I am currently hospitalized. Was admitted Saturday for inflammation in the stomach. I am wondering if anyone experienced anything like this from Primary EM? The Doctors here won’t even consider EM as a possibility. And i must add although i am working it is a struggle, it is a desk job too but i had worked extra hard to complete a project on time i could feel the EM getting worse and worse. I wonder, did i work too hard and caused this? Also while being submitted to all their tests they say they found a lesion on my lung (i already have lesions in the brain). Could the EM be causing the lesions or is that something else entirely??
Thank you Veerla! I appreciate the information. It does give me more to consider. I am currently awaiting my DNA test result. Hopefully that comes soon.
I have intermittent severe abdominal pain as a matter of fact just had it for a few days this last weekend. It was so severe I couldn't stand up straight and could barely walk. This isn't uncommon for me during the last few years but my pain almost always last for about a half hour then just disappeared. This time however it lasted a few days and I also had unbelievable lower back pain. The lower back pain is no stranger to me either and it is intermittent as well. I have been seen numerous times for both problems and the doctors couldn't find the cause. It is possibly a result of a possible connective tissue disorder but I have no real answers.
As far as the lesions. I have one on my brain and one in my lung. They considered them incidental findings while looking for other problems. They found I have a pituitary tumor in my brain but they think it isn't causing me problems but I get an MRI once a year to make sure it isn't growing further so at the same time I am sure they would see if there were further lesions. I also have had a couple of follow up tests on the lesion on my lung to make sure it isn't growing and I don't have more. So far all testing has been good. They say sometimes it just happens from a bad infection in the past. Just because mine seems to not be any real problem doesn't mean they should be taken lightly and further investigation is a certainly advised in my opinion.
I can't say if the stomach issues could be EM related. I know there is no known link but nothing would surprise me. There is so little known about it. I know for most people it only effects one or sometimes two body parts but mine happens all over my body even my tongue , eyes, and vagina so I think it is possible to effect any blood vessel in the body in a few rare patients. It could be related to another condition as well maybe even the condition that is causing your EM. I'm sorry to say the answer to what is causing your EM is often difficult to find but not impossible by any means.
May I ask if the pain is gone now and if so how long it lasted? I hope it is gone. When dealing with EM you certainly don't need any extra pain in the mix!
Im the same as Alina, we have systemic EM. I have lesions lung and liver .My intermittent abdominal pain is like appendicitis or colic . You cant stand or walk with it. It doubles you over. I know other sporadic primary EM'ers who suffer this too. Medications ,infection or secondary condition could be implicated of course. EM related, in my book, definitely viable. Where do you flare? Any mucous membranes - eyes, genitals, mouth, throat etc...? Could this be related to your pelvic, lower back pain or endometriosis? Could be an inflammation be from your interstitial cystitis. The other sporadic primary EM'ers get this too.
Hospital- you are in the right place thank goodness. At least they should give you a shot to ease that pain.
Kay ,if you have been diagnosed by Rheumatologist as primary then they must treat you. Failing that , we will send you list of EM aware Dr's in NY. Dr Jorizzo's a good one - thats straight off my head. ;).
Alina, you and I seem to have very similar symptoms all around. I have stomach issues as you and they last sometimes months. It has never been this bad. I have bouts every so often and can only eat soft bland foods and liquid (I do drink several different types to get all my neutrients and take vitamins to try to stay as healthy as I can). They diagnosed me with severe colitis (I guess it's similar to Crohns disease). It is a relief to hear the lesion on the chest is not progressing. I'm sure they will perform similar annual tests for me as well they were concerned about it I have to say. As far as the lesions in my head, I had a 6 month follow up scan that not only showed mild progression but showed early signs of early chronic small blood vessel disease. I am convinced it is the EM and all the pressure in my head and face daily. I try to stay in constant cool temperatures and have to remain calm in order to prevent a flare up and then there 10xs more pressure. I feel (and hope) if I avoid those flares to my head as much as I am capable of it will reduce or eliminate the progression of the lesions in my head. Thank you for sharing your experiences. I do feel better about the lesion in my chest. You have been most helpful. :) Kay
mads said:
Hi Kay,
Im the same as Alina, we have systemic EM. I have lesions lung and liver .My intermittent abdominal pain is like appendicitis or colic . You cant stand or walk with it. It doubles you over. I know other sporadic primary EM'ers who suffer this too. Medications ,infection or secondary condition could be implicated of course. EM related, in my book, definitely viable. Where do you flare? Any mucous membranes - eyes, genitals, mouth, throat etc...? Could this be related to your pelvic, lower back pain or endometriosis? Could be an inflammation be from your interstitial cystitis. The other sporadic primary EM'ers get this too.
Hospital- you are in the right place thank goodness. At least they should give you a shot to ease that pain.
Kay ,if you have been diagnosed by Rheumatologist as primary then they must treat you. Failing that , we will send you list of EM aware Dr's in NY. Dr Jorizzo's a good one - thats straight off my head. ;).
I never thought to think of it as "systemic EM" but it does make sense. I was informed that I have a cyst on my liver during all the testing but said they were not concerned. I am glad it wasn't a lesion. I am sorry to hear you have one though. What do they do about it? Just monitor it? Has there been any progression? My stomach will do the same but this time it was worse and after a few visits to the rest room there was nothing but blood coming out the back end. I do know I have to watch what I eat now and had been having mild issues with eating for the past several weeks (had lost 20 lbs. also). I will do everything I can not to go through that again.
I am thinking that the stress and extra hours from my work load and pushing myself too far is the culprit for this sever inducement of the colitis. I am glad to hear I am not the only person who believes the EM it could be a viable possibility.
I flare in my face, mucous membranes, eyes, genitals, mouth, throat; yes all of it. I did have a full hysterectomy 7 years ago. I remember the Doctor telling me he did see a little endometriosis on other organs but wasn't concerned they could cause an issue. However, with the EM it could a possibility. The lower back and pelvic pain is chronic and walking or standing for lengths of time makes it worse to the point I can't do it anymore. I did get the interstitial cystitis misdiagnosed. I was glad for that. I now believe my bladder issues are a symptom of the EM as well.
I wish the Rheumatologist who diagnosed the primary EM would try to treat me but I didn't have any such luck. She told me there was nothing she could do and to "live with it". That was 2 years ago and at that time the only symptoms I had were the bladder, hands, wrist, up the lower arm, elbows, feet, lower legs, up to the knees and the lower back. I was very saddened when she sent me away because the daily pain is so unbearable. I almost had a breakdown after I read about the sever colitis. I do not need another painful disease. I have been a very strong, independent individual all my life. I'm having a hard time with this to be honest. I don't wish to share these feelings with my family. Do not want to worry them. I hope it was okay to express them here.
I would greatly appreciate a list of Dr's who are aware of the EM in NY. And thank you for the name (off the top of your head). I have been unsuccessful in finding one and have been considering going to the Mayo Clinic. Their locations are so far away it will be an issue getting there.
I am so very appreciative of your well wishes and response. Thank you kindly.
Kay
Alina,
You and I seem to have very similar symptoms all around. I have stomach issues as you and they last sometimes months. It has never been this bad. I have bouts every so often and can only eat soft bland foods and liquid (I do drink several different types to get all my neutrients and take vitamins to try to stay as healthy as I can). They diagnosed me with severe colitis (I guess it's similar to Crohns disease). It is a relief to hear the lesion on the chest is not progressing. I'm sure they will perform similar annual tests for me as well they were concerned about it I have to say. As far as the lesions in my head, I had a 6 month follow up scan that not only showed mild progression but showed early signs of early chronic small blood vessel disease. I am convinced it is the EM and all the pressure in my head and face daily. I try to stay in constant cool temperatures and have to remain calm in order to prevent a flare up and then there 10xs more pressure. I feel (and hope) if I avoid those flares to my head as much as I am capable of it will reduce or eliminate the progression of the lesions in my head. Thank you for sharing your experiences. I do feel better about the lesion in my chest. You have been most helpful. :)
Kay
mads said:
Hi Kay,
Im the same as Alina, we have systemic EM. I have lesions lung and liver .My intermittent abdominal pain is like appendicitis or colic . You cant stand or walk with it. It doubles you over. I know other sporadic primary EM'ers who suffer this too. Medications ,infection or secondary condition could be implicated of course. EM related, in my book, definitely viable. Where do you flare? Any mucous membranes - eyes, genitals, mouth, throat etc...? Could this be related to your pelvic, lower back pain or endometriosis? Could be an inflammation be from your interstitial cystitis. The other sporadic primary EM'ers get this too.
Hospital- you are in the right place thank goodness. At least they should give you a shot to ease that pain.
Kay ,if you have been diagnosed by Rheumatologist as primary then they must treat you. Failing that , we will send you list of EM aware Dr's in NY. Dr Jorizzo's a good one - thats straight off my head. ;).
Seems all of us have the same symptoms - systemic.
Ive lost- over 20lbs in 9 months. I am too frightened to eat because of the abdominal pain and live off protein shakes. Severe colitis was my diagnosis (like Crohns). Its impossible we all have the same symptoms and its not EM. Not everyone has 'classic' EM. I have to stay 'frozen' and I mean frozen. Have you got Raynauds now too? Systemic seems to spread that way.All mucous membranes- even organs can become affected.
Lesions and YOU must be monitored. Regular bloods, ECG etc..... Get taking supplements - a good multivitamin with all the B's. Vitc/zinc, omega 3, silica (hairloss). Also, boost energy/fatigue with vegetable protein from shakes- easier to digest.
Please add as friend so I can upload NY Dr list for you.
We are all thinking of you.
Dont forget- if you need or would like to talk - we happy to call you.
I am sorry you have a vascular disease and it is progressing. Do you know the name of your specific condition?
As far as EM goes for some they just Have EM and it exists on it's own for others EM seems to be more of a symptom of another condition than just having EM. I wonder if your vascular disorder is the cause of your EM. Is there anything they can do to treat your vascular disorder?
I am glad I could be of help. I hope you are staying cool :)
Take care,
Alina
Kay said:
Alina, you and I seem to have very similar symptoms all around. I have stomach issues as you and they last sometimes months. It has never been this bad. I have bouts every so often and can only eat soft bland foods and liquid (I do drink several different types to get all my neutrients and take vitamins to try to stay as healthy as I can). They diagnosed me with severe colitis (I guess it's similar to Crohns disease). It is a relief to hear the lesion on the chest is not progressing. I'm sure they will perform similar annual tests for me as well they were concerned about it I have to say. As far as the lesions in my head, I had a 6 month follow up scan that not only showed mild progression but showed early signs of early chronic small blood vessel disease. I am convinced it is the EM and all the pressure in my head and face daily. I try to stay in constant cool temperatures and have to remain calm in order to prevent a flare up and then there 10xs more pressure. I feel (and hope) if I avoid those flares to my head as much as I am capable of it will reduce or eliminate the progression of the lesions in my head. Thank you for sharing your experiences. I do feel better about the lesion in my chest. You have been most helpful. :) Kay
mads said:
Hi Kay,
Im the same as Alina, we have systemic EM. I have lesions lung and liver .My intermittent abdominal pain is like appendicitis or colic . You cant stand or walk with it. It doubles you over. I know other sporadic primary EM'ers who suffer this too. Medications ,infection or secondary condition could be implicated of course. EM related, in my book, definitely viable. Where do you flare? Any mucous membranes - eyes, genitals, mouth, throat etc...? Could this be related to your pelvic, lower back pain or endometriosis? Could be an inflammation be from your interstitial cystitis. The other sporadic primary EM'ers get this too.
Hospital- you are in the right place thank goodness. At least they should give you a shot to ease that pain.
Kay ,if you have been diagnosed by Rheumatologist as primary then they must treat you. Failing that , we will send you list of EM aware Dr's in NY. Dr Jorizzo's a good one - thats straight off my head. ;).
Primary- did they say genetic? How were you tested? Your symptoms sound more primary sporadic. In my experience its sporadic who seem to be more likely to have progressive and systemic.
Agree with Alina vascular condition? What is the condition? Maybe you have secondary EM Kay.Secondary would also explain all the other co-existing problems and pains. Im so sorry you have to suffer this my friend.
Sending you the NY list now. If you want to know about Dr Jorizzo message Jordy516. Jordy516 is seeing him as are several other NY members.
Wisest move is to access an EM aware Dr who is going to try to help you better manage your symptoms and pain. Take photos, keep pain diary ........ all the information you can present, the better ;). You are taking a positive step forward...... stay strong!
I am currently awaiting my genetic testing. I was accepted into the Xenon Research Study. I am hoping they will have results in a month or so. They apparently had an issue with the first round of tests and have to try again.
The blood vessel condition they mention in the result of my head MRI is chronic microangiopathic disease. I was assuming because it was a blood vessel condition as is EM they were related.
I am very much looking forward to contact with a Dr. that is aware of EM. My primary doctor doesn't have a clue about any of it. Thank you so much for the list of Dr.s I will be making use of it.