Multiple Sclerosis and Autoimmune Related Diseases
My story begins in the year 1978. I woke up one morning and could not get out of bed as I cannot move my legs or left arm. I am only 18 yrs old. I went to the hospital, was admitted for a week, but only to discharged by the hospital, with no diagnosis except that I still have Psoriasis's as well as Psoriatic Arthritis which started at age 13 yrs of age.
Several Weeks go by and I’m getting worse, I have red raised nodules on the shins of my legs below my knees. Im back in a different hospital and they put warm towels on my legs. They take pictures of my legs for a medical book. My legs are warm to the touch and very painful. The doctor’s are baffled and send me home again with no diagnosis.
After being home for a few weeks of horrific pain, I’m finally carried in by my father and again admitted to a different hospital.
The doctors tell my parents that they think there may be fluid in my ankles because they are swollen and red and that I will never walk again. But thank God there was no fluid. I spent a week in the hospital only to have them discharge me with a diagnosis of Sarcoidosis and Erythema Nodosum.
They thought it could have also been Polio or Rheumatic fever and so I spent the next 9 months in a wheelchair, because I just couldn’t walk.
So I cant walk, I have Psoriasis's, Sarcoidosis, and Erythema Nodosum, and I was receiving steroid injections in my ankles and taking liquid painkillers just to be able to walk & function.
It’s now May in the year of 1995. I am giving birth to my second son by C-section. During this 3-day experience the only symptoms that I had was severe tremors and headache. The nurse said it was normal after a C-section. I didn’t agree, as these tremors were involuntary and uncontrollable. They had given me Ativan.
Finally, my husband and I left the Hospital and took our baby home. Two nights later after being at home, I had to go back to the E.R. as I had a severe headache and my blood pressure was up. The doctors gave me a CT and a shot of Demerol, and sent me home. They said I was fine. I knew I was not.
The very next day, I literally woke up feeling like I only had a head in the bed!! I could not feel my body parts especially from the neck down to my toes and I had no control of their movements. I was numb from the neck down and unable to walk without assistance. Today, I have learned that what I had experienced has a name, “PROPRIOCEPTION”, another major symptom of MS.
At this point my speech started to slur. My husband drove me back to the hospital. By the time I entered the emergency room, I had no vision, I was blind and within hours, and I felt as if I were paralyzed. I could not respond to any of the doctor’s commands. I simply did not know how to respond. Yet I could hear every word they spoke.
After being admitted for weeks and after undergoing many, many tests and having had Nitroglycerin put under my tongue every few hours, the only diagnosis that I received was that I had Post Partum Psychosis and that I needed to see a Psychiatrist.
Although, I remember a Neurologist checking my balance before I was discharged, and because I had a slight responding reflex; he said I was fine, yet... I still could not see or walk correctly. I had no perception of time or space or even where I was. I could not drive a car, as I didn't know how? I relied on my husband for everything that had to do with thinking.
As time went by my vision finally did come back as tunnel and “mirror like” vision. I was discharged from the hospital with a 1mg of prescription Ativan 3x a day as it calmed the tremors that had overcome my body as I left the hospital. But I listened to the Doctors recommendations and I did go to see a Psychiatrist and had a Neuropsychological evaluation.
It was my Psychiatrist who said I had every symptom of Multiple Sclerosis and suggested that I see an MS specialist. So I made an appointment to see an MS specialist who finally diagnosed me with Multiple Sclerosis. He was also very upset at the other so-called educated Doctors, as they had no idea as to what they were looking at when viewing my MRI’s.
He said it showed that I had MS on all different MRI’s. He also said I had a host of other autoimmune related diseases as well.
In June of 2001, I was told by this MS Specialist that I had a secondary disease diagnosis called Multiple Sclerosis. I had to undergo speech and cognitive therapy for almost 3 years and I had to be detoxed from a medication called Ativan that I was now addicted too for the Tremors and was now shutting down my digestive system. I was taking up to 18 mg a day of Ativan because of a MISDIAGNOSIS.
I feel that telling my story may benefit others who maybe experiencing or already has experienced this same kind of situation. I’m also telling my story so that I may one day save someone’s life.
One doctor wrote a letter to my Psychiatrist that he had spent over an hour counseling me on my symptoms and complaints. Others said it was all in my head.
Since my diagnosis of MS, I have also been diagnosed with ITP (Immune Thrombocytopenia Purpura) as well as Lupus, Sjogrens, Uveitis and Blifferitis.
Today, I have become a self educated and volunteer leader for a nonprofit organization called American Autoimmune Related Diseases Association at www.aarda.org.
We now have a support group in the local Detroit area with meetings held once a Month, March thru November only for the comfort of our members.
Our autoimmune support group is the first in the nation, as we bring education, research and support, to the growing public and to the healthcare system on over 100 autoimmune related diseases.
We are located at Henry Ford Medical Pavilion,
16151 19 mile road & Hayes, Clinton Twp, Mich. 48038.
Meetings are held every 2nd Thursday evening of the months March thru November only.
4th Floor-Conference room 3
Times: 7:pm to 9:pm
We look forward to seeing you all In March. Please contact www.aarda.org for more information or call 586-776-3900 04 586-741-9918.
Thank you so much!
Volunteer Peer Group Leader for AARDA
I am the group support leader to AARDA's Support Meetings at 16151 19 Mile Rd & Hayes, Clinton Twp, Mich, 48038-Henry Ford Medical Pavilion-4th floor. Bringing national and community awareness to others is what we try to do in our group as there are over 100 autoimmune related diseases that are often misdaignosed or go undiagnosed before they are treated. By then its often too late.
Diseases such as Multiple Sclerosis, Lupus, Scleroderma, Sjogrens, Myositis, Diabetes, Celiacs, Fibromyalgia, R.A., Psoriasis, Crohn's , Thyroiditis Hashimotos and more!!
Our support group has professional speakers of all professions, including , Immunology, Rheumotology, Neurology, Other Foundations, Social Security Attorneys, Dieticians and more! Our meetings are free and we take pride in helping new members who suffer from these devastating debilitating diseases. We want you to know that together we can connect the links to these chronic diseases. Please join us!
This organization has been very helpful to my family and I. Provided a person to talk with and answer our questions.
Four and 1/2 years ago, my body decided to attack itself with such ferocity I went from walking to wheelchair in 30 days. I went from being a competitive athlete, Coach and trainer to a drooling, vomiting bed and chair-ridden shell of myself, riddled with excruciating pain I had never experienced in my life-time. After several hospitalizations, surgeries, biopsies with no explanation as to why my body was failing on me, I thankfully stumbled across The American Autoimmune and Related Diseases Organziation (AARDA). I realized I was not the only person who was suffering. This Organization has saved me. The interaction within the Organization and it's members has been phenomenal to say the least. Through grassroots fundraisers, walks, International Summits, newsletters this Organization has provided so much information for it's members. I have helped organize 2 grassroots fundraisers, raising over $5K this year alone for AARDA. We could NOT have done it without AARDA's help! They provided fliers, banners, shirts, rubber bracelets, etc.! They were awesome! Treatment for these diseases is sketchy, at best. These diseases seem to be in the 'infantile' stage of awareness and funding. Millions of people are fighting these diseases all on their own which, and I can tell you from experiencing the fight every hour of every day, can be incredibly depressing and lonely. AARDA has done an amazing job in helping to get the word out, increase funding, finding and getting approached by well known researchers, scientists, doctors and specialists who want to be involved with AARDA. I and my family have benefited tremendously by being a part of the AARDA family.
I know Karen has been on top of things to bring new information to the members about resources and research that is pertinent to the group. She is very trustworthy and caring for all the members.
It's a scary thing when the doctor tells you you have "something." Internet searches can only do so much to give you information about what you can expect in the coming years. AARDA's monthly support group meetings mean the world to me. There are always handouts about the diseases and the speakers provide me insight on things I can try to do to help my symptoms. Speaking with fellow sufferers makes me feel less alone. Don't know what I would do without these folks!
I am a person who has MS, one of the many autoimmune diseases. I appreciate being able to attend the free support meetings each month held in Clinton Township. They offer educational as well as a personal view of autoimmune diseases, diagnosis, and offer a medical background by the many physicians and health care providers that attend and share their knowledge of autoimmune diseases with the group.
The AARDA is a org that helps people by giving them information about AI diseases. They are also involved in reaching the medical profession to spread info, increase awearness and help get laws passed to aid in funding and research. There are over 50 million suffers of Autoimmune diseases, the AARDA website gives lots of info and a place to talk with others who have AI problems. Six years ago when I found out I have an AI disease, the AARDA help me accept my disease and lead me to understand my disease better. I don't know what I would have done if I had not found this wonderful organization. Thank you all who work and support the American Autoimmune Related Diseases Association.