Alana, however difficult it is to be in the not sure zone, it is better than some awful thing you are sure of. I hope the Remicaide helps.

Thank you everyone. It has been progressing this last year and a half. I think my working honestly made it flare up so badly. It was my first time working in a while. I hope the Remicaide helps as well, Sheila. I will have my third infusion on the 15th. I am feeling some effects, so really hoping it helps :)

Alana, it can't be easy not to have definite answers after these tests. At least they've started treatments that might help. I hope for better things for you in the days ahead. My thoughts and prayers are with you.

Alana I'm so sorry to hear about your health problems, praying that you are able to find solutions.

Me, too Alana. Best wishes.

Yes Kes, not having the answers really is the hardest and most frustrating part. Thank you all for your good thoughts and prayers as I really am trying to stay positive and just live my lude to the fullest, with everything going on. It's the best thing to do. I do get down at times, but it doesn't last. Thank you all again.

Alana, thanks for the update, and I hope all goes well. I greatly admire your attitude and generous determination and hope they continue to carry you through future events. Perhaps this doesn't seem related, but I was always impressed that you had the nerve to grow once-blooming European old roses in South Carolina (as well as being able to see how beautiful these roses are), and I hope that same adventurous spirit will support you in your current health issues.

Thank you so much Melissa:) I have been reading alot, and trying to get my diet back clean, and back to my yoga, asI believed it helped tremendously. Life gets in the way , though we know what we need to do, back to the drawing board, so to speak, got to get myself back together :))

Alana - yoga is probably something that will really help...(not that I do yoga LOL). I walk, and it ALWAYS uplifts my spirits...so yoga would probably do the same thing. We're in your corner, Alana!! <3

Alana, I just caught sight of your update. It seems that so many autoimmune/ nervous system disorders are inconclusive tangles even as all kinds of new info about causes, connections and diagnoses are filling the med journals. I know you’d dearly love some answers and solutions, and I hope you get some solid and helpful ones in the near future. I applaud that you are keeping your focus on resilience, health and joy in the areas of your life where you have a say. I am so relieved your heart results are strong, although I could have told your doctors that if anyone has a strong heart (and beautiful soul), it is you, Alana! I have all fingers crossed for good results from the Remicaide! As you said, take good care of yourself first; then everything else. Stop to smell the roses, and spend some quality time with your beloved Orpheline de Juillet, whatever the season. Sending lots of love! Carol

Alana, Ive just recently rejoined and just came across your post. I am praying that you have some positive results and questions answered by now I used to be Ozmelodye

Alana,

I do have sarcoidosis. When it was first diagnosed my doctor who was a researcher in the field gave me some information that helped me cope with it. He said that depression comes with it. This does not sound like good news but it is. It gives you a tool to discount the negativity you feel as real is not in fact accurate and that things will actually turn out better than you think. This applies to other areas of your life as well. I wish you prayers and a good outcome and hope this helps.

Cath

I am not a medical doctor, but if yoga seems to help; I suggest massage also. Massage should build up your oxytocin.

https://www.google.com/search?q=%22massage%22+%22oxytocin%22&newwindow=1&sxsrf=AOaemvLToFxBAFA0SF9JDNyWf6ACLSH4yA%3A1632408434660&source=hp&ei=cpNMYYnvI7PT9APlvZmIBw&iflsig=ALs-wAMAAAAAYUyhggcxud9olh7ykeQLzu-BaBMKbeEc&oq=%22massage%22+%22oxytocin%22&gs_lcp=Cgdnd3Mtd2l6EAMyBQgAEIAEMgYIABAWEB4yBggAEBYQHjIGCAAQFhAeMgYIABAWEB4yBggAEBYQHjIGCAAQFhAeMgYIABAWEB4yBggAEBYQHjIGCAAQFhAeOgQIIxAnOgQIABBDOg4ILhCABBCxAxDHARCjAjoICAAQgAQQsQM6CwgAEIAEELEDEIMBOgsILhCABBDHARCjAjoHCAAQsQMQQzoOCC4QgAQQsQMQxwEQ0QM6BQgAEJECOgsILhCABBCxAxCDAToICAAQsQMQgwE6CwguEIAEEMcBEK8BOgUILhCABDoICAAQgAQQyQM6BQgAEJIDOgsIABCABBCxAxDJAzoICAAQFhAKEB5KBQg8EgExUM8TWM19YPyNAWgBcAB4AIABrwKIAccVkgEINi4xMy4xLjGYAQCgAQE&sclient=gws-wiz&ved=0ahUKEwiJ8Pymq5XzAhWzKX0KHeVeBnEQ4dUDCAk&uact=5

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https://www.healthline.com/health/ms-massage#takeaway

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https://pubmed.ncbi.nlm.nih.gov/34338108/

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https://pubmed.ncbi.nlm.nih.gov/34559691/

Massage does help, although I don't get it nearly enough. My husband has carpul tunnel in his hands badly and is the king of putting off surgery. Thank you all who have replied with thoughts and prayers. Carol if you hadn't said that you had said something on this thread , in the other thread I wouldn't have saw everyone's thoughtful replies. I don't know , either houzz didn't notify me, or I missed the email. Cath, I am sorry you have this as well. Mine started in my lymph nodes and lungs, and has spread from there. Pretty sure it's in my muscles as well, I have knots along the back of both thighs and have started having pain in the front of my legs. Pretty sure neural and spine. Where has yours been? I was lucky the first 10( or so, could have been 8, just don't recall exact year diagnosed) years, and it didn't do much beyond my lungs. I do have scarring on both my lungs. I honestly think it started spreading more aggressively when I tried to work. So gardening and yoga are what I'm staying with. Wish I could work, but health is more important.

Alana,

Mine is in my lungs. I have some scarring of the upper parts but function at average for my age when last checked in 1994 at the same time it was diagnosed, six years after onset. I also have polyneuralgia, that is, I had constant pain and aching in joints and bones especially in my limbs, tremendous fatigue, sleeping 12-14 hours a day. I did a lot of research on Pubmed and elsewhere. I got lucky and found an herbal medicine that helped in 1997. Later in 2011 the doctor found that I was deficient in Vitamin D and later still found that I was hypothryoid. At each step I improved. The scarring is here to stay but the pain and fatigue area gone except for an occasional day. As far as the herbal medicine goes, I know it sounds like Voodoo but it is not. The active enzyme in the herbal medicine has had a great deal of scientific research since my research which is great! However, I think that the medicines that our bodies respond to depends a lot on our genetic make up and can be very different for different people. Hope this helps.

Cath

I believe that as well cath. What herbal medicine helped you?

Wow :( what a lot of suffering. Good job on doing research and making things as good as you can.

Alana,

You're going through a lot. I will be praying for you. Prayer changes things, and we have a prayer answering God. He even heals without being asked! (Luke 13:10-12.)

Please, Mr. Alana, respectfully, get your Carpal Tunnel treated! There are cures for it! Why live in pain when help is available?

I have Tarsal Tunnel in both feet due to CMT Disease (Charcot Marie Tooth Disease), plus severe neuropathy in my 'dogs,' as well, also due to CMT. When I touch my right foot to my left foot I cannot tell that I am touching myself. I find that amusing! It feels like my feet are touching a big rock between them! 😄

The pain is extreme, the CMT Disease is progressive, and there is no cure, just pain management. My doctor said that if I end up in a wheel chair it won't be because I can't walk. It will be because it is too painful to walk. If there was a cure, I would jump at the opportunity to get the curative process going. Yet, I am really fortunate in that CMT is rarely fatal, and it first manifest itself in my life in my mid-fifties. So, I had many years before that of a relatively healthy life, now pushing 70 yrs.

Mr. Alana, please take my advice to heart. Your wife needs you as well as you can be, and you need to be as pain free as you can be for your own good, too.

Moses

ted

Alana this is the 4th try. Houzz is not allowing me to answer your question. I will try again in a few days.

Cath

Alana, this is the 5th try. Houzz is not allowing me to answer. I will try again in a few days. Cath

Moses - I love your faith. :) :) I'll be praying for you too. :) :)

Moses thank you so much for your prayers! So very true. They say he doesn't give us more than we can handle. Much love and prayers for you as well. I can't imagine what you must go through! I hope the pain medication keeps working, or at least lessen the pain you are in. I will let the hubby know what you said, thank you.

Cath, I am sorry houzz is being so aggravating, and I will look forward to your reply when you are able to get it through.

Alana,

( 2nd try)

Taking herbal medicine has its difficulties. The first medicine I took was discontinued.It took me almost a year to find another that worked. Recently it has happened again and I am evaluating two different types. Another factor is the formulation. A significant percentage do not contain the ingredients and amounts stated on the label. My husband subscribes to Consumer Labs which has scientifically evaluated and compared different over-the-counter medicines. If you are considering herbal medicines, this may help you to avoid some of the pitfalls.

The herbal medicine that helps me is called Milk Thistle (Silybum marianum). The active ingredient is silymarin (and others). The active enzyme is glutathione. I had been on and off prednisone (a steroid) for three years. Without it my lungs clouded up, which was a prelude to scarring. The milk thistle reduced pain and allowed me to get off of prednisone without the lungs clouding up.

Your safest and quickest course is to wait for the results of your lab tests and work with your doctor.

I will not post more on this thread as it is OT and probably TMI for antique rose buffs. However please update us on your condition. We care.

Cath

Cath, I think it's perfectly OK to post an "OT" like this one! Best wishes to you, Alana, and all who struggle with difficult health issues!

Thanks Cath , I will look into it. Prednisone does help, but my doctor doesn't like to prescribe it alot because it helps, but harms. But honestly, I think all the medicine does that. Thank you Bart for the prayers they are much appreciated.

Update. Saw rheumatologist, he is increasing Remicaide, and may later switch my leflunimide to methotrexate.

That sounds really helpful, Alana.

Let us know how it goes! ❤️ Carol

I will. They were supposed to call me in a prescription of prednisone, because my inflammation was high and I missed my infusion. But idk what happened , they may have forgot or got busy. Woke up this morning in so much pain in hands. Elbows, shoulders, , hips , knees and feet from inflammation. Could hardly walk. First time that happened. I went to the hospital, couldn't keep waiting on doctor. Didn't want to call and aggravate them. Plus takes time for prednisone to work and didn't know when they were calling it in, I couldn't wait. I went to the hospital. They gave me some kind of steroid shot in the muscle. Stung like the devil, never had one before. And got a taper prednisone. First time I ever had to go to the hospital.

Oh, gads, Alana! That is awful. I am SO sorry! This pandemic has made everything so crazy for healthcare and anyone who daily manages (or can’t manage) ongoing conditions. Just getting slammed by the additional pressures and challenges. Have you contacted your doctor‘s office to let it know the consequences of the dropped ball? Everyone in medicine is working way beyond capacity, but your doctor needs to know that you have very real and ugly consequences when things fall through the cracks. I hope your inflammation is significantly easing up after your trip to ER and the steroid treatment, I hope you are much more comfortable and settled in again at home and I hope your family can relax a bit now that mom’s red alert has been downgraded to yellow. Sending you lots and lots of love and care! Carol

Yes, they know I saw them Monday. As I said I think it just got forgotten, it was alot of stuff I gave to them, so hopefully they get everything done. I am feeling somewhat better. The shot Kicks it in to absorb sooner, I think. By morning, I should feel a great difference. Lots and love and thanks!

🤞🤞🤞🤞🤞❤️❤️❤️❤️❤️

Alana, I have been traveling and for that reason not on the forum much recently, so I'm just seeing this now. What a shock! I am so sorry you are going through this. Wishing you good care and good healing.

Hugs to you.

RF/Paula

Thanks so much Rosefolly/Paula. I feel certain we will get this back under control ❤

Alana: I'm following this thread and I have been praying for you. I feel bad for what you are going through: "Woke up this morning in so much pain in hands. Elbows, shoulders, , hips , knees and feet from inflammation. Could hardly walk ... I went to the hospital. They gave me some kind of steroid shot in the muscle. Stung like the devil, never had one before. And got a taper prednisone." Alana.

There were few times in my life that I was in horrible pain (I'm 60):

1) Flu-shot reaction back in 2015 .. extreme vertigo & vomiting & pneumonia. Wish I could die back then, the pain & dizziness lasted for 2 months. Antibiotics took care for pneumonia, and ear-wax removal by a specialist took care for vertigo.

2) Injured my finger with garden work, and the crushing pain was unbearable. This was just as bad as the 2 staph infections from poison oak which I dripped in pus (Bactrim DS plus Keflex took care of the 2 staph infections).

My finger was throbbing in pain for weeks, so I prayed to God, and out of the blue, Karen (Bluegirl here) sent me RAW pecans from Texas for no reason !! Ate lots and my finger healed immediately, then it dawned on me that all the nuts I ate before were ROASTED which zapped out vitamin E for healing. Vitamin E is destroyed by heat and is essential for skin-healing. From that time on, I'm convinced that a RAW fruits & veggies & nuts help the body to heal. There are many testimonies whose MS got better via a RAW diet (more fruits & veggies).

https://www.pcrm.org/news/blog/tackling-ms-plant-based-diet-saray-stancic-md

https://www.furtherfood.com/multiple-sclerosis-treatment/

https://nakedfoodmagazine.com/plant-based-diet-healed-body-multiple-sclerosis/

3) Ragweed allergy back in 2013, I ate lots of cantaloupe back then, which cross-reacted with ragweed. Cantaloupe is in the ragweed family. I was bed-ridden & could not breathe, even Benadry-D didn't help. So I made a drink of brewer's yeast powder & honey & soy milk, and the inflammation went away.

Brewer's yeast is a by-product of the beer-industry & known to be anti-inflammatory & shorten the duration of cold & flu. Brewer's Yeast is sold as expensive Epicor pills on Amazon. But the powder itself is cheap. From the web: "Brewer’s yeast reduces colds and flu. German researchers confirmed that a beta-glucan supplement derived from Brewer’s yeast can reduce a cold’s duration by more than 25%, confirming other studies on yeast with similar findings."

The last time I had a cold was when my daughter was 4, if I don't count flu-shot reaction back in 2015. My daughter is 19 now, and we both take brewer's yeast tablets daily.

Flu shot DOES NOT prevent cold nor pneumonia, it simply prevents a few flu-strains that international scientists think you "might catch it." My sister, a doc, informed me that the flu shot suppresses the immune system temporarily, and husband did catch a cold right after his flu-shot back in 2017.

Karen (the one who gifted me the RAW pecans) ... told me how the flu-shot killed her Mom after her Mom got better & released from the nursing home. Karen's dad is a doc. Karen's Mom died in her 60's. Karen posted in rose forum as Bluegirl, and gave many rootings to people.

Ahem...I won't be reading your posts anymore, Straw. This one was just downright self-serving. I am EXTREMELY grateful to all of those that, like myself, get vaccinated.

What's more, this thread is about Alana-a brave and mighty lady.

Bart that's pretty rude. If someone has information that could help overcome a major health issue it is a kindness to share it. Reading through Straw's post, she does want to help by making information available. Also, I am glad you don't suffer from negative side effects from your health choices but that doesn't mean that no one else will. You are responsible for you.

Alana, I pray for easing of your pain and that you are able to use all the research available to find an option that helps you.

My DH and I just got our third vaccination, and this year's flu shot, at the same time. I had a 3 hour long reaction the next day (just very tired -- had to take a nap), and my DH said he did not have any (which is what he always says - never complains about health issues). Very grateful to have these vaccines, and indeed all of the other many vaccines which most of us have had during our lifetimes. I am old enough to remember getting my THREE polio vaccine shots - a child next door had polio, and I have felt thankful for that vaccine ever since. Definitely keeping away from rabbit holes.

Jackie

Let me first point out by saying I love you all. I think Straw really didn't mean not to get the shot, for getting vaccinated. I Feel, She was just offering offering some alternatives to help. My house, has choosen to get vaccinated, the doctors reccomend it. I am nervous though. My eighteen year old second cousin, who is healthy, has gotten heart problems from the vaccine. In his booster, I believe it was. My oldest daughter has decided against it, and that's her choice. I believe everyone should make their own decisions. I can say, that I did catch sars 2. My husband caught the original covid, along with my oldest daughter, and I caught sars 2, which he and my middle daughter caught from me. It was much worse, and gave my husband and I chest pressure, pain. And hard of breathing after the 5th day, I believe. It also spread much faster, imo.

I actually do believe healthy eating is however very essential to the body. It is true, and honestly, it has always helped me, along with excersise. It really is essential. I know I wish I could juggle everything perfectly, but alas, I cannot. Prednisone is known as the devil's tictat. It helps just as much as it harms. That's why my doctor and I only use it when neccessary. I actually try my best to eat clean, though I am not always successful, I do my best. And That is all I can do. I fall down sometimes, but you have to pick yourself back up again. If you don't, that's when you are done living. I am not done living, that's for sure. I do get tired, but I don't give up the fight. I am actually ordering me a sarcoidosis warrior shirt off Amazon soon. Maybe when I get my next check.

Thanks everyone for there kind thoughts and prayers!

Edited to add I reccomend the covid infusion, if you do get sick and are immune compromised. I believe it helped me to not be hospitalized, along with the antibiotics and steroids they gave for when I had it. I felt bad, when I was done with the steroids on the following day. It's when my symptoms got worse. I wholeheartedly believe that the infusion helped me tremendously as well.

Check Houzz forum and you'll see others testify on the side effects of flu-shot years ago, including Jim in PA, and Ken who posted a fabulous pic. of The Prince rose.

Why bash the the small % of people who have side-effect from the flu-shot of 2015? That's TOTALLY DIFFERENT from the Covid shot. There are several different companies across USA who made different flu-shots back in 2015 (I got the Fluvirin).

I post for honesty, and not for popularity nor to impress or get sympathy form anyone. I knew it advance that I would be bashed for telling the truth, and I frankly don't care if people don't read my posts, but the truth need to be told.

The truth is there's always a small percentage of people who suffer from flu-shot, and it's not known. How it is down-serving to report my horrible side-effects from the flu-shot and how RAW produce can heal the body fast? But it is down-serving to be self-righteous and to condemn the minority who suffer from the side-effects of flu-shot reaction back in 2015. If you don't suffer from side-effects of flu-shot, then that's great, but please don't condemn and harass those who suffered from it.

Wow....Bart...I'm offended on Straw's behalf. She was empathizing with Alana....showing her connection with her...like we all experience in the human condition. And Straw's information is based on real experiences. I, for one, will get my shots...but it's always good to be well informed.

Thank you Straw for sharing your knowledge with us and for being caring and compassionate.

Of course, we all wish Alana well. :) :)

Sorry to have been offensive; I guess to me Straw's post sounded like a "no-vax" publicity and a changing of the subject. I don't understand your remark, joeywyoming: "Also, I am glad you don't suffer from negative side effects from your health choices but that doesn't mean that no one else will. You are responsible for you." Getting oneself vaccinated is being socially responsible. "no man is an island", as John Donne put it.

Bart - no worries. I'm just protective over Straw...she's been so good to me. :) :)

Thank you so much, rosecanadian.

I will try to ease the tension.

As reported here before, I once played a doctor in a 15 second segment of a TV commercial. It was a non-speaking part.

I got my flu shot in January. I am not going to get another one. Until the CDC weekly flu map tells me it’s time.

I am always happy to hear when non-standard treatments produce good results. The more I know, the more I know I don’t really know.

I can remember saying this many times thru the years:

‘The likelihood of this happening is very, very small. But if it happens to you, it doesn’t matter that it‘s very rare.’

Having said that, I came very close to opting for Janssen

for my third ”shot”.

Yes, let's get rid of the tension. :) :)

Amen to that!!!

Here in Tuscany the flu shots are not available yet; I have to call this coming week to get an up-date. With all my health issues, I need the super-strong one. I do take brewer's Yeast for the vitamin B it provides, but, sad to say, it doesn't prevent me from getting sick.