Advice- newbie

[lizzykarma]

General advice

in june literally a month before my 27 birthday i became ill. i went from being a party fun loving mum of three, to being in a wheelchair.

i had full arthritis, myocarditis, mouth and genital ulcers. (my partner doesnt have herpes and has never had anything despite no protection- we have been together for many years)

the pain rotated around my joints for around 12 weeks. iv been on 1000mg naproxen. last fri i was swapped to 50mg diclofenic and have been walking again...yay.

They suspect either Bechets or AS (ankolysing spondylitis)

Iv had constant mouth ulcers since june, about 10-20 in my mouth at any point, along my lip, cheeks, tongue, throat. and monthly bouts of genital ulcers/warts? that are very painful.

I was admitted the second week in July at the royal with suspected Rhuematic Fever, they then decided that this was not the case. I informed them about relations that have AS and Behcets. (mat gdad AS, Mat Gmum BD).

I was taken to the infectious disease ward i was then discharged four days later as i didnt have a sore throat? i never went in with a sore throat i went in with ulcers on my throat and other symptoms.

i had a ref to a rhuematologist 8 weeks later.

My drs started me on Naproxen and omeprazole the day after i came out of the hosp so early july.

8 weeks came and i excitedly went the rhuemy at broadgreen hoping for some answers. It was his first day... sadly for me.... he felt my knees once. Said its not mainstream althragia, and that it should go by itself. i mentioned my other symptoms, headaches, sens eyes, ulcers psoriosis and he stated it would just be an over reaction on behalf of my body.

I mentioned my relations 1 mat gdad, four mat aunts and 3 mat cousins having AS and my pat nan having bechets. he stated women cant get it and their rhuematologists were mistaken. he discharged me with a prescription for 10mg Ametripteline for pain management.

I went back my own drs who re referred me to rhuematologist, but at Aintree as broadgreen and the royal are linked hospitals. my appt was for the 26th sept, they then sent a letter saying they had moved it to the 7th November. I had to wait that long!!!

Last weds i lost vision in my right eye for just over 5 minutes. (weds the 19th sept)

on the fri i went to my drs. he examined me. changed my meds from Naproxen to Diclofenic and told me to go to st pauls eye hosp.

I went the eye hosp and they said i needed an appointment as soon as possible (today- fri 21st sept). They examined my eyes and prescribed Asprin 75mg daily.

Monday17th sept i went tot he cardiologist. iv had a 24 hr tape and several ECgs as an inpatient and out since june. apparently my heart is beating faster and then goes slower and so on. dances to its own beat as he put it. he asked whether it was affecting me in anyway and obvs i didnt at the time think it was linked so said now. he did say i could have beta blockers however they have side effects and if it isnt debhilitating in any way then it was down to me. i declined as obvs i wasnt very aware tbh and he discharged me. he had aid the chest pain didnt sound worrying.

today came and i went the eye hosp in the royal liverpool hospital again. They did the fluoreceucin test (dye into blood) all the blood vessels behind my eyes were seeping and bursting. They immediately suspected a TIA. He telephoned every specialist that had seen me for a conference call then walked me round to the Acute Medical assess Unit.

I had a vascular scan of my throat done. Other blood tests. (6 diff needles). and the head Rhuemy from the hosp came down and has given me an appt for thurs. Im not under the AMU and the Rhuemy and the opthamology dept long term. i have to attend monthly and then they will see how my care goes.

I have been put on 300mg Asprin a day for 14 days then to go down to 75mg. 50mg a day predisone (steroid), 40 mg Omeprazole. and i am still on the Ametripteline 10mg a day with a view to increase. im really nervous now every time i get the chest pain that iv been having lol but i guess thats only natural tbh.

Does this sound similar to people here?

Iv had a hell of a time since June. I cant say its appeared from no where. iv had IBS style issues all my life, iv had the camera down n up more times than i can remember. I had a stomach ulcer at 14 yrs of age. my eyes are sore constantly and feel like pressure type headache behind them. iv had constant migraine, however iv suffered with migraine in the past and was on ametripteline then as i had it with aura (floater and swollen eyes then).

Iv obvs recently had heart probs for the first time. but iv always had sharp chest pains i put down to my asthma and ignored. Iv always had back and hip pain on a constant basis.

But iv also had periods of singular joint pain, like a sore kneee or wrist for no reason and they would just say swollen but must be a sprain and so on right the way through my childhood and teen years. iv had psoriosis in ears, brows and on scalp as long as i can remember. and iv always suffered from severe mouth ulcers, but this is like something diff, they will die down for a day and then flare up for a week die down for a day and flare up. They are so painful sometimes its all i can do to drink soup through a straw.

im just so tired now and really want some answers.

it was my dentist that suggested bechets as nan had never admitted to it until i mentioned it tbh. shed been too ashamed to say she had a disease.

if anyone could give me tips or any insight as to whether this sounds like bechets id appriciate. Im like a walking rattle... you hear me come before you see me!

thanks

liz

[lizzykarma]

I also keep getting my sore throat that i started with back on a monthly basis for about four or five days then it goes again along with flu like head cold symptoms. iv kept a pain diary from June. The poor rhuemy that has taken me on i fl kind of sorry for as he has pages and pages to read now lol.

[lizzykarma]

i cant even swallow atm for the ulcer pain. least my joints are just twinging tonight lol. sometimes its so painful all over in my mouth and with so much fatigue i just want to cry.

sometime i do. i dont even know whats wrong with me or whats going on, its kinda nerve wracking in a way. im trying to see to the kids around it all and went back to work last week. its just been a nightmare and im so tired now. i just have no energy the simplest thing exhausts me.

anyway my rant over.

i will be so greatful to anyone that takes the time to read the above and give me some advice even if its something for the ulcers... iv not eaten all today im so sore! xxxx

[devonshiredumpling]

Aw, Lizzy, what a dreadful time you seem to be having

I've read it a couple of times but at the moment I can't offer any insight because I don't feel so good myself. I would just say that if you spend some time reading back over the posts you'll see that many of us suffer from similar problems. You will also see that rattling is an occupational hazzard for BD patients.

This is a fairly new forum - or rather a new incarnation of one that wasn't so successful - which means that it is perfectly possible for you to read every post made from day one in the space of an evening. I'm certain you'll find reassurance/recognition there.

I've noticed that we tend to go quiet at the weekends but there's always somebody around and there is always somebody willing to help or at least lend a shoulder.

Welcome to the forum - it's the beginning of finding understanding.

Take care

Di

[lizzykarma]

thanks so much Di!

yeah iv had a scroll through and it does seem to be ringing similarities with a few other threads and such.

thanks so much for your reply

[cailin]

Hi, too tired and sore to answer now! but welcome to the club, unfortunately it sounds like behcets, but there are good days as well as bad days and as someone i once knew use to say " the longer you have good days - the shorter you'll have bad ones!" chat soon, stay strong and most of all believe!

[lizzykarma]

hi cailin thanks.

(update my eye prob is retinal vasculitis apparently lol) having a scan done weds on the carotid arteries. hopefully il find out more thurs. keep u updated. drained and fatigued myself so can related xx night

its jus deflating when you kid yourself its going as its easing and then it hits u again. nearing that time of the month so i know il be hit with the gu's any time soon as well sobs and dreading it!!!

[sslaird]

I take depo-provera shots to prevent my period since I always flare then. Prednisone helps the inflammation but really does a wreck on your moods. The only thing that has helped me with the retinitis is Remicade. Right now I am suddenly deaf with high pain in one ear; apparently this is a manifestation of Behcets that is uncommon and is not successfully treated with the meds that I am taking. Waiting on docs to figure out what we can do, if anything. I now know why Helen Keller stated that she would choose hearing over sight; it is very scary to be alone with only your thoughts for companions.

I have a child to take care of too, my last of four. I had to stop working over a year ago because I would have to call in too often. I really miss my job. I hope you can get the symptoms under control and continue working.

The doc who said women cannot get BD needs some training, eh?

[lizzykarma]

exactly.

thanks hun yer iv got three its so hard.

my ears and eyes play up and i have bad psoriosis in my ears. its all just madness i dnt know if im coming or going.

im on prednisone now. and asprin.

i got a printout of my bloods today from my drs.

where they put

bechets? on the form as reason for the teest it now says bechets?=yes

so is that a conf of it?

xxx

[Carriehope]

My daughter-in-law gets mouth ulcers and genital soreness nearly every month. Do you think she has Bechets? She also gets headaches and tiredness.

[Sunset]

Facilitate the life of patients with Behçet's recommendations

- Choose yourself constantly and frequently change doctors a doctor or center.

- Check time in the absolutely aksatmayin. Yourself, even if you feel well, please check the time comes, go to the control.

- Each re-organized control and prescription of treatment, a note will be valid until the next inspection.

- Do not change your treatment on your own. Even if you are very good, without the consent of your doctor, do not cut your medication on your own.

- Control the way, do take your medication or boxes. And how and when you drink medications, tell your doctor if you have a mistake, ensure its correction. In this way, the wrong use of some drugs may occur and learn the truth.

- If possible, try to learn what works each medication you are using.

- Sickness reattached and exacerbations, exacerbations may from time to time seeing a well-know and be prepared.

- Introduction Behçet's disease microbes and microbial products is thought to be in the mouth of one of the ways. This abnormal response of the immune system may occur. For this reason, temizliginize oral and dental care.

- Pharmaceutical box located in the read recipes. However, please keep in mind the following points. These recipes, medication side effects, which are written in order to reduce the company's legal responsibility. In practice, almost never seen or can be seen as a very rare side effects are even recipes. There are certain side effects of each drug, and most preferably consult your doctor for these side effects.

- All kinds of problems that you may have about your illness or are using drugs, ask your doctor, and do not hesitate to ask.