A question about pains in the upper body and Marfan's syndrome

[omer18]

Hello,
I'm 18 and I'm from Israel. Please forgive me for the  length of what I'm about to write, and for my engish mistakes.

In the last 6 months I'm suffering from medical problems. At first, I had problems with my dung. It's soft, sometimes water comes out of my rectum, sometimes there is a lot of blood and I always feel that I have more but it doesn't comeout. Therefore, before 3.5 months I've been checked in a colonoscopy examination, and it was diagnosed that I suffer from ulcerative colitis, both in the examination and in the biopsy. nothig further was found. I've started taking 5-ASA pills (4 Grams a day) and there was some improvement in the whole dung stuff, but the improvement did not continue any further.

in the last 4 months I also suffer from very sever pains in the upper body - in the upper stomach, in the chest, in the side of the chest and in the upper and middle back. sometimes my stomach hearts more, somteimes my chest hearts more and sometimes my back hearts more. sometimes I feel the pain only in one location of the ones I've mentioned (but I also fell that the other locations are not stable and tha pain can start any minute there). Most of the times the pain focuses on one side - the right side or the left side.

about 3 months ago I've underwent a gastroscopy examination and it was discovered that I've Gastritis, severe Duodenitis and a Hiatus Hernia in a length of 3cm. A sample was taken from my craw but the pathologic answer stated only the things that I've knowned, Gastritis and Duodenitis. Anyway, in this period of time I've stated taking omeprazole - 40 miligrams a day.

A few days afterwards I was hspotilized. They have raised my Omeprazole from 40 MG to 80 MG and meanwhile gave me tramadol HCL for the pains. the tramadol helped, but the pain was steel pretty strong. In the hospital I've underwent a CT enterography examination, which turned practically nothing new, besides an image of what may be an edema in the 3rd part of the duedenum. Therefore, they have started giving me Omeprazole iv, 80 MG per ten hours, for the whole day (about 190 MG ad day...) for 4 days. In the first day after they started this treatment I felt better, and the improvement conitnued. In the first day after they stopped this treatment, I felt a little bit worse, but in that day I was released from the hospital and in the following days I've felt better. 3 days after I was released from the hospital I started to feel worse, and the pain was almost like the pain that caused me to arrive to the hospital. Therefore, I've underwent another gastroscopy examination, which turned the following results: The Gastritis was healed, and the Duodenitis turned to mild to moderate. Samples were taken this time from the Duodenum.

In the following weeks I felt an improvement, and for some time the pain was very very little and I almost didn't suffer. However, about a month ago the pain returned, and for some weeks I'm suffering from a very sever pain. Meanwhile, the results of the last biopsy returned, and here they are:

a) One fragment of small bowel mucosa with active chronic enteritis.

b) Multinuclear giant cell (CD68 positive) is present adjacent to the crypt abcess.

c) Inflammatory bowel disease (especially crohn's disease) have to be considered.

However, the doctors wanted to take a look at the biopsy and it made them nore confused. They are really not sure that I suffer from Crhon's disease. Therfore, I've underwent an endoscopy capsule examination, but there
was nothing unusual found in my bowel.

Anyway, because of the pains I've started taking Prednisone today, 40 mg a day for about two weeks. so far I don't feel an improvement, but I've to mention that in the last two days there was an improvement in my situation - unfortunatley, It is very likely to turn out as a temporary improvement.

When I was hospitilized, I was exammined by some internal doctors, and one of the trainees mentioned that I've a marfanoid look. A day or Two afterwards the proffesor rejected this idea, because of the fact that my hands doesn't reach my knees when I stand. Any way, a few days after I was released from the hospital I discovered, by surfing in the internet, that the hand does not have to reach the knees in order for the person to be marfanoid or have the Marfan's syndrome. I have to mention that by the time I got to the hospital I was skinny, maybe very skinny, due to the fact that I've lost 9 Kgs (19.84 Pounds) - from 72 Kgs (158.73 Pounds) to 63 Kgs (138.9 Pounds). I'm tall, 1.90 meters (6.23 Feet), but my parents are also tall, and so are my brohers - they both have almost the same identical hight as me (and no one in my familly suffers from any severe disesase right now, maybe except my mother which is 54 years-old and suffers from Osteoporosis. She also has a pace-maker. My grandfather had died from a cancer in his colon, and my other grandfather died from a cancer in his stomach). So, a few months ago I've had, from what I know, an average body, and today I look very skinny.

In the last few months I've also had a few chest X.rays (including one the was about the heart, I think) which turned out Okay, I had ECG's that turned out also pretty much Okay, I've had and X.ray for my spine in the back and in the neck wich turned out Okay, and I've also had a few blood tests which showed  a low hemoglobin (10.7, after sometime 12.3 and 12.4), low ferritin (5) and more, but I was told that the blood tests didn't show any problem in my liver. I've also underwent urine tests and a dung test and they turned out Okay.

I've to mention that in the last few days my pain is mostly on the right side of the upper stomach and upper back and chest (but there is some pain on the left side). Also, my urine is a bit turbid, even if I drink a lot. I also have many many hiccoughs.

My question is: Due to the symptoms and the results of the exeminations I've underwent, should I worry about having a Marfan's syndrome? Or maybe you've concluded some other possible problem that I've from what I've written? I just want to check if my problems might come not from the gastroenterology area.

Thanks in advance for your answer,
Omer.

[omer18]

Hi fellows,

I'm glad for your answers, but as you can see my message was written in October 2007 and now it's 2010... So there have been some little developments. During that time of suffering, when the doctors didn't know what can cause that, I found out about a disease named "fibromyalgia". The symptoms immediatley seemed to match perhaps all of my symptoms, at least the unexplained ones (I've IBD also). I let it go for a while, because I said to myself "let the doctors diagnose you, you are feeding yourself with fears", but at some point I decided to go to a Rehumatologist about it - and he eventually diagnosed me with Fibromyalgia. Then I went to another Rehumatologist, who specializes in fibromyalgia, and he diganosed me with it as well. Fibromyalgia is diagnosed without any "objective tests", like blood tests or X-Rays - only based on symptoms and what's called "tender points" in your body - so I always have th doubt, but it does seem like Fibromyalgia. I've asked these two Rehumatologists if I may have Marfan, and they both said they don't think so (although I acknowledge the possibility for ignorance. I know it very well, because in the past I've asked my familiy doctor if I may have Fibromyalgia and he said "no, this is a disease of older people than you", which is really incorrect. Anyway, later on a neurologist looked at me and suspected Marfan syndrome. I was sent to do an Eco of my heart - which came back with no problems, although there was one area - and I think it was some area of the Aorta, which couldn't, technically, be seen in the test.
Anyway, I improved much from then, but I'm still not healthy and my life quality is not so good. Fibromyalgia don't have many treatments - and the ones it does have are for pain - and right now I don't feel a lot of pain - which is fantastic, but I've other problems - mainly fatigue and malaise.

In any case, I now know about Marfan syndrome and if I have to face again the possibility of another disease that I have instead of Fibromyalgia, it's on my mind.

Thanks you fellows!

[nickppatel]

Virtually none of the tests you have done pertain to Marfan Syndrome (MFS).  You should visit a doctor knowledgeable about MFS for a work-up with the correct tests.  If MFS is suspected, you should regularly evaluate your aortic size through regular imaging (echocardiogram/CT/MRI), regardless of what the doctor says about it being unnecessary.  A lot of doctors are ignorant, just as you pointed out.

Also, do a Google search for "losartan and Marfan" to read about some very important developments.  You can click on my screenname to learn more by viewing my prior posts.

Best,
N

[chappy1234]

I do have Marfan's and have had many of the same symptoms.  Almost identical actually.  My grandmother died of stomach cancer a few years back my brother died when i was young but he was 6 foot 5 inches i am 6 foot 2 inches.  my weight goes up and down often and seemingly without reason I dont speak to my father but he is also tall.  My mother also has heart issues.  I have had a number of other issues aside from yours though.  I have spine problems,  my lungs collapsed 15 times, my teeth crushed each other, my eyes have issues, and i found that i had 10 stomach ulcers when i was 19 i have had severe stomach problems when most of which feel better with omeprazole but i still have chest pain in my chest in my back and down into my stomach i wish i had more info for you but unfortunately i dont have the money to have it treated at this point, although  when i had each one of these individual problems the doctors told me i was fine and they had solved the problem it wasnt until i was in the hospital for stomach pain that a nurse told me the same i had the marfans build.  each doctor when i told them of the pain told me i was addicted to narcautics and did not continue to look for a cause i would continue to check into marfans and if it is not that dont stop looking doctors are aregant and most dont like to believe they could be wrong keep looking dont give up good luck

[omer18]

I forgot to mention that about a year ago I've a proccess to examine whether or not I've hypertension, and after a few months of examination and many examinations the proffesor reached a conclusion that I suffer form a White-Coat hypertension.