New and in the diagnosis process

Hi everyone! I am so grateful to have found this site!! I hope you don't mind me being here even though I am in the US. I don't have my diagnosis yet, but we are in the process.

My name is Wendy, I'm 30 yrs old, mom of 3 kids (3, 5, and almost 12). I stay home with them now which is a blessing as I'm sure I'd have gotten fired long ago if I was working! Although my husband works 5-10 days out of town and then gets a couple days home if he's lucky. So things are kind of crazy, but at least 2 of the kids are in school all day, and my older daughter helps me out quite a bit. Today I'm taking the 3 yr old to a preschool to check it out. If we like it, he'll be going 3 half days a week so I have a chance to go to appointments, rest, etc, etc.

I'm not sure exactly when I started getting sick... I think it started so gradually with a few big events thrown in, that I can't really pinpoint it. I do know that after I had my 5 yr old I started having trouble with the joints in my hands. I couldn't grasp a paper bag full of groceries, it would just slip out. At the time my husband was in the army and went to Iraq when the baby was 5 months old. So that was stressful of course, and I know at one point a few months later when I was so sleep deprived from the baby having trouble sleeping, that I got really sick and that's the first time I remember having ulcers. I had them in my nose, in my throat, on my tongue, in my hair that were so ungodly painful, and one genital ulcer. I was so sick at that point I had an infected lymph node by my ear that I had to get on antibiotics for. Which cleared up the infection, but not the ulcers. Dr said they must just be pimples or a virus or something, he didn't know. I also had a time where I was in so much pain that I thought I must have had an ovarian cyst that ruptured or something. Had an ultrasound and they said there was a small cyst, and looked like there could've been one that ruptured, but they couldn't really say what it was they saw. (Now I'm thinking that could have been just an ulcer, not a ruptured cyst)

So since then I've had times where I have ulcers on my tongue quite frequently, and sometimes in my cheeks as well, but they hadn't been as severe. I've always had them coming and going in my nose and they are so painful. I had written them off as being pimples, but couldn't figure out why I was getting them and how come they were so awful and took so long to heal. Sometimes I have one that takes a month to heal, then I just get a new one on the other side and it just goes back and forth.

Joint pain has been pretty constant, but not debilitating. In fact I've always loved exercise and have kept pretty active and in shape up until recently.

After I had my 3 yr old I just seemed o be so exhausted all the time. I of course thought it was just having an infant and 2 other kids and all moms must feel the same. I ended up getting so depressed I was almost having psychosis. Went and got on antidepressants and that helped a bit. Kept me feeling sane, but still worn out. Like, tired beyond anything I could explain.

Since then I've had "foliculitis" on my backside and sometimes my back, stomach, legs and arms. They appear randomly, stay as open sores forever after being a painful blister type thing that breaks open. Then leave a scar. They are hideous and embarrassing. I also started noticing that I was having a blister type lesion any time I had a blood draw or IV.

Then in December of 2011 our family came down with a nasty stomach bug, I had ulcers like crazy, and my sister was in the hospital with MRSA in her c-section site, and my parents had her newborn at home and we all were taking turns taking care of him. So needless to say that was a lot of stress and it took a HUGE toll on my body. Haven't felt good at all since then. In the spring I was really sick and had ulcers so bad in my throat and on my tonsils that I couldn't even eat. Couldn't drink coffee or anything, just water and toast. Had another genital ulcer, and was put on antibiotics that just made me have horrible stomach pains.

Doctor started to want to figure out what was going on. She ran a bunch of tests that all came back normal except low vitamin D, so I started taking a supplement and my labs have improved but I don't feel any different. My thyroid levels were a little off so I went to the endocrinologist and he put me on synthroid. Within no time I was feeling a bit better. My mood improved, I lost some weight, swelling went down that I didn't even realize was there. And I thought great, I'm just hypothyroid and we are fixing it! Wrong!!!! I ended up with another awful flare that included all my veins all the sudden turning bright blue and huge almost over night. I developed Raynaud's at the same time, also practically overnight. Started getting headaches and felt like my veins hurt and my feet kept turning all different colors. Because sensitive to strong florescent lights (I look like I have a sunburn and feel like my batteries have died after going to the Dr or going to Target, etc) and the same with the sun. Dr decided to send me to the rheumatologist as she thought I had lupus even though my ANA was negative. First rheumy was horribly rude and told me I just needed to exercise and not sit on the couch!!! I said no, I am here because I hurt so bad I can't exercise. At that point I was crawling up the stairs, couldn't stand up after my shower, couldn't do much physically without having horrible joint pain and muscle pain and weakness. I was so upset I cried all the way home from that appt. I got a second opinion and he was kind, listened to me and put me on lyrica to help with the pain so it wasn't waking me up at night. Said to keep coming back and even though the labs didn't show anything we would figure it out.

Lyrica has helped with things I didn't even realize were wrong. Like, I had been itching like crazy and felt like I had bugs crawling on me. I had stabbing pains in my feet, etc, the list goes on. And a lot of that has gone away since taking the lyrica, which I guess is for nerve pain, so my Doctor wanted me to go to a neurologist, and we realized that I wasn't having tooth pain, it was trigeminal neuralgia. Which I now have on both sides, but luckily only get one side at a time. The lyrica takes it down a notch, and then I take 800mg motrin and 500 vicodin and that helps me get through the pain.

So follow up with endo, and he says my labs are all wrong, whatever was wrong wtih me, it's not my thyroid, stop synthroid right now, no taper. Oh and ultrasound shows small goiter but it's no big deal. So I stop the synthroid, immediately gain all the weight back I had lost, and my mood goes down the toilet again. Who knows what the hell is going on with that. But I don't go back to him until Spring!

Had another horrible flare with ulcers down my throat and felt like they were in my ear canal as well. My tonsils always seem to have ulcers when I get bad like this, and of course in my mouth and on my tongue, etc. I even had petechiae on my leg and toes and fingertips that turned into little spots that peeled, not quite ulcers but almost.

My primary care Doctor sends me for an MRI since I am having trouble balancing, having lots of cognitive issues, bladder issues, etc, etc, etc. Still waiting to hear results on that. And I go to the neuro in a couple weeks.

Rheumy says to come back when I get sick and have any rash or sores or anything and he'll see me right away. Trouble is, I ALWAYS have the stupid foliculitis sores on my backside, they just heal and new ones show up in a constant cycle. And I haven't had any big ulcers in my mouth since I've seen him last, except a few on my tongue that healed over the weekend and were nothing remarkable by the time he could've seen them.

I'm always so drained and fatigued and just exhausted. TAking a shower and getting ready for the day is enough to leave me out of commission for hours. Going grocery shopping puts me in constant pain for days. I just feel like I want my life back. This is no way for someone my age to feel. And my poor kids just want a mommy with more energy.

So, I get ulcers in my mouth, including my throat, tonsils, and tongue. In my nose. On my scalp. On my skin. Then the random genital ulcer, and a couple recurrent ones on my rectum. Which are the worst I think of all of them. I also think I get them in my urethra, but have no proof since they arent visible. I had a cystoscopy done to check out my bladder since I'm having so many issues, and afterwards peed blood for days and felt like I was shooting out razorblades for a week or two. But of course my bladder looked fine at the time. I also had a lithotripsy done to blast out some of the 12 kidney stones they found on CT. After I had that done, I was on the couch practically unable to get up for 2 weeks. I also had a bit blistery thing where I had the IV, and had another round of mouth ulcers. I'm thinking I may have them in my GI tract somewhere, since I have times where I bloat and have pain anytime I eat, and have rounds of diarrhea that last weeks at a time, and occur when I have my rectal ulcers. Lots of fun symptoms!!! Also seem to have trouble swallowing and have horrible heartburn.

So, my next step is waiting for the inevitable round of ulcers to show the rheumy and have him do the pathergy test since I seem to react to needle pokes. And since we've ruled out everything else, then this should be what he needs to diagnose behcet's. I also have to see the neuro later this month to see what he thinks. Primary care Doc thinks it could be MS since I have a family history, but I'm wondering if it's neuro-behcet's.

Just wanted to introduce myself and share my story.

10 Replies

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  • Welcome Wendy

    Regardless of your diagnosis we are a nice bunch of people and are always here if you want a whinge and a moan. Your symptoms do sound like Behcets. I am 41 and diagnosed 3 years ago after feeling pretty rotten for almost 5 years. Hopefully you will get the answers you need but always come to us for chat if you need it!

    Hugs

    Angela

  • Yes, a very warm welcome Wendy - I'm sure you will get more responses but sometimes reading a long post takes us a while and even longer to think about and answer. We are all with you though so do keep posting.

  • I'm thinking and have been since first reading it Wendy - but a warm welcome to you x

  • Welcome to the forum

    It is great to hear from poeple in other countries but of course it makes no difference to this horrible disease, where you come from.

    It does sound like behcets but because there isn't a clear test as such, it all has to be pieced together over time. It does look as if you are on the right track though.

    I have the folliculits on the backside and have deep scarring from it having dug deep into the tissue and this flares up frequently....very painfull. These flare up far more than the mouth ulcers really.

    The exhaustion I think is something we can all identify with and I haven't any children living at home now...so it must be doubly difficult.

    Use us as a sounding board and to help you through the diagnosis process as most of here know just how difficult it can be to get the final yes.

    Look forward to hearing from you again. I might add some more info as we go on, but just wanted to welcome you

    Andrea

  • Hi Wendy

    I've had very similar ulcers to the ones you have been describing. Makes me mad when I read about the horrible rheumatologist - my experience was with dermatologists but found some nice ones who have made up for all the bad experiences.

    Hope you get your diagnosis soon and welcome to the group.

    Lesley

  • Hi Wendy,

    Welcome. We are an empathetic group who are all (I think) diagnosed with this horrible disease. Although I am not a doctor, your symptoms sound oh so very familiar.

    We will all be only too pleased to help you, but of course we cannot give you any actual medical advice, it is just that we have all gone through the nightmare of having to wait ages for the Behcets diagnosis. What a relief to eventually get the diagnosis because hopefully the correct treatment can start.

    I will be thinking of you and your young family, especially at this holiday season when so much is expected of us mothers, and in my case grandmothers! Try to rest when ever you can.

    Best wishes to you. Remember we are all here for each other.

    Suzanne

  • Welcome Wendy, you have found a wonderful group here, no matter what part of the world you come from. x

  • hi wendy,

    i am in the US also. i have heard of a dr Yatzi in New York that is a Behcets dr; but with your kids etc i would see if difficult to see about an appt with him. also there is a person who has written two books Joanne Zeis that are pretty informative when it comes to symptoms etc.

    my best to you; i have a 3yr old and a 5yr old and work full time as my husband cannot because of a back injury years ago

  • Thank you for such a warm welcome! It helps so much just reading through posts, I feel like answering "me too!" to almost every one.

    Sorry my post was so long. Once I got started, it all just came pouring out!

    I did end up seeing the nurse practitioner yesterday as my GP is out this week on vacation. Turns out I have a mild case of bell's palsy and am starting a steroid dose today. So maybe it will help me feel a little better all over! Just another thing to add to my growing list of symptoms.

  • Hello, sounds like you're in the behcets gang!!! Being diagnosed is alone is a vast task not for the the faint hearted!! Fighting with pain fatigue and ignorant doctors! However there is one plus point, the great people on this website all over the world, who will listen to your fears, rants and occasional laughs...

    Take care x

    Anna

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