I had my dentist appointment today and regrettably it was my first in 2 years — Behcet s Disease You Are Not Alone

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  • I figured it was Beth Howe. Especially because only 3 were level 2 and 3 and all of the others were only level 1 which makes me think they are more fresh and have popped up within this last year like my other symptoms. The dentist didn't know of BD so he made no connection.

  • It is SUPER common!!! I have had so much tooth decay in the past year especially but in the past four I'd say, all from medication side effects mainly but also as a result from the inflammation caused by Behçet's. I unfortunately have to have ALL of my teeth pulled! This is something I'm having such a difficult time with. I have handled everything bd had thrown my way relatively well , I believe, but this is one thing that I am finding is so hard to cope with.

  • My oral surgeon told me that dry mouth from meds is the. WORST thing that causes irreversible tooth decay. I just cried when he told me I would need all my teeth pulled because even he said they looked so great to the eye , but on x ray they were so bad he said I don't know how aren't in excruciating pain.

How many of us see a therapist My rheumy wants me to start seeing one... — Butterflies - Lupus Survival Forum

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  • She is right that I have hope to be how I was before I got bad. She said she's worried about me. My mom and my BFF have said the same thing. I guess I should start seeing someone.

  • I see both a psychologist and a psychiatrist. It has helped me a lot. But then again, I also have bipolar disorder and PTSD.

  • I do and I love it!

was wondering what exactly MRI A brain sag flair Vth nn epilepsy protocol mean — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • Also.. i thought th a t might be the case re: MRI being uncomfy..

    Yeah. I get very sore holding myself still - or even relaxed lying or sitting for too long. Joints dont like it at all and muscles tend ro tense up to keep things steady i think. Plus lying say - on my back puts a pot of pressure on hips and lower back

  • Roughly how long did your MRI go for, Lucy?

  • I only had my lumbar and sacral done, and in two different appointments each took maybe 15-20 mins. Maybe ask if they can divide it into a few appointments, but if I were you I'd try to get the whole thing done in one go. They give you a button to push if you need help to hold while in, and I think maybe if you ask they can take a break part way. I am waiting on my upper back and requests take forever so if I were you I'd try to tough it out, deal with the painful aftermath just the once and get it over with.

Hey everyone just wondering if there s anyone in the South Somerset Dorset... — Behçets Syndrome Society

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  • Hi I'm somerset☺

  • No, I'm in a village called Rode Angela Elaine Jones, used to be well known for it's Bird Gardens !! It's 25/30 mins from Chippenham ! Be nice to meet up at some point if you fancy it ?

  • I'm free most of the time bar hospital appointments so yes it would be nice to meet up somewhen.

Am I the only one who questions my ability to deal with Lupus mentally — A World of Loving Lupies- A Lupus Community For All

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  • Prayers and love ! I think we all go thru this! I have my pity party days when I say I'm tired of this and never going anywhere ,feeling sick, no energy,but I pray and think of the positive things . Praying for you and this is a good place to share you feelings cause we get it!

  • Everyday four years in; sometimes I want to cry, but all my tears are gone

  • No, I think that's a normal emotion. I don't really think there is a wrong emotion, it's just how you deal with them that matters that's why you need POSITIVE groups. If you have people who are in groups not giving hope. I wanted to give a woman a phone number and too much info about lupus. Now we can get disability, so what can I do. Beware of sights that aren't supportive. You ever hear one bad apple can spoil an entire group. YEP. Stay positive. Do you have the Lupus org. Free email? They are giving millions to try to fund to help us.

for those of you with intestinal BD. What was discovered on colonscopy — Behcet s Disease You Are Not Alone

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  • I had esophagitis and numerous apthous ulcers at the terminal ileum in small intestine

  • Ulcers throughout my digestive tract, multiple fissures through the years. Very sensitive to foods, IBS symptoms. Always had stuff show up on my colonoscopys and endoscopys. Biopsies always show inflammation.

    Neuro-bd: meningitis/ meningoencephalitis multiple times, never ending horrible headache that nothing touches, right sided numbness and weakness, slurring of speech and forgetting words, giant gaps in memory, blacking out, passing out, stroke like symptoms, dizziness, vision issues, seizures, central nervous involvement, autonomic system involvement, and lesions on my brain that showed up on my MRI's. Spinal fluid showed stuff also.

  • Neuro-cognitive loss (dropping from superior to borderline), attention to detail dropping from 90th percentcile to the 5th percentile, language loss, (at time it sounds like I have had a stroke but i haven't, affects written language too) short and long term memory loss, neuropathy, seizures in the past, BD headaches, executive function loss, dizziness, tinnuitis, 2 strokes. Until the strokes the MRI was normal, But neuropsychological testing is what showed a lot of the loss.

Here s a question dx d with CNSV in 2008 after horrible episodes dx d with... — Vasculitis Foundation Discussion Forum

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  • I read somewhere it's not uncommon to have more than one autoimmune disease. But i hear you. I am so sick of this crap.

  • MPA 2013: I also have "other" issues, but I can't get any specialist to say it's related. &u// $#[+.

  • It seems like there is always a new place to hurt; places I never noticed even existing before MPA.

Good vibes please Not the dragon so much just as all my other illnesses acting... — Life with Adult Onset Stills Disease

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  • Don't in-laws just suck sometimes?

  • Indeed. I'm used to it from one, and she does it somewhat deliberately. With my FIL, it's more related to issues of aging and addiction, which has blindsided us a bit, as my husband's stepmother has been hiding how serious the problems are. Just praying that I can keep it together because I know that I am already fragile, health-wise, and that the dragon just loves to feed on stress. Thanks for listening.

  • Xxxxxxx Yzzzzzz! That's what we all are here for. Each other. I've always been told by Drs that stress is a major trigger. Be well. Hugs

Have you fixed your leaky gut I know that leaky gut syndrome can play a... — Sjogrens, Lupus, RA, Scleroderma Low Dose Naltrexone (LDN)

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  • Pam, check out liposomal curcumin on Amazon. It has helped me. Made a dent in the pain.

  • I've also had the Genova Diagnostics NutrEval and GI Effects Stool Porfiles

  • Xxxxxxx Yzzzzzz's the difference in liposomal curcumin and turmeric/piperine?

Gayla Johnson Fredrick you posted earlier about hands cramping with your garden... — Dupuytren s Disease Support Forum

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  • So do you think the pain that you are having is from inflammation, arthritis or the Dupuytrens? Or maybe a combination? Our hands are such a complex appendage - hard to know when we get these symptoms what is the cause. Glad to know your Meloxicam works! I've not taken that - does it target inflammation?

  • It's all due to the disease!! The Meloxicam is for inflammation. I discovered this after my rotator cuff surgery it's awesome!! However I've been told it can do some kidney damage down the road so I try not to take it very often maybe once a week.

  • There are battery powered tools also. I've used them for cutting lawn edges and one for cutting thin twigs. I was able to hold the button on. Certainly easier on my shoulders and hands.

This is my sweet girl diagnosed today with poly JIA We are reeling but she s... — Mothering Juvenile Arthritis

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  • Doesn't sound hippy to me. Happy it worked for you! Sent you a pm.

  • Mine had the strong meds for the first years and then went into remission but since she turned 13 it has came back.

  • Jody west Myers can you please add me too ?

Wandering if anyone had had reaction to sulfasazine and if not then did the... — SAPHO Syndrome Support

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  • I was on it for about a month, but I could not tolerate the nausea. Could not function, (work) feeling queasy all the time.

  • I never felt that way. Just the bad skin reaction. I wander what really helps. I have continuous chest pain for 4 yrs now without going away at all

  • Prednisone at 5 mg a day and doxycline have helped me.

So fed up. My husbands back is flaring so he s stuck in bed and can t move — Costochondritis is a pain in the chest... literally

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  • i feel the same way with my husbands fibro when the seasons change, but i just cant do nothing for him and it angers me so, his pain becomes our pain , the family.

  • Thank you :)

  • Yep, thats it, im so angry! I have fibro and eds aswell as costo and struggle with everything. The worst thing is seeing him in so much pain, im in pain all the time and have sort of got used to it but seeing him like this is awful and there's nothing I can do :(

So I have strep throat was prescribed amoxicillin What exactly do antibiotics... — SJÖGRENS SYNDROME UR NOT ÄLONE

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  • I called my on-call dr. Nothing she told me that I hadn't already known or tried. Going back to the dr in the morning since I finished my week or antibiotics already. She said I may need a shot... I'll take anything at this point to get relief

  • Poor girl. Hope you're feeling better today.

  • not in the slightest :( now they're thinking I've somehow got H1N1.. not sure where the heck that came from.. unless when they had me on the antibiotics and my immune system has been shot, i went to the store or something.. i am at the pharmacy a lot.. but picked it up. idk. I have sores in my mouth that are white and hurt so bad I can't eat. dr said i lost 4lbs since last week, well DUH when you can eat anything and throw up when you do……..

Took my middle sized musketeer 11 to the docs today as he s been having... — parents of children with hypermobility syndrome

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  • I have this..... my doc when I was a child called it slight fainting spells as I was conscious and aware but everything was black/flashing.... There were/still is days where I end up in the floor but no where near as much as I did as a child. My blood pressure drops when I stand he said this was probably the cause. Never been back with it as I learnt to 'deal' with it. If it happens now I just sit myself straight back down and wait for it to pass x

  • So its continued through to adulthood? Glad you're managing to get by with it, but must be a pain for you. Seems like blood pressure is a major cause .

  • Mine has continued into adulthood, I scared my brother and sister when I was younger as I ended up in the floor but because I was trying to get up and couldn't see anything my arms where going everywhere!.... It is a pain and also a very strange feeling I can go a while without it happening then it'll start and go on for weeks then stop for a while again, the blackout/flashy faze that is.... My BP still drops when I stand, my pulse rate can go from 64-79 sitting right up to 118 on standing! It's very strange x

I am fed up of falling over all the time Quite often up the stairs Sometimes... — Ehlers Danlos syndrome type 3 UK forum

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  • I understand about your fear of dropping your son.... I experienced similar so many times. I fell up the stairs with my newborn in my arms.... my husband saw me...I panicked about my boy and he said i never even jolted him. Mum instincts will always take over. With my second baby I even managed to wear him in a baby carrier.... oddly I used to trip/stumble as soon as I took it off. At a recent operation I was asked why I was a 'falls risk' and they wanted details of my recent falls....I stumble and bump so many times I couldnt explain details as its part of everyday life. Its eased a bit with wearing ankle braces and sadly my 5year old is exactly the same...so many bump letters from school. He has orthapeadic boots and Im getting measured up today for similar...hoping it might increase stability and reduce pain.

    I cant offer much advice Im afraid.

  • As for what causes it... combination with me : instability of whole body, dizziness, fatigue and poor awareness of where body is (technical name is something like 'poor proprioceptive sense').

  • Yes it's EDS related - happens a lot to me and I went on this EDS education afternoon and the physio said it's because our ligaments don't hold bits of us in place and our brains think they are in a slightly different place so we fall and are clumsy.

Hello 9 21 15 I had Splenectomy. Since then my numbers have been above 300 000 — Idiopathic Thrombocytopenic Purpura ( ITP)

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  • Me too. I'm just trying to get the thought of they are up for now out of my head and be positive

  • I dreaded it too but honestly being back to work helped me to keep some energy up. Best wishes!

  • Thank you Amanda Huml... I hope it helps me... I have a desk job so I get tired. Weird how that works. I have had 4 hip surgeries.. So I have to work a desk job

After some advice — parents of children with hypermobility syndrome

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  • Exactly what my daughter did x

  • 2.5 year olds don't understand the concept of lazy - she obviously has a reason why she won't walk...... Bless her x

  • My son was 4 and still in a pram if you waking small stops for rest do help you need to build the walking time up with less breaks that's what I done my son is 7 now has good days and bad days we've just got used to having to have regular rests x

I hope y all are having a better day than I Pain is one thing I can deal with... — A World of Loving Lupies- A Lupus Community For All

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  • My Allergist advised me to take 1 per day Cetirizine 10 mg .It is over the counter in the drug store next to the Zyrtec allergy meds also I take Hydroxzine HCL 25 mg for intense itching. But w/the Cetirizine daily you won't have no itching often.

  • Do anymore rash starts as two red bumps that itch? Every time they come it's two of them, i thought that maybe it's mosquito bites, but then I'm in the house every time I get them. They really itch. and they leave a spot when they heal up. I have two on my stomach, two on my left leg, and two on my left foot. feeling

  • I've had the itch to wake me up at night. No fun.

So we moved to a more accessible had a bilevel which was killing me house in... — Ehlers-Danlos Support Worldwide EDS POTS MCAD Chiari

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  • This would be easy if a caregiver needed to help.

  • The issue I had with the open showers is its COLD.

  • Yes! I had to use a regular plastic bench once after a major lumbar fusion and it was awful! I only used it that one time. I'd only use the bench for shaving and quite possibly, only to put my leg up on to do it

I have been in so much pain with my neurostimulater I keep getting it adjusted... — Osteoarthritis sufferers and rumatic arthritis suffers

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  • If he's like most men, give him a coloring book and a BIG crayon!! Lol jk

  • Things are better in the home. John is recovering very well. My pain is the same but I am doing more around the house. I notice the more I get off the couch the better my knees are. I saw some tips on coloring and I am going to try them. I also ordered an electric eraser. Yep I still go out of lines lol.

  • Really, electric eraser??? Lol. Didn't know they made such.

Wondering if anyone else has the musculoskeletal chest pain and what you use... — Behcet s Disease You Are Not Alone

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  • Sometimes alternating between ice and heat can help too.

  • Oh, that does sound nice. Too bad we don't have anything like that around here :( I love my chiropractor. I go sometimes twice a week already.

  • yes, so painful...hot soaks in the tub, ice, heat and pain meds... once the inflamatio settles down it feels better, just such a hard thing to tolerate! gentle hugs xx's

Am I expecting too much — Osteoarthritis sufferers and rumatic arthritis suffers

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  • Hate to hear this.

  • you need more information from those giving this treatment. You should find out if that is a 'normal' reaction to the therapy. ask what they mean by 'we got work to do' what work and how long for, would you get sick leave and sick pay from work as well... ring them and ask them! good luck.

  • Work is great, paid for my entire time off. Including bonus

I live in an apartment My LLMD wants me out of my apartment asap due to my C4A... — Healing Mold, Lyme and Biotoxin Disease

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  • I think there's a really good chance there's mold if there's a leak and they don't seem like they're doing what they're supposed to I'd try to get out of there if possible

  • You are definitely living in mold. Been there & did it all. I am now being treated for Black mold in my body. I grabbed a few clothes &

    Left my place & everything in it 8-1-15. Trust me, if it is wet & you know it. Call a mold inspector, & your manager will have to move

    You & get out before you or your family gets

    Any sicker. Call a mold Inspector, it is worth it

    & you will probably be reimbursed. Money

    Cannot buy you, your health. I wish Drs &

    People were more Educated on mold! I wish you the best of luck. Remember Mold Spores are invisible to the human Eye! God bless!

  • Invest in a really good medical grade air purifier. That will help through all these tough in between times. Essential for all mold patients. IQ Air has the best on the market, it cleans 100 times more than the standard air cleaner. If you are interested check out their website and let me know and I'll get you a 5% discount. For me it has been essential. I can finally breathe after 12 years of chronic sinusitis. Good luck!

I need to vent — A World of Loving Lupies- A Lupus Community For All

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  • You are definitely in my prayers. It gets better, it may not be in your time but it will be in Gods time. He never fails. I've been fired more times than I can remember because of my lupus. I've also lost my apartment and my car was repossessed. It took me awhile to see that I ONLY lost material things which can and will be replaced in time. The important thing is to find what makes you happy, keep walking in gods light and by faith in him and you will persevere. Usually SSD only approves when you have an attorney. So I would try to find an attorney.

  • Thx Chloe. I love your name BTW. I have an attorney. Its just been hectic waiting. Thank you. You're in my prayers as well.

  • I hear you baby that's what they do to us we're sick and we can't do for our self and they'll take us down to nothing before their deny us what is owed to us. I have lost my insurance three times this year. denied Medicare and Medicaid even though they knew my illnesses but they didn't care. I couldn't go to the doctor I couldn't get my medicines so I stay sick. got my insurance back in October first time I was able to go to the doctor was Monday. and he was so mad at what I have been going through but I'm like doctor can you help me? this disease takes everything away from you and what you have left the government takes the rest of it. praise be to God my father is my rock and my foundation.without him I would have given up by now. my sister I'm praying for you and I love you.