Parry Romberg Syndrome

[noko]

Hello!!!My name is Ioana Cuciureanu I am from Romania. I am a student in 3-rd year in Iasi. 3 years ago I was diagnosed with the Parry Romberg Syndrome. I know my e-mail will be very long but I have to explain everything since the debut of the disease cause my doctors here won't believe me and i don't know what else to do........Now I am a member of the support group "The Parry Romberg Syndrome",and they really helped me with moral support and now here's my story:
I will never forget the day it all started I remember clearly now.........I was in sixth grade I had a contest at school called "The code of good manners" and before it I had a contest between schools at math......I did horrible that day at the test I could not solve most of it I got 3 on a scale from 1 to 10 I was very ashamed I could not tell my parents.
At the contest at school I was so shore I was gonna win but I only got the second place it's not that bad but I worked a lot to take the first.....that morning when I woke up I had under my right eye like a rash it had about 1 cm but I thought it was because I cried the night before so I did not see it at a problem that time......the day's went by and it got bigger it went along the nose and under the eye and stayed that way for almost a year i knew something was wrong cause that area was very sensitive at heat cold or pain, but who would listen me????I was just a kid, I remember when I went at the first dermatologist with my father and the doctor said "Mr. u know how kids are......playing all together ..... in garbage ...... they don't wash that often.... and so on" ...... I was really offended I tried to tell them that when I had it I did not went out from the house with days weeks, but my father rather believed the doctor.......after all I was just a kid............
By the eight grade it went down near the mouth and under the chin ........... the skin in that area was like a few mm's higher than the rest of the face it was verry shiny like i was burned with hot water.......but still no one see it as a problem.........and then the skin started to get hard.....and from that rash started to look like a bruise and got harder and painful but still that was not a problem for them .......I saw a dermatologist in another town he said it was scleroderma but he never gave me papers so i can prove it ............ he said it was no biggie I will be just fine if it wont stop from the treatment than he will do a surgery at 18...........
I was so happy then, but It started to look worse he did not gave me any information about that disease so I went to see another dermatologist in my hometown but with no papers to prove my diagnose they acted like nothing was there.....around tenth grade,I don't remember exactly if it was before or after I started to do like a cruciate I saw a doctor from a university and she agreed to see me. She stood my doctor till recently but she never informed me about my condition........all the time they just did pictures they took me to their classes so the students at medicine can see me.....from their point of view it was amazing, beautiful, I can express my feelings in that moment I thought they were mocking me ........... so I fought and went with a foundation to see other doctors.........that was the motive for huge scandals at home my parents thought I was overreacting but in my heart I always knew it was more than that .......... I went all over the country.Doctors, they all confirmed the diagnose but when I wanted information about the disease scleroderma no one answered ...........
In 2006 I went to Bucharest the capital to see more doctors. One did me a test too see if it was not systemic and the test was good ............... it wasn't she sent me to another doctor and he asked me to do a test elisa....borelia..... I don't know exactly the name but behind one of the recepys he gave he wrote "THE PARRY ROMBERG SYNDROME"........I never saw that till recently cause I took all my medical papers from home and made like a personal file so I can show it wherever I go.... I always wondered why my dermatologist from the university changed the diagnose so sudden and now I know why......
I was often hospitalized but she only saw me once or twice a day a few minutes, she gave the instructions to her residents and after that up she went.......I tried to ask her ............. to give me information's but nothing .................. it all resumed at pictures , students,vitamins plus cremes with corticosteroids but from my medical papers and what i was hearing from when they took me at the students I was not satisfied I believed it was more......then I went to college.......I started to look more on the internet ....... but most of the time I could not find more than a few words on the disease........a year ago I found out that there was no cure for it I thought my world was crashing ...........Why didn't someone told me that?....... but I did not gave up .......... My dermatologist sent me to a neurologist she said she was the best ...... from their conversation (between doctors, cause shame on me but I was spying on them), I heard that it is no longer their problem and that it's the neurology's problem...............So then came the big question.............why?????
I went along with them at some point I had to find out some answers right? In this time I joined the group I told you above.............and started to get more terrified, when I read all those articles and about all the problems they had and got along the years......I thought the neurologist would help me but I only saw her last year in September when she recommended a CT and after that every time I try to contact her , THAT BIG ARMY OF NURSES AND DOCTORS that work for her wont put her trough.....and so I went 'till march this year and finally I gave up.........I went to see my dermatologist again I tried to explain her ................. I told her that I believe that they wont some extra money from me cause the first time I went they did not called the doctor until I payed them.........but I had to sent her my messages trough her doctors that were residents.......I guess she did not like my sincerity cause her message was that I should call at her hospital too cause today she doesn't consults people.............
I was desapointed I did not expect her to believe me or to treat me nice.....but I was hoping for her advice,for help ................... so I left......and I tried to take the matters in my hands.........I started to look more on The Parry Romberg Syndrome on the internet and I thought that if I had all the right papers than someone will have to listen to me.................but along with this cruciate I'm doing I have to go to college and work part time and "watch" if I may say so for my young sister that is in college in the same town with me .......... so these last two week were too much for me...............my headaches that i had since high school got worse........I started to forget things.......I lost control of me.........in my class I fought with every colleague they all hate me they thing i'm going crazy......
I asked the help of a psychologist at school but they asked me: "what for.....in your condition????".......Now that's funny.......they sent me to a neuropsychiatrist .......I felt so good when I went to consult me but for my surprise there were 3 doctors not one ........ I tried to explain them my other problems with my memory, the headaches, that the flesh from my face hurts like is ripped or burned.........and the only thing that they kept asking was about those papers from the internet..... like I was trying to diagnose myself.......I could not take their mock too so I lost it.... I yelled at them I told them that I am sick of fighting for my believes cause doctors think that the pain is in my mind.... just my imagination.....at college teachers don't ask me why my grades are bad day by day.... if I tell them i am sick they tell me that not everybody has to finish college so that makes me wanna fight more even if i'm loosing my "intelligence" so to speak........I explained them that i am conscience of my disease and that there is nothing I can do at least at the moment cause I don't have the resources, the time and the money and power to fight this bureaucracy that is everywhere but all I need is to live normal to get ride of the pain and finish college cause the only thing that will help me trough the future is my diploma and not my looks ....... finally those three doctors thought that I should see another one....another neurologist.....
I haven't got the chance to do that yet cause I haven't managed this days to get away from school but I wont give up......meanwhile I found a doctrice, an internist she is very young but she really believed me,listened me, she admitted she never heard of this disease but she took al my medical papers and my research from the internet and red it.....she gave me treatment to help for my memory and stuff but she said that this is all new to her....and neurological speaking she can't help me much.......My parent's don't believe me when I tell them that I can't keep up with school they say I am laisy,and joke, they remember from high school that most of the lessons I "learned" I did it from class .....i had no problems I was smart ......... and now I have times when I need like a day to do simple stuff like a sum or an equation........I have headaches since high school from like tenth grade even earlier but the CT I did then and the one from last year September shows no abnormalities and they all think that is nothing wrong with me............I feel like someone has a very long needle and just shuve it in my head I feel week , tired, when I walk like five stairs my brain is about explode like my heart beats in my head, and when I manage to get to the first floor I feel like I've runed for miles I have problems breathing and my mouth is dry my lips and from that one floor I sweat especially on my forehead and under my eyes..........but still if the test are not bad the dr's think there's nothing wrong........I don't know if this is much to you but all I know it that is not my imagination, the dermatologist says that from now on it belongs to the neurology and the neurologist says that is not e neurological problem..........what can I do?..........I'm so tired fighting.......
In high school when I had those headaches after the CT and THEIR conclusion that I was doing it for attention I could not take it anymore the pain was too much for me I tried tree times to end my life then............ I guess I didn't do a very good job then but I regret that i tried taking my life, I know that running from the problem will not disapear but I don't wanna go back there ......... I'm afraid telling that i've tried taking my life then cause they'll put me somewhere and say that i'm crazy..........
All the tests I have done since my disease are good except VSH that is high but my CT is ok and so there is no pain so they say...........Am I crazy? It's really frustrating I'm in pain and there is nothing I can do about it.I took all the I could find on the internet about Parry Romberg Syndrome but they think I'm trying to tell them how to do their jobs...I don't know what they think............But they won't accept those information I thought that if I could show them a doctors point of view that has seen cases (more than 1) then maybe they will consider those other problems...sorry for spelling
i had lyrica for the pain but no efect even 2 pills at once i started on topomax but now my left hand and leg get numb sometimes and have the same pain like in the head ...why??? what's wrong with me ???

[Sue Pendleton]

Hi Noko,

That is some story. Is there any possibilty of having reconstructive surgery on your face in Romania? If there is I would go with that as most facial reconstructive surgeons insist on neurological MRIs or CTs to make sure the problem is solely due to the one cause - in your case Romberg Syndrome.

[noko]

i had a ct last year in septembr but it is not conclusive for my disease cause a surgeon said that it had to be a 3d reconstruction something like that and that is what I'm trying to explain at the dr's here from neurology they think i'm am over reacting they say i should have patience ....... but I'm worse by the day ... i haven't done a MRI nothing i'm takink pills but i haven't made any tests ... i have these pains for almost 5-6 years and it's worse day by day and new stuff .. simptomps .... and to quickly compared with the last years how the deseased evolved if i may say so apear........ a few days ago my left side was numb now both hand and legs get numb even when i'm moving .... and they hurt ......... my hand's feel week like i have no power in them .... and they look like i have bruises sometimes ........ i wrote here in my country on pages for dr's to answer but they all said that my prbl it's only estethically and that these other symptoms are trygemynal neuvralgya something like that ..... i read about it .......... maibe i have that to ......... but that does not explain all my problems ..... anyway thank you for your answer

[noko]

for most of them it's hard to believe most of the problems i have .... i even went to a psychologist and a psychiatrist (cause i thought that maybe i was doing this myself in my subconscious ..... i don't know......I'm taking all the possibilities...... i was starting to believe the dr's.....they were akting like i was doing that) and now i know i'm not crazy .... i found a dr in America john siebert aparently he opereted 140 cases like mine .......... i tried for a long time to get in touch with him and last night he answered to my email..... he said he would help he would operate me and ........ and i really wish that ......now i need a miracle to fly there........ u may say i'm crazy but i don't trust a single dr here in my country ..... i went all over the country ........ they sent from one to another and when they did not like the truth they disposed me .... i wrote manny letters to my ministere of health for help they never answer i wrote to the european comision of health cause my country is a memeber of the european union but they said that there is nothing they can do .......... so i rather look for doctors that have seen cases like mine and are willing to help me ..........

[Sue Pendleton]

Noko, Has Dr Siebert mentioned any groups that may help with costs to fly you over and deal with hospital costs? Flying in a regular jet is not so bad but our hospital and surgeon fees are, well, very high. You said you were a 3rd year student so 21? Some hospitals here have programs for children but they normally end at 18. Which hospital is this doctor with and are there any EU hospitals he would consider to be good also and have done the surgery you need?

[noko]

i haven't dared to ask yet the cost off all he just answered my email and that it's much for me and the fact that he belives me... i had a foundation that helped me when i was very young but i lost it because of my parents ......... now I'm trying to contact them to see if they are willing to help me ....... i'll ask him and see exactly the costs he said he will help as much as he can so i'll do my best but I can not go there in my worse state of health so this is why i'm so worried ......... i have one chance and i don't wanna lose it

[Sue Pendleton]

Ask the name of the surgery and also ask if he knows of a surgeon he thinks highly of in the EU. Many of the rarer conditions tend to have surgeons and rehab specialists that know each other around the world. But do ask the approximate costs and at which hospital he works.

[noko]

i wrote and now I'm waiting for an answer .... but I'm still hopping to get to him ...thank you for your advices

[jody]

thank you for sharing your story. I hope that you are able to find some answers soon. Do'nt give up on this very important task of finding a correct diagnosis. It surprises me that a teaching hospital was so interested in your condition, yet you have no information of value. that just seems unfair. They must have files of their own that you should have access to.
I hope that suicide is no longer an option to you. It must be very frustrating and drepressing to have such pain, and visible symptoms as well as the learning struggles, But you should not lose heart again. many many people have had to do just as you, and in a way, be their own docter. keep looking, and try to keep calm. you should not be afraid to treat depression. any one in your situation might be depressed. you must care for that just as you would care for any illness. it does not mean it is all in your head. or even that all the doctors think it is all in your head. just that this condition, what ever it is has caused you to be depressed and very stressed out. that affects the body. My sister has lupus. which has symptoms not unlike yours. It took years for her to get answers, and the condition alone can affect the brain, as well as emotional stresses can affect the disease. we got answers eventually, however the emotional and spiritual counseling is still ongoing, and a very important part of treating her condition.

[noko]

hi jody, thank you for your message!yes it is frustrating and depressing but i am seeing a psychiatrist and a psychologist now so I'm hopping that these emotional problems i have i'll keep them under control, i hope.
now all i have to do is to step all over my huge ego and try to talk to this new neurologist i'm seing and apologize to him cause the last time i saw him ... we argued, actually i did cause he said i was over reacting and i'll try to talk to him again
u see, u said that manny people are tryieng to be their dr's, well i'm not! yea i know that i look on the internet but that's all i dont take pills ar do tests on my own i look for advices or dr's that have seen cases like mine and can give me an opinion that i can show my doctors, this is where my doctors don't understand. they say that i'm trieng to treat myself but i'm not i'm looking for informations that i have'nt heard from them something new,something that would explain my problems, medicall studies or articles or doctors point of view and after i print it and show them so they can jump to conclusions not me