Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
I was diagnosed with Polymyositis in 2005; it was the year where I would have to learn, how it would feel to walk a lonely path to reach my ultimate goal to put my disease into remission and to recover all of my muscle strength. It was also the year where I would have to learn how it feels to be disabled. However, I wasnt expecting because of my disability, I would lose my friends, my family, and my significant other who was really close to me. I just could not understand why my doctors never taken the time to explain to me, how and why my life will be forever changed. While laying on the hospital bed, I envisioned my entire life and I watched it in slow motion. On that bed, I pretended that I had experienced a nightmare and if I woke up, it will all go away; yet, that was not my case. During my discharge, the discharge nurse provided me with a set of instructions on how to take my medications and when I would need to follow up with my new doctors. I remember how I felt that day. I remember feeling that no one care and how difficult it would be to fight this on my own.
I reminisce the days when I was highly active in basketball, and cross-country running. I was always competitive. I love pushing myself to the extreme, but when you have Polymyositis. It depletes almost all of your energy leaving you extremely fatigue and extremely weak. Before I conducted my research on what is Polymyosists, I just couldnt understand why I always felt tired and lazy! I thought I was losing it. My mind would tell me to get out of bed and do something, yet, my body would oppose that idea and tell me to rest more. With time and research, I discovered that I wasnt losing my mind and that it was one of the symptoms of this disease. It wouldve been nice if one of the doctors would have explained this to me.
In my opinion, because Polymyositis is a rare disease, most neurologists and rheumatologists are not well trained on how to effectively treat myositis patients. Because of this, the majority of these specialists are likely to treat their Polymyositis patients like they treat their rheumatoid arthritis patients. It is sad to say, but this is the one of the main reasons why doctors misdiagnosed people that are suffering from muscle inflammation. In fact, I was one of them. When I went into the emergency room for the first time to complain about my muscle weakness and fatigue. After the doctor ran several tests and did a physical evaluation, he had determined that I had muscular dystrophy! Can you believe that?
May 25, 2015, will make it 10 years since I have been dealing with this debilitating disease, but I have not given up. From 2008 to 2011, I worked for a computer company as their senior technical engineer. Last year (2014), I graduated and received my Business Administration degree. In the end, one of the things I have learned while dealing with Polymyositis is that its very important to remain positive, eat healthy, consume lots of water, and be proactive. It definitely helped me get through the times of adversity.
These last several months, I noticed my overall strength was starting to decline. I had mentioned this to my doctor and he decided to run my CPK test. The result had shown my CPK had increased to 1600 (before it was at 180). At that moment, I knew I had to act fast or I would end up in a wheel chair. However, there is one problem for me, all of the first line and second line treatments that I have been taken are no longer improving my strength (Methotrexate, Imuran, Cellcept, IVIG (Gammagaurd), Prednisone, Humira, and Rituxan).
As my last resort or I should say my last option. I have decided to undergo stem cell therapy. The head doctor whos in charge of immunotherapy have reviewed my medical records and approved me to come in for an evaluation. Currently, I am waiting for the nurse to call me to schedule a date for me to come in.
Pray for me that the head doctor approves me to have the therapy done and that my insurance is willing to pick up the bill.
I would like to thank everyone for taking the time to read my post!
I reminisce the days when I was highly active in basketball, and cross-country running. I was always competitive. I love pushing myself to the extreme, but when you have Polymyositis. It depletes almost all of your energy leaving you extremely fatigue and extremely weak. Before I conducted my research on what is Polymyosists, I just couldnt understand why I always felt tired and lazy! I thought I was losing it. My mind would tell me to get out of bed and do something, yet, my body would oppose that idea and tell me to rest more. With time and research, I discovered that I wasnt losing my mind and that it was one of the symptoms of this disease. It wouldve been nice if one of the doctors would have explained this to me.
In my opinion, because Polymyositis is a rare disease, most neurologists and rheumatologists are not well trained on how to effectively treat myositis patients. Because of this, the majority of these specialists are likely to treat their Polymyositis patients like they treat their rheumatoid arthritis patients. It is sad to say, but this is the one of the main reasons why doctors misdiagnosed people that are suffering from muscle inflammation. In fact, I was one of them. When I went into the emergency room for the first time to complain about my muscle weakness and fatigue. After the doctor ran several tests and did a physical evaluation, he had determined that I had muscular dystrophy! Can you believe that?
May 25, 2015, will make it 10 years since I have been dealing with this debilitating disease, but I have not given up. From 2008 to 2011, I worked for a computer company as their senior technical engineer. Last year (2014), I graduated and received my Business Administration degree. In the end, one of the things I have learned while dealing with Polymyositis is that its very important to remain positive, eat healthy, consume lots of water, and be proactive. It definitely helped me get through the times of adversity.
These last several months, I noticed my overall strength was starting to decline. I had mentioned this to my doctor and he decided to run my CPK test. The result had shown my CPK had increased to 1600 (before it was at 180). At that moment, I knew I had to act fast or I would end up in a wheel chair. However, there is one problem for me, all of the first line and second line treatments that I have been taken are no longer improving my strength (Methotrexate, Imuran, Cellcept, IVIG (Gammagaurd), Prednisone, Humira, and Rituxan).
As my last resort or I should say my last option. I have decided to undergo stem cell therapy. The head doctor whos in charge of immunotherapy have reviewed my medical records and approved me to come in for an evaluation. Currently, I am waiting for the nurse to call me to schedule a date for me to come in.
Pray for me that the head doctor approves me to have the therapy done and that my insurance is willing to pick up the bill.
I would like to thank everyone for taking the time to read my post!
I took your advice and I registered with TMA. As you have mentioned, I believe it will make more sense to post my updates using Stem Cell to treat Polymyositis on the TMA community Forum (under Clinical Trials).
Thank you TRPT....
Could Stem Cell Therapy be another option to treat Polymyositis? I have had the luxury to speak to two individuals who decided to undergo HSCT (Hematopoietic stem cell transplantation) at the Northwestern Medical in Chicago. For privacy reasons, I will not disclose their names or their gender. I personally spoke to both individuals over the phone, and I can say. It felt good to hear a person that I now call my friend(s) who understands and can relate to the problems that people with Polymyositis deal with every day. However, I knew I had to remain focused and complete my task. I knew I had to extract as much information as I can, so I can inform or report to those who have Polymyositis - why they should or why they should not undergo HSCT. I wanted to do this without being bias. But first, I genuinely wanted to know - what kind of person are they? What do they like to do? While conversing with both individuals separately, I started to make notes of their characteristics. I was able to gather the following: 1. Both individuals are full of love and full of life. 2. They both have an abundant of knowledge about Polymyosisits. 3. In general, both individuals are very informative. 4. Both individuals are compassionate people. In the end, I was intrigued on how they were adamant about not giving up.
When someone tells you that they havent been able to walk for 2 years and that their significant other is the one who have been assisting them with showering, assisting them with dressing and removing their clothes, and helping them get into and out of their bed. Immediately, I realized that their health situation was very severe. One of the individuals informed me, that it was their doctor who recommended stem cell therapy as an alternative option. The other individual along with their spouse decided after extensive research to proceed with the HSCT. Now, just under 6 months since their transplant, I will like to share both individuals post HSCT reports. After receiving the transplant, one of the individuals is now able to do the following: The person is now able to drive, shower without any assistance, dress themselves without any assistance, and is now able to get in and out of bed without any assistance. The other individual who hadnt walked in 2 years is now walking. In addition, before the transplant, that individuals CPK (Creatine phosphokinase) was at 1600, and now its at 400. Both individuals informed me, they no longer have an issue with fatigue.
After listening to both individual stories. I knew without a doubt that it was obvious. Clearly, there is evidence that show that HSCT appears to be an effective treatment for Polymyostis. I want to thank them - these two brave individuals - for undergoing HSCT clinical trial at Northwestern Medical. Not only did they contribute to medical research; their braveness has inspired hope for those who are looking for an effective treatment, but more importantly, for those who are looking forward to returning back to living a predominant life. Finally, I want to thank both individuals for giving me the opportunity to speak with them and allowing me to hear their personal life experiences.
Disclaimer
The medical information is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
There are many different types of stem cell treatments. I hope the one in your clinical trial will give you the long-term type of results that you expect.
Keep us posted.
If accepted, I will also be participating in the same HSCT study at Northwestern Medical. My doctor has already written a letter to Dr. Burt to consider me for the stem cell therapy.
I plan to document and blog all of my good and bad experiences while undergoing the treatment.
For clarification, so that people are not provide false information or doctors and facilities claiming they do Stem Cell Therapy.
There are only 10 HSCT facilities in the world and Northwestern Medical is one of them. In addition, any Stem Cell Therapy that does not include chemo is a scam.
For more information, here is Dr. Burt website http://www.stemcell-immunotherapy.com/
You have not actually tried stem cell therapy yet. I am concerned that you seem to be advertising and sort of recruiting for a treatment that you have not even tried yourself. Currently, stem cell therapy is not approved by the FDA as an actual proven treatment for myositis. I do hope that you will achieve the results that you are anticipating with your clinical trial. You mentioned that you were doing the follistatin trial earlier and now you are discussing HSCT which seems like a different treatment.
What ever treatment you decide to do, I wish you well. I hope your treatment choices will give you the results you hope to achieve.
Im so happy that conventional/traditional medicine was able to treat you; even more, that youre doing well and youre able to do all of the things that you was not able to do after you got sick. Although, I am not against conventional medicine, we all are aware of the risks and side effects of immunosuppressant drugs. By taking any immunosuppressant for a long period of time, that person puts him/herself at a greater chance of infection; even worse, at a higher risk for cancer. Because of Prednisone (one of the many immunosuppressant drugs to treat autoimmune diseases), I have diabetes and hypertension; as a result, I have to take insulin and high blood pressure medications to control both my glucose and high blood pressure. Because I have to take these two medications, it also means that I have to see an endocrinologist and a cardiologist. More doctors to address symptoms that are not the root of the problem. Ironically, if I was to stop taking Prednisone, I do not experience any of the symptoms of diabetes and hypertension. However, I need to take Prednisone in order to conduct my daily activities. Unfortunately, this is the double-edge sword that I have to deal with when taking this medication. Furthermore, these are just two of the many side effects of Prednisone. Then you have Methotrexate, Cellcept, and Imuran. All of these immunosuppressant that I just mentioned have serious toxic reactions (which can be fatal).
First, I must advise you that I am a writer. With that being said, I am constantly communicating with doctors and interacting with individuals who are suffering from an autoimmune disorder, researching and investigating. Let just say, I have been doing this for a while. In the end, I plan to cover my life with Polymyositis into a memoir.
You had said that I push this hospital and treatment very well well thank you. However, I must advise you that its the patients, not the doctors, who inform the rest of the world if their treatment was a success or not. Without their testimony, the doctors (in this case Dr. Burt) would have no credibility. You have also said that you are sorry that I need this treatment, because most people on here will not need this treatment. In regards to the people on this site that you believe they may not benefit from HSCT, youre entitled to your own opinion. My job is to spread the word to all those who are suffering from any autoimmune disease. When traditional medicine fails for anyone, please consider HSCT. As for me, I am so excited. I have nothing to lose, and everything to gain. You must not know who Dr. Burt is. There are doctors who fly from all over the world to come to his event just to see him speak. Even more, I dont think you really understand the magnitude of people that are trying to get accepted into these HSCT facilities, especially the one in Chicago. I recently joined one of the two HSCT closed groups on Facebook. I never came across so many individuals with Polymyositis from all over the world. And yes, I wanted to speak to all of them. To get their testimonies, so other people can hear. They could've left and move one with their life, but instead, they decided to inform those who are new with their testimony. For privacy reasons, I will not disclose my friend name on Facebook, but this is what the individual had to say today. Almost forget I celebrate 5 months post HSCT ! I celebrate everyday with those I love and try as much as possible to reach those that can also be saved by HSCT. I want to guys to pray for my new friend David who has Polymyositis like me which atrophied all ur muscles. We talked the other day n will meet in Chicago in July for my 6 month eval n his evaluation to get into the program. So all prayer warriors please pray he is accepted. If u friend him u can see that he has a gofundme page. This guy was so thankful for just taking to me; how sweet! Let's pray to give him that gift I received because of all ur prayer. Love u all
Another person: I am praying for David that you get the help my niece (the person name )did
I want to make this last point. When a person is thinking about purchasing a new appliance for their house. What is the first thing that person is likely to do? More than likely, he/she is going to go online and browse to a consumer website, such as consumer report.com. Next, the person will hear what the reviewer has to say about the product. However, the person is more interested and concern about what people in the comments section are saying; yet, do you know why? Because these are the people who have purchased the product, so their comments hold more weight than the reviewer and are more likely to affect your decision on whether you will purchase that particular product.
Well, if youre willing to apply that method when it comes to purchasing appliances, why not apply the same method when it comes it comes to medical treatment? For instance, if you were to type in HSCT into YouTube and hit search. How many videos would you come across that are associated with Dr. Burt? Second, if you were to drop down to the comments section, how many people would say positive or negative comments about their stem cell transplant? Dont worry, I have gone out my way to retrieve some of those comments: this man literally saved my life. Do not listen to your doctor, go see this man if you want to be cured. Dont waste any time, hes the real deal. In the end, if you want to live a predominant life, then go out there and grab that bull by the horns.
I want everybody to watch an informative video. The name of this video is called Stem Cell Therapy: Dr. Roberta Shapiro - A NY Physician's Path to Panama. I have provided the link for you all below.
Thank you.
https://www.youtube.com/watch?v=Hq0vON_F-kU
First, I would like to say if I offended anyone in anyway, my apology. Second, I would like to make clear for those who read my posts. I do not advertise or receive any incentive from Dr. Burt or his staff or any facility that conducts HSCT. As I have stated, my diagnose is Polymyositis, therefore, I have no experience or knowledge on Dermatomyositis. Because of this, I have not provided any advice or support on Dermatomyositis within this support group. I have never mentioned that stem cell therapy is covered by the FDA; however, I will say for the record. If you have Polymyositis and you want to know if HSCT (Hematopoietic stem cell transplantation) that is done at the Northwestern medical hospital in Chicago is covered by the FDA. Then your answer is Yes. The FDA and IRB does covered it please review works cited. I would also like to state that I have never mentioned that I planned to undergo any operation or study associated with Follistatin. However, I did advise trpt1, on my post that I registered on the TMA website. The reason why I registered on the TMA, so that I can inform those who have Polymyositis, any update from me in regards to using HSTC when I go in for my treatment. I also advised trpt1, that the link she had sent me in regards to the clinical trial, was the one that I had already enrolled in which is the one at the Northwestern Medical Hospital.
So far, I have received many messages from many people on this site. I understand you wish to remain anonymous. I respect that and I will not reveal your identity. I will continue to update on this particular blog and if you have a personal message for me, inbox me.
Im here for you
Works Cited
http://www.stemcell-immunotherapy.com/about.html
Recently, I been receiving many messages on how do I deal with fatigue.
For the past two years, I have been taking Echinacea and Goldenseal, Caprylic acid, and Grapefruit seed extract. In addition, every morning, I cut up garlic into 3 to 4 cloves, and a half of cup of ginger and add everything along with 4 cups of water into a blender. I also eliminated sugar and high corn fructose from my diet.
Please consult with your physician first to make sure he/she approves this approach to deal with your fatigueness. Anyhow, I hope it helps.
Happy Father Day
You can add to your dietary supplement turmeric, It help me a lpt,
It's nice to meet you. Fatigueness is one of the most difficult symptoms of Polymyositis to deal with, so sharing any information on what has worked for you will help many.
Thank you Michaelvi.
DJ
Yesterday, my second rheumatologist wrote a letter of recommendation for me to undergo HSCT at Northwestern Medical. While evaluating me, the doctor had advised, if I was to undergo HSCT; not only will I feel relief, there is a high chance the disease will go into remission. For me, that is good news, because now I have two doctors advocating support that I undergo the transplant.
I also received my Real Estate Sales Associate certificate today. The people who requested to be my friend on Facebook can see it there.
With much gratitude and appreciation, I would like to thank you for showing your support. I really appreciate it. I will continue keep updating everyone with new information. I'm here for you.
Remember!
If you keep on doing what you always done
You'll keep on being what you always been
Nothing changes unless you make it change
First, I want to say that it is nice to meet you. Second, I am sorry to hear that youre in a wheel chair. I will pray for a speedy recovery for you, so that you will be able to stand up from your wheel chair and walk again. As you are aware from reading my posts - I have been dealing with Polymyositis for ten years, so I know exactly how you feel. When you mentioned about the medical profession not knowing about Polymyositis, I totally understand and agree with you. For better or worse, majority of the people that I have spoken to who have Polymyositis have said the same thing.I experienced the same problem with the head neurologist from Cleveland Clinic. After exhausting first and second line treatments, he was nice enough to admit to me, he didn't feel he could further treat me. Because of this, he referred me to Dr. Mammen.- the head doctor of the Myositis department at John Hopkins. If youre not seeing any relief or any improvement from your current doctor, dont be afraid to make a change. Remember, a doctor job is to get you close as possible to be able live a predominant life. Dont be afraid to ask your doctor questions such as What is the plan? How are you going to improve my situation?
I want to tell you dont give up Brenda. I know you have mentioned that your sons do not talk to you. However, you have people like me and the people on this support page to talk to. Although, we may be miles away; yet, were connected in so many ways.
I want to share with you my favorite Bible scripture. Jeremiah 29:11 For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.
Feel Better
DJ