Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Is there any one that has this Disease? I Just found out i have it on june 17th and its very rare! I feel so alone. I hope i can find someone who has the same Disease so i understand what im going through. thanks
Exercise Down syndrome Cancer Appendicitis Back pain Colchicine Pneumonia TRAPS Whooping cough Lupus Rheumatoid arthritis Cortisol Stress Asthma PFAPA Arthritis Familial Mediterranean fever (FMF) Fever Pain Edema Ear infections Amyloidosis
hi there, i have been dianosed with this disease and its so frustrating because on top of that there r other complications with it.
have u been put on a steriod 4 life called hydrocortisol.my 1st dosage was 20mg morn and 10 mg at nite, also do u see an endocrinoligist,if not u really need 2 see a good 1 who will explain everything 2 u.
there are alot of smytoms with is and i only show low cortisol.
the 1st is loss of weight to abot 6 n half stone im opposite iv put on 2 lol.
next is pigment of skin,gums strech marks.
sickness, diarrohea,sore mustle.
any i cud go on 4 a while.
if u google addisons disease there are alot of site 2 see but sum can b a bit scarry plz dont take it in.
my advice get 2 a good gp tell him u want test dont also ur puturity glad has alot 2 answer 4.
plz keep in touch.
im waitin on brain scan,ulrasound on abdomain and a 1 n half hour blood test,the quicker i get them the more eased i will be.
take care xxxxxxxxxxx
I know what you mean my son has HIDS-and his symptoms are almost the same, his fevers seems to be gone now that he is 14 but he still has all the other symptoms and it is stressfull for the families.
My son has a form of this called HIDS (Hyper IGD and periodic fever syndrome, there are some web sites on the internet that can help you with some information.
I have MFF, I have had it since I was 17, I'm in my late forties. It took over 25 years for a diagnosis. I still have "flare ups"...I have searched for others with this...gentic disease. I hope to hear from you.
Shelley
I have had fmf symptoms since the age of 3, but was diagnosed and started treatment at 20. I took colchicine for about a year, but recently discovered a homeopathic version of the drug, that is an alternative medicine treatment. The homeopathic medication is not taken every day rather a week and stopped untill further symptoms seem to reoccur. After switching to the alternative version I was symptom free for about 6 months, but lately I have been getting some mild symptoms back and it could be also due to the increased level of stress in my life. My question now is, since i know that colchicine is supposed to not only teat symptoms, but prevent further complications I am puzzled weather i should go back to the traditional version to be safer for future or stick with the alternative version as long as it seems to work. I am just afraid of having future complications for not taking medicated colchicine.
If anyone has more experience or any suggestions for me please do so. I would truly appreciate any help, or advice.
Thanks in advance!
Hey! I saw ur message about others having the disease. I have had the symptoms since I was 3 years old, but was officially diagnosed and started colchicine treatment about 2 years ago. And now I am 22! So it took almost 2 decades to fully understand all my health problems and I had to go thru many hospital visits and other not knowing what's wrong with me. I was sort of relieved when I found out what I have has a name, yet once I started researching about the disorder I realized how serious it can potentially be and now I do occasionally get quite upset and frustrated having to deal with it. It is hard for others that don't know what it means for u to have the disease to truly understand your frustration and pain, and I would be more then happy to communicate with you and maybe we can inspire each other and learn how to be happy and not let this interfere with our lives.
I hope you would like to keep a communication, but if you decide you rather not I truly wish you lots of patience and strength and know at least you ARE NOT ALONE!
~Angel
I will help as much as I can, though I am constantly learning new things with the condition myself.
I am 25 years old and had my first attack at 4 days old. I have seen more doctors in my life than I needed to, and have experienced more pain than perhaps I deserved.
There are a few recommendations I would like to make for parents who are coping with this condition for their children and are only seeking help from doctors.
First of all, you're doctor knows nothing. They will recommend colchicine, a few NSAID's, and that's about all they can do...make the best of it..right?
What I've learned in my experience is that despite what 'modern medicine' can tell you there is alot of herbal and natural treatments that help this condition. First off, I'm not a doctor. This is what I've learned from my extensive experience with herbal doctors and FMF patients with similar experiences, here goes the to do list;
Pineapple Papaya Enzymes are very important, especially for those with abdominal swelling or any issues with the stomach. They are very affordable, taste amazing, and they break down proteins in the stomach. I used to get stomach inflammation about 1 time a month and since I began cycling the enzymes I have been stomach inflammation free for about 1 1\2 years.
High Potency Vitamins, these are very important as both colchicine and the condition marginalize the vitamins that we eat from food. Not enough vitamins get to the bodies of those who suffer from FMF which in turn results in more inflammation. Start taking about 1 a day.
Black Cherry Juice, this is something given very commonly to patients with GOUT, there will be some that argue this does nothing to FMF patients. Maybe it's just coincedence but I've noticed that taking a small amount per day will reduce uric acid levels and in turn marginalize the condition.
Try to avoid a high protein diet, meat is ok but I used to eat alot of meat per day. Beef in particular raises the uric acid levels in the body which triggers this condition to be more consistant. Try to mix the diet with relatively high fiber, fruits and veggies. Meat, carbs, etc are fine but manage your lifestyle, you don't have to give up on the fun foods you just can't over do it and indulge in fast food 3 times a week.
Finally, get rest!! This condition will strike when there is not enough sleep or rest in you're life. It's not a coincedence it tends to reduce in acute attacks as you get older, because adults not only have stronger immune systems but tend to avoid being overly active unlike children and young teens. Particularly, it would strike your ankles or legs when you have excersised too much or been on you're legs all day.
Feel free to message me as I know how difficult this condition is.
I will lastly say this without trying to be too dramatic, despite this condition being very difficult and scary it is very manageable condition. I am 25 and work full time and go to school, there are days where its difficult, when co workers tell me ' You are always limping a little or something, are you dying?'
However, despite all these setbacks I making a decent living in a small business and I am also going to medical school. Understand that you're child will not have a limited life. With all due respect this is not down syndrome, this is a more complicated version of GOUT.
Hope this helps
My 3 sons and I have a rare genetic disease and I have not met anyone else with our disease. One of my sons is a nurse and he once cared for a woman with our same disease. She was shocked when my son knew what the disease was and was familiar with the IV medication for the disease.
My children were the first children diagnosed with the disease at the major children's hospital they were patients at 21 years ago. It's estimated that 1:50,000 people have our disease.
I have to keep up to date on research about our disease and not count on doctors. If you have a rare disease they may not be eperts on your disease. How can they be experts on every rare disease?
hi
my name is don and i have fmf .
i am israeli and after i suffered alot the doctor find when i was 3 years old that i have fmf.
i take colchichin 2 a day and i live my life regular and i use to be soccer player .
onec in a while i get some fever or pain on my leg i take tylynol and usely day after i am good .
please let me know if you have good doctor for fmf?
Marymac- Has your child been tested for PFAPA? My son has had recurrent fevers every 2 weeks like clockwork that usually last a day and a half and then go away as if nothing happened. He is very lethargic when he gets his fever and will not eat and usually has a red throat. I am going Thursday to find out if his fevers are PFAPA or a rarer HIDS. It's worth a look into.
hello Kristin,
my name is Aiya and I also have the same disease as you for the past fourteen years of my life, ever since birth. Depending on your case the FMF or as you call it the Mediterranean Fever Disease is something scary. Because I have had it all my life, I am now used to it. Yes, it does effect you in many ways one huge thing I suggest for you is to not drink a lot of soda because the acid may trigger abdominal pain. That is mainly what the FMF is about, side effects of the FMF are artheritis, joint pains, and abdominal pain. I hope I have helped you with your issue, if you have any questions feel free to ask me.
Hi All, I have had FMF my entire life and was not diagnosed until I was 40. My son also has it and I am just waiting to see if my daughter has it. Like Raz, I have found that keeping your stress levels down, eating well and getting good sleep helps prevent the attacks or lessens the severity of the attacks. Recently (about 4 months ago), I stopped ingesting anything with asphertame (artificial sweetner) like diet soda and sugarless gum. Since then, I only had 1 attack and it was mild. I wonder of there is a connection?????
Colchecine did not work for me so I am trying all kinds of alternative medicines. Stress is a big component as to why the attacks come and the intensity of the attacks. Two years ago I quit my high powered, high stress job and went on disability (yes, social security sees this is a disabling disease) since then, my attacks are less frequent and less sever.
It is a constant battle living with this and no one really understands the magnitude of this disorder because when people see us we look normal and healthy. It is very difficult to wrap your mind around accepting this because there is no consistency to this disease. I know there were times when I question if I am really sick and then of course an attack will come and remind me.
It's wonderful that this group had started because I have felt so alone with this.
Sue
Hi SunShine,
The Serum Protein Electrophoresis (SPE or SPEP), Urine Protein Electrophoresis (UPE or UPEP), IFE are often performed in Amyloidosis patients. Other tests are the abdominal fat pad biopsy, 24 hour urine study, serum creatinine and creatinine clearance. All of these are relatively simple tests that can help determine the presence of amyloid. I have copied some info about FMF for you and have included it below.
Familial Mediterranean fever (FMF)
FMF is the commonest inherited fever syndrome. Although the prevalence is higher among people of Mediterranean ancestry it can occur in almost any ethnic group. In most cases the first attack of FMF occurs in childhood. Attacks usually last 3 days and consist of a high fever and severe pain in the abdomen or less frequently the chest. The pain may be so severe that the first attack is thought to be appendicitis. Between attacks, affected individuals feel entirely well and grow and develop normally.
FMF is due to the inheritance of two abnormal copies of a gene, one from each parent, described as autosomal recessive inheritance. This means that if both parents carry the abnormal gene, each child has a one in four chance of inheriting the condition. Brothers or sisters of an affected individual also have a 25% chance of having two mutations and developing FMF, and a 50% chance of carrying one abnormal copy of the gene (a carrier). FMF carriers very rarely develop symptoms and are very unlikely to have an affected child if their partner is not a carrier. FMF is now known to be caused by mutations in the MEFV gene which encodes a white blood cell protein called pyrin. The mechanism whereby abnormal pyrin causes fever is not fully understood. It is thought that pyrin may make white blood cells ‘overactive’ so that attacks of inflammation occur spontaneously.
The treatment for FMF is a drug called colchicine which is effective at preventing attacks in the vast majority of patients, so long as sufficient doses are taken. Colchicine has been very widely used and more than 30 years experience in FMF has shown it to be very safe at the usual doses of 0.5 to 2mg per day. Colchicine is also effective in preventing development of AA amyloidosis in most patients with FMF.
AA Amyloidosis is very slow to develop and will target your kidneys if preventative measures are not taken. A new treatment with a targeted inhibitor molecule is anticipated soon. The best advice I can give you is to take your meds regularly!
Paula
My daughter went to an allergist/immunologist that kept asking about our family history. He felt she had these symptoms but she doesn't have mouth sores (?). She has the flareups (abdomen) and knee pain and now neck pain. She has the chronic respiratory problems. The only test that has been positive is during a flareup high WBC and some protein in urine (usually dismissed). the had gastritis and spots in her stomach during an upper/lower but he didn't know what the spots were from. The immun ran a lot of test and the only test that was low was IGG but no subclasses which is rare. In she is on ppo but that's all. Her stomach hurts all the time but she feels like she is dying when she flares (we haven't had one since oct). Does this sounds like you?
<GaPeach>,
You mentioned something about montoring your liver and kidney functions...I also have FMF, and was wondering if an increase in your liver function could mean your are getting amyloidosis?? Any information would be great....
Hi Raz,
I am an amyloidosis patient and work closely with the Amyloidosis Support Groups. If you would like more information about Amyloidosis you can visit www.amyloidosissupport.com or if you would like to join our online support group list please go to www.amyloidosisonline.com. We also have face to face support group meetings that are held in various locations around the country. They are listed on our website at the first email address in this letter.
Are your doctors monitoring your kidney and liver functions? In Secondary Amyloidosis (AA) the organ most often involved is the kidneys, but GI tract, liver and heart can be involved as the disease progresses. Symptoms include protein in the urine, edema, weight loss and fatigue. For more information you can call our toll free hotline at 1-866-404-7539
Paula S.
GA/FL Facilitator
Amyloidosis Support Groups
At around your sons age I did have pain in that area.I had fetal position cramps that would last for days.The colchicine didn't help.I realized later that my body wasn't used to the colchicine yet. My attacks were worsened by the food i ate and my stress with my family.The less stress and healthier foods helped.I stopped taking it around the age of 18 and changed my food and life style it helped where I had no cramps or pain ever till the age of 35.I lost 40 pounds in a month for no reason.The doctors thought i had cancer .I went through all the test and it was negative.Turned out I got a complication from not taking the colchicine which led me to amyliodosis.The doctors told me if I took colchine all through my life it would of not activated the amlyodosis.Anyway with blood pressure medicine and a better diet I improved my health. So far no complications.Hope this helps.
Raz, Did you have severe testicular pain related to your FMF??? My 18 yr old son has been having very severe testicular/groin/abdominal since April or 2008. After 6 months of searching for answers at several hospitals in the Indy area, we were finally given a diagnosis of FMF from the Cleveland Clinic. They are basing the diagnosis on his symptoms because there was no mutation on his MEFV gene. He was placed on colchicine 3 months ago but his is still having attacks every 12-14 days. Some attacks only last 1 day but others as many as 4-5 days. He hardly ever has any fevers but mainly just the severe pain. He was just turned down in a study they are doing on FMF testing with a new drug. It is really hard as a parent to see my son go thru this whole ordeal. It is really taking a toll on all our families lives. Any information you could provide or help with would really be appreciated.
you can check yahoo fmf support groups, i think you can find a lot about fmf there.
BTW, where do you live?
Add to the discussion