Recently diagnosed with MWS
Written by malinda, published about 1 month ago.
My Story
Hello everyone,
It’s funny but whenever asked about my health, I’d always just gloss over it, since no matter how I’d explain, people just couldn’t understand. But after reading all your stories, I finally found a place where people do understand and where I’m no longer the only one.
As far back as I can think there’s always been something wrong with my health. Most of my childhood was spent in and out of the hospital, so much so that I had to repeat the 2nd grade. I’ve been poked, prodded, biopsied… You name it they did it. And with no others within my immediate or extended family having anything remotely close to my symptoms, all they ever came back with was an “Ill Defined Connective Tissue Disorder”.
Growing up with my hives, or allergies, joint pain, fatigue, migraines and just never feeling very well was really difficult. Kids, and even some parents, can be very mean and tend to pick on people who look different. I grew up to be very shy and don’t like to draw attention to myself.
I’ve had doctors tell my parents that I wouldn’t live past the age of 10 (I was actually 12 when they said that), or that I would never graduate from school. Well I became a registered nurse, have been married over 10 years and have 2 children of my own. So there!!!
From the age of 16, I am now 39; I’ve been followed by the same Rheumatologist for Systemic Lupus and RA. But very little was ever done, since I could still “function” and that abnormal test results were to be considered normal for me.
The first time I was given Prednisone my hives went away, I had energy and I was so happy to finally know how it felt to be normal. But even though it was a low dose, it wasn’t long before I started getting all the side effects. Plaquinil did nothing for me, and I even had doctors prescribe antidepressants and Ritalin which I refused to take. It gets tiring hearing people tell you it’s all in your mind, it’s emotional or your diet needs to change. Yes things got worse when upset, cold or tired, but no my problem isn’t psychological!
In the last couple of years my health has been on a steady decline. I kept loosing weight and had difficulty with certain foods and started to get checked for possible IBS, colitis or even Crohn’s Disease. After coming back negative for those, it was through biopsies in my digestive track that I was diagnosed with Secondary Amyloidosis. But by then I had lost so much weight that I was hospitalized for 6 and a half weeks in the fall of 2011 and I’m now on a home TPN 16 hours a day with a central line just under the clavicle. So far, from the various tests and biopsies, I have Amyloid deposits in my digestive tract, kidneys and lymph nodes.
It was in the weeks before being hospitalized that I was referred to the Immunology/Rheumatology clinic at the hospital, who immediately ruled out Lupus and RA, even though that’s what I had always been told I had, and went ahead with genetic testing and coming back with a diagnosis of MWS. It’s not confirmed, and I doubt they ever will, but the Amyloid is most likely the result of not having been treated with any anti-inflammatory over the years.
I started on Ilaris every 8 weeks in November and have no more rashes or joint pain.
My two children are currently being genetically screened for MWS as my son, age 3, also has the hives and swollen lymph nodes.
I am so thankful that I found the CAPS community. It is so nice to finally know that I’m not alone.
Thank you.
Written by malinda, published about 1 month ago.
2 comments for «Recently diagnosed with MWS»
[ Expand all ]
Malinda,
Thank you for sharing your story. You are a very amazing person, and have bee through so much! I am so glad that the Iaris is helping, and I hope that the amyloid deposit issues will improve over time (some people have had improvement, but it can take years.) I am sorry to hear you are on TPM and have a central line, No fun, Are you able to eat or drink at all now? If you need anything, feel free to contact me. I run The NOMID Alliance www.nomidalliance.org and have one son with a spontaneous mutation for CAPS that has caused NOMID. I hope that your son will be able to get onto treatment earlier in life if he has CAPS so he will not have to endure what you have been through.
Best wishes for a good 2012 with improved health,
Karen Durrant
Thanks Karen. I am on a low residual diet (no fats, little to no fiber, no spices. And thankfully all health foods are off limits) and am able to eat small amounts and drink small amounts. For the most part it helps lessen the GI problems. I am hopeful that I will be able to get rid of some of the amyloids over time. I'm sorry to hear that your son is affected. The gentic counselor believe it is a spontaneouse mutation for me as well.
Best wishes for you and your son as well.