If anyone is looking to purchase a 31 Days of Behcet s Booklet I wanted to let... — Behcet s Disease You Are Not Alone

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  • I don't want people to feel bad. I want everyone to get thr benefits of it so please if this was an issue foe you message me and we will work something out

  • Mandi Fessler I have to agree with Lisa .. I also didn't want to say anything but I'm having a very difficult time reading my eyes are terrible and having it bigger font on white paper I think would have solved the problem for me also. THANK YOU for doing it for us it is very much appreciated.

  • I'd love one Mandi

So how many in this new group have what is called REFRACTORY Behcet s Do you... — Behcet s Disease You Are Not Alone

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  • Yep. So far this is me.

  • Thank! Sounds like me.. Will definitely discuss with Specalist

  • This has always been how BD works in my body. Haven't been diagnosed with that term but all of the above applies to my condition.

Hey fellow peeps — Osteoarthritis sufferers and rumatic arthritis suffers

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  • Oh Anji that wouldn't work for me to pierce my tongue. I'm a chicken liver.

  • Lol body modification isn't everyone's cup of tea! The trouble with being a chewer is that you do it absentmindedly, and as such it's one of the harder habits to break because you don't realise you're doing it. I still chew my fingers but nowhere near as badly as I used to, thanks to my tongue bar!

  • Anji, I was doing good today till about 2pm, then I talked to my best friend whose mom passed away yesterday and a family member about a family issue, then I was toast. I decided to journal in my phone what is happening when I start up. Yep it's hard to stop! Grrrrr

I think I m flaring up another uveitis mine usually start few days early with... — Behcet s Disease You Are Not Alone

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  • I agree and I just dig and sit for as long as it takes to be seen by a qualified opthalmologist.

    Uveitis presents differently in different people and as Beth Howe says present differently on different occasions. The worse the uveitis gets the more severe my overall flare becomes and I now get high eye pressure which causes other health problems.

    Get it checked out

  • how are you?

  • I haven't gone to a doctor,coz I felt too sick to sit in the waiting room for hours...the last time I went I waited all together for 11h...and it made my overall flare worse... I started some alergy drops...to see what happens..but I don't think it's getting any better..so in next few days (if severe form doesn't show up) I'll need to go and sit my time out in waiting rooms...I really can't wait to prescribe my own meds(as a vet I can prescribe certain human meds in EU) and I'll always have a back up steroid drops...coz they help...no dilema there....I'll keep you posted.

I had a member ask me What one medication worked best for me and why — Behcet s Disease You Are Not Alone

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  • Colchicine and methotrexate. The methotrexate was the key I think. I'm feeling better than I've felt in ages. I'm not perfect by any means. I still struggle with other issues like fibromyalgia but overall I'm awesome compared to how I was.

  • Great news

  • There's truly no right/wrong answer- whatever works for you. Clean, organic food is a great idea and method also.

Has anyone been in any study drug program s I went through one for a year that... — Living With Ankylosing Spondylitis

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  • Roze Onder I found the web site you need to go to it's http://www.ClinicialTrials.gov

  • Edward, I'm currently in the secukinumab study. I did my 60 day wash out of humira and I am on week 8 of drug or placebo. I guess it's working wonders for RA patients. I prefer the method of injection easier than the humira injections.

  • I was supposed be be in this study but they never called me in regard's to it that was in August of this year.So now if they get in touch with me about this drug program at least I know someone that having result's with it.Thank you for your feedback.

— Ehlers-Danlos Joint Hypermobility Wisconsin

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  • Dr Tinkles list is 2 years+.

  • Dr. Tinkle was 200% worth the wait for me. It's even longer now...as of June he stopped taking names because his wait list is 4 years long he told me.

  • Melissa, I saw geneticist Dr Carolyn Jones at Rush. She can diagnose it but does not treat it.

Does this happen to anyone else I ll sprain or pull a tendon Today was knee... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • I do that. Sometimes I think it's more that the bones are out of place, but other times it feels like I snapped or overstretched something. Totally incapacitated, but then suddenly it's fine. I don't get that! I did develop bursitis in my wrists and in my heels that took FOREVER to get better though. My wrists are one wrong move away from being back in braces again, I can just feel it that they're not completely better.

    I turn my ankles all the time and it never even bothers me. It usually scares other people around me, certain that I'm going to need to go to the hospital, but then they're shocked that I just keep on walking. I did turn it bad enough a few weeks ago that I bruised the TOP of my foot on the pavement. It was sore for about 15 minutes and then I was fine. So my foot bruised, but my ankle never swelled or anything.

    We rode a "sky ride" at the amusement park last spring and you have to kind of jump off and move aside quickly, I guess kind of like a ski lift. My son and I both felt like our feet broke and we almost fell to the ground. Neither of us could walk for several minutes, but then our feet were fine the rest of the day. I described it to my friend like if you imagine two trains hitting head on and then all the train cars crashing together, sliding in between each other, etc. Seemed like such a gentle ride, something I could do, since I can't do spinny rides or roller coasters anymore. It was great until the very end!

  • all the time

  • Did that the other day with my shoulder, only it took two days.

I hate that sometimes I think from my lethargy and generally feeling crappy and... — Idiopathic Thrombocytopenic Purpura ( ITP)

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  • I am the same and feel sooo frustrated! Feel exhausted, have about a dozen bruises and am convinced my count is low and it ends up 80,000..... I do wonder if my body 'kicks in' when my count is low and by the time I get bloods done it has increased? ? Or.... I feel crap when I have a high count as im not used to it and feel okay when it's low???? Who knows? ?

  • It's so frustrating! Sudden dangerous 17 hour posterior nosebleed this summer was at counts of 20,000, no bruises or anything. Ended up in ER and next day Nplate and IV fluids for dehydration. Crazy ITP!

  • Yes.... I can't believe how crazy this ITP is

Morning not EDS related but since many of us have multiple health issues and... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Omg, I FINALLY found the article I was looking for.


  • Allergy negative also does not mean you are not sensitive to possible allergens. ;)

  • I think the positive control on the skin with nothing else positive shows issues as well. Doesn't rule out mast cell activation disorder

Brenda after reading your post my heart breaks Of course no one likes to suffer... — Amyloidosis Support Forums Inc

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  • Did you get my pm Jim?

  • Yes I am reading it but I am a slow reader so we will discuss it. Thank you so much

  • As far as I'm concerned, each of you survivors is a warrior, off to do battle with the dreaded amy. May you have a sword in one hand and God's hand of protection in the other. God bless you all.

So had an eye exam today my nearsightedness myopia actually got slightly... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • Eye shape and lens elasticity change with age it is normal that from 40 years or so onwards we all become progressively more long sighted thus myopia improves and presbyopia worsens :(

  • Xxxxxxx Yzzzzzz We can always count on you!

  • Yes Michael David Byford We can count on you! Thanks for the explanation. Makes sense.

I thought in would share my er experience with you all so you could enjoy the... — Sarcoidosis Online Sites FORUM

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  • Lol I told a doctor on vacation I was having a sarc flair, he kept telling me it was copd and not sarcoidosis even after I told him I had a biopsy done. Lmao he even talked with one of my doctors from home and still wouldn't listen!

  • My pulmonary doctor told me this as well,but it is also hereditary

  • I don't know any one having this I have never known of it to found out I had it but I believe my grandmother had it they said she had copd never smoked they constantly took places off her saying they thought was cancer to not be an filled her with steroids an anxiety meds. To the day she died

Hey guys — Ehlers Danlos syndrome type 3 UK forum

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  • Definatly eds related i clean my teeth 3times a wk every other night to give chance for gums to recover a bit i find it helps xx

  • Mine arent good and never have been. Chips, lines, fractures, mouth ulcers etc. X

  • Y don't dentist know more about us :(

    I even gave the new dentist leaflet on eds said he knew and yet still butchered me grrr

Hi All I live in Ontario Canada have had AS for 10 years and recently decided... — The Low No Starch Diet for Ankylosing Spondylitis

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  • Hi Valerie, I was able to re-introduce a few things but only have them once and a while. Sadly, I have been suffering with depression for the last year and my diet has gone to pot. I am right back at the begining. I feel horrible, I know I would feel soooo much better if I would just eat according to my body but I just can't seem to get in the mindset. For me, there is a huge difference from when I eat the foods I tolerate to when I eat like a "regular" person. It's tough but I encourage you to try it. And I think being a foodie helps, you start to get really creative and it's a fun challenge. Also, as you eliminate processed foods your tastebuds come alive and greens,fruits taste so much better! Good luck!

  • I'm sorry to hear that you've been having such a tough time, Lisa. I hope you can find your way to a better place soon. Stay strong and thanks for the extra info.

  • Lynn I tolerate all that I juice, but it's mostly my garden greens & herbs + some low starch (and usually low glycemic) fruits for maximum nutrition and nothing bad for the gut bugs. I'm also mindful of histamine rich fruits (ie citrus). And always always organic

Ok all I have been on the waitlist for genetic testing for my EDS for over a... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Oh okay. That I all know so I should be OK. I hope. Thanks for the info! :)

  • Just have the family history like a family tree, the name of the person, age and relationship to you. I also had separate sheets, one of symptoms, diagnosis', medications, past surgeries, treatments, test and scan/mri results also specialists reports. I had copies of all of these to give to them.

  • I think there's only one type that they have found a gene for, diagnosis is made by history and examination

Hello dearest beauties and gents Ok I got my functional medicine dr to... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • ~ Carrie Carnes Kemper if you are on thyroid medication, keep taking it with LDN. LDN doesn't replace it; you may need to reduce the amount you are on, but most often you will continue to take it and not stop taking it. I have read a few stories where people say they cured themselves off of thyroid medication, but I'm guessing they didn't have Hashimotos.

  • Xxxxxxx Yzzzzzz I too have heard of functional MDs charging a lot of money re a consultation to prescribe a med but doesn't know much about it. Sadly so many take to the Internet for their source of info but even then, the warning signs for those on thyroid meds are clear, start low and monitor how it goes. You may need to lower your thyroid meds when taking LDN but you should be closely monitored. When do you go back and see this Dr as a follow up?

  • So happy for you. The LDN took a couple days to do its magic. I started August 21. I just upped it to 2ml today

Has anyone had to get an advocate for school. How did it go if you did — Mothering Juvenile Arthritis

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  • in minnesota, we have pacer center, they are an advocate for children and they know the lawsand they can help you get an IEP or 504 depending upon your childs needs. usually, medical diagnosis's get IEP. if you dont live in MN, your state should have something similar to Pacer.

  • A letter from Rhumetology explaining her illness and modifications of how they can help her. That way it's not just coming from you. I live in nj too and it's tough to get a 504 even if your child needs it. Good luck!!!!

  • I had a meeting last year and was denied. They said it did not interfere with her education. We had the rheumy's input, proof that she ha just recently finished pt. This is why I am wondering if an advocate would help. I am a teacher myself and know the longr you wait to put it officially in writing, the less likely it will happen.

Thanks Ellie for sharing your story on NPR I heard it yesterday You gave me... — Bee Venom Therapy for Lyme Disease

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  • This protocol is easy to do after a learning curve- I get all my stings done in 20 min as I have improved so much I need to get to work

  • Thanks, Ellie, for answering. I'll have to read the process in more detail. I just learned of this yesterday so I guess I need to learn more. Thanks, Jennifer, for your input.

  • Welcome Cindy!

This might be an odd question but has anyone noticed their child having a not... — Mothering Juvenile Arthritis

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  • Put a few drops of lavender essential oil in her shampoo and conditioner! It will also help prevent the hair from falling out! We also use a tiny dot of coconut oil as a leave in conditioner

  • My non JIA daughters scalp gets like that. The only thing I have found that works is selsum blue shampoo.

  • We use the tea tree oil shampoo gets his hair smelling good and keeps the scalp moist

I just made an appointment with a hand surgeon who was recommended by two... — DART - Dupuytren s Advocates for Radiation Therapy

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  • It is progressing, but not at an alarming speed. When I was first diagnosed, I did not know anything about this disease and honestly didn't know what to ask the doctor. He, in turn, really did not explain much to me. I left the appointment in a bewildered state. I have learned more from this board and others and will know what questions to ask this new doctor.

  • Yes!

  • Molly, did you find our list of questions in FILES? We have one to take to your hand surgeon and a separate on to take to your Rad Onc. Keeping good records about the RATE of the progression is important. We have a Photo Album that illustrates how to measure your contracture and if you keep a journal of any changes that may be very helpful info for your doctor. Best of luck!

I have suffered from this condition for approximately 14 months I have had some... — Costochondritis is a pain in the chest... literally

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  • Sheri does the chiro use LT instead of manual manipulation? I've always been leery of getting "cracked" aka adjusted. So I've never been to one before. But some folks swear by it.

  • He does both Laurie and it seems to work.

  • That's so wonderful you've found relief Sheri! It seems a holistic approach makes a difference for folks.

Good news hand surgeon sending me back to oncologist says im not best candidate... — DART - Dupuytren s Advocates for Radiation Therapy

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  • My rt doc was amazing. Its just getting to that appt.

  • Lol, went and had all these labs and stuff done. Called oncologist and scheduled. He was like why in the hell did she order all those labs and xrays. You aren't having surgery. Kinda what i was saying.

  • Any news?

Still feeling absolute love for this group and the protocol just have some... — Ehlers Danlos Syndrome and the Cusack Protocol

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  • Thanks for checking in and updates - wishing you good. Things soon

  • Hugs ... I also feel this group has been so amazing for me, that I wish I could help out more.. But life seems to always just throw craziness into the plans.. My newest is that our six month old Samsung refrigerator is sounding like an airplane. I have to leave the kitchen area due to the noise, and unfortunately my computer is set up near the refrigerator. This is after multiple "repairs"

  • I'm sorry , Pauli. It does sometimes seem that with progress also comes set backs. A friend of mine calls it 'contrast,' the bad stuff making you appreciate the good all the more. Sometimes I tell her I could do with a little less contrast, thanks. I hope that frig magically gets its groove back and rights itself.

shared a group to the group: Butterflies - Lupus Survival Group. — Butterflies - Lupus Survival Forum

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  • Happy to have you join us Nancy! Hope you can find a way to help your new kitty gain some weight. Bless you for rescuing her. -hugs- <3

    I love Jasper's photo too Debby! I also love how Jeanne did his bio. We learned about the JRT history as well as how Jasper was. I've fallen in love with him and am grateful for the info on the breed. <3

    We have such a beautiful group of pets and parents. ^_^ ~N&C~

  • Nichole, how can I nominate my little shih tzu who will be 15 in October for the October pet of the month? Thank you in advance. With chemo fog, I'll be damned if I can remember (I'd be damned anyway lol ).

  • *giggles* Lora, all you have to do is post her photo and anything you wish to say about her on the Pet Of the Month Contestant's thread for October. It's pinned to the top of the wall in the Pets group. The instructions for how the contest works are on that thread. ^_^ <3 ~N&C~

Hi costochondritis folks I had this crap going on 7 months now and yesterday... — Costochondritis is a pain in the chest... literally

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  • Thanks Laurie McCormick Copley

  • I am so depressed! Only fellow suffers understand what it's like not to feel well every day. 13 yrs with this horrible condition. Tired of complaining as most people do not understand what we are going through. Have tried everything to no avail. I pray for a miracle!

  • Xxxxxxx Yzzzzzz how did you no that it inflamed your digestive tract