he obviously doesn’t want to be part of the team SARC AGAIN THANK YOU TO EVERYBODY THAT REASSURED ME AND ON THIS!!!

here for my hubby. He was a healthy 770 year old. But drastic change in last two weeks. not seeing new rheumatologist till August. so sent note to pulmonologist that there is severe fatigue. personality changes. memory loss. doing cardiac monitoring now. mRI of heart in August too. no heart issues. I get that they out stuff but? and biopsy after PET diagnosed sarc in lung lymph node. no signs of breathing difficulties. nervous about it. wanted to start neuro check. but only got a home sleep test From pulm. And he sleeps like a baby. He takes harder face plant naps than me. he is doing more healthier diet since I have MCAS. CFS. POTS. and got him on men’s gen vitamin with pure encapsulation with their AI anti inflammatory and GI tract pills too. more rest. more water. has skin signs on nose and cheeks. using Manuka honey on it with success. Want to go to rheum seem clinic soon. But need referral. We scared that we are not on any meds for this huge change and being put off on possible neuro damage. we thought there could be mris of brain spinal plus tap maybe and possibly brain biopsy. Sooner in works. had in eye for year in retinal bed. two injections after two steroid runs did not work so biologic in the needle finally got that down. waiting and wondering. pure hell. Why??? waiting while you’re wondering even a month two months three months or more because you have to get an OK from the insurance company for anything like a biologic. Systemic one. Crazy knowing that there could be damage right now.

here fot hubby. the sarc foundation does not believe that is an autoimmunity off their page. odd. they seems to be alone. heads up. no disagreeing. just seeing it now. page on it sent to me by relative. we told family it was via docs and research read so far. Sorry for all lower case. Trying out daughter‘s way.

when I first started chat, I got some wake up. I’ve even gotten wake up sensations with sublingual for a whole year. I’m only on my fourth week of shots. But you had exercise cause I’m able to do some exercise now because my sciatica is gone my dragging my right foot is gone. And I’m feeling much much better now I have to work on strength exercises in the pool and you say how is that? Well I’ll have to use my own body. I am with comorbidity of MCAS and CFS and fibromyalgia and POTS. So my body is pretty good for that and I am 71. I just want everybody to know that when you start again doing the shots and you had exercise a lot is going to be happening. Some is a little uncomfortable.

my PCP is not willing to give me shots after three weeks of messages back-and-forth; I would’ve done it by Zoom or in person, but I was too afraid about being upset. I have the comorbidity of MCAS and CFS. Thing is he still believes after so much discussion and he is a DO doctor of osteopathic medicine so does that matter because he believes that a blood test for B12 while I’m still supplementing by sublingual is going to show something and he knows I have something. I have posted before in some of you have seen it. I was sent to rule out MS so it’s not like he’s saying I don’t have it. I think he doesn’t want to do an open ended prescription through united healthcare supplemental. I was recommended Olympic pharmaceuticals, but they’re in Florida and everybody here knows B12 is heat sensitive. I am in the Pacific Northwest by the time it gets to me. It’s gone through a lot of hot states. Is there any Pharmacy in the Pacific Northwest that I can deal with online and pay for it? PS I’m also willing to go to a physician by me also. At this point, I’m just willing to do anything.

Well, I had thought at first that it could be SLE systemic lupus erythematosus, but now they say the autoimmunity is sarcoidosis. It can be pretty benign at his age at 70 but also he he’s probably had it since his 50s because he’s had the memory loss and the fatigue growing by each decade. I just wanna put this out there for those of you that have to face this. On a personal level that the one you depended on that’s help you through 10 years now of MCAS and before that for me CFS for 10 years. Now he will need my help. Things that we have done for me will help him. The diet, the low level exercise, even the naps etc., as well the coping mechanisms with the advent of new comorbidities and successes with some other ones. No one has to read this and no one has to make a comment; I just want you to know you’re not alone out there because now I’m determined even more to get better. How can I do this? Well by being here at Reddit and looking at research papers cause I have a scientific background and putting my all into it. Sadly it’s already in his eyes so blindness is a possibility within the next 5 to 7 years so we live in a 55+ that was for me now it’s gonna be for him also because it can affect every organ system and I will have to learn how to drive the little local area. So lots of work on my sympathetic system cause you know how that is for some of you and it sure is for me. I’m gonna have to make myself physically stronger, cause I’ve had B12 deficiency for one year without any exercise, but I’ve been coping with it. Make sure to check out the Reddit on B12 deficiency for those of you that are involved or suspected because it’s really common comorbidity. Best to all out are changing.

my hubby might have lupus. He goes in today to get the test ANA probably to begin with. At the rheumatologist. He is my full-time caregiver. I have MCAS. I have pots and I have CFS. CFS for 20 years with management MCAS 10. I also been fighting for almost a year B12 deficiency. They think he has it because he has an unusual happening that’s rare in his eyes in the retinal . And he also when getting the injection in his eye for that, Had the red butterfly flare which he had a few days earlier in front of me

I’ll put it in later if it comes back positive the ANA test, But we’re in our 70s in the loop is so probably benign They say On the Internet. I guess I’m just posting to let people know that your life can change quickly. He’s also having memory issues and what they thought was possibly arthritis, but who knows now. He’s already gotten through cancer, squamous and badal on his nose with a forehead flip over it after surgery Stage two prostate cancer with proton therapy. I had him as my caregiver during that time, but that was before the B12 deficiency which has taken me down so much people make sure you look into that! So nervous and just sharing. I am both scared and hopeful but I know he’ll be in the same neighborhood with me now and I’ll be able to be a bridge.

now after 10 years with mcas and b 12 def my hubby is going to be sicker than me. our diet he shares with me will help as it prob already does. Low histamine but not zero. GF. High fiber. Green!!! Low sugar. B 12 foods like eggs and frozen bison and salmon. . how did I know? we have it hard and become polarized so don’t forget to look at your partner too. he was taking naps along with me. An he has the butterfly lesion. He had vision probs. Really dry skin. Our full time caregivers need to take CARE of themselves too. best to all. Thought I would share. Life is what happens between the ruts on the road!!!