About Multiple Sclerosis"
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 week's go by .. I’m getting worse, I have red raised nodules on the shins of my legs, and on my shins below my knees. They are warm to the touch and very painful. The doctor’s are baffled and again send me home with no diagnosis.
After 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 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 Romatic fever and so I spent 6 months in a wheelchair, because I had Psoriasis's, Sarcoidosis, Erethema Nodosum, Lupus, and I was receiving steroid injections in my ankles and taking liquid painkillers just to be able to walk & function. I also had Scleritis in my eyes and then, one day, it all just seemed to just vanish.
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 symptom's that I had was severe tremors and headache. The nurse said it was normal after a C-section. I didn’t agree, as it was.. involentary and uncontrollable.
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 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. Today, I have learned that what I had experienced has a name.. and that name is “PROPRIOCEPTION” We all need to learn about this!
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 was 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 countless procedures, 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. I remember a Neurologist checking my balance, and because I had a slight responding reflex, he said I was fine, yet... I still could not see or walk correctly. I could not drive a car as I didn't know how?
As time went on my vision finally did come back as tunnel and “mirror like” vision. I was discharged with 1mg of prescription Ativan 3x a day as it calmed the tremors that I had left the Hospital with. 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.. and he was also very upset as I brought in my past 4 MRI’s only for him to read.. as they all stated that I had MS on all different MRI’s. He also said I had a host of Autoimmune Related Diseases as well.
In June of 2001, I was told 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 that I was now addicted too for the Tremors.. and it was shutting down my digestive system.. because of a MISDIAGNOSIS. I feel that telling my story here would be of great knowledge to anyone who maybe experiencing... or already has experienced.. this same kind of story.
One doctor wrote a letter to my Psychiatrist that he spent over an hour counseling me on my symptoms and complaints.
I would hope that I could help all of newly diagnosed MSer's, as well as family & friends.. so that they may learn that they are not complaints, and .. as my being a patient and an example, as well as a testimonial to all of the above experiences, that NO PATIENT should ever.. have to go through any of the above mentioned.
What I really hope to accomplish here is that together.. as patients,and as members.. we can all make a difference and teach doctors and patients and Healthcare Providers to work together as a team.. to get the correct diagnosis.. and the right kind of medicine & care that we deserve so that no one is ever told that their symptoms are all in their head. We can do this with the help of Social Media!
I wish you all well! xoxo
WOW! What an amazing story ... Slightly similar to mine... Again, I must add ... SLIGHTLY similar...
I have had several trips to the ER and many, many diagnosis.... My MEDICAL MADNESS began about 7 years ago... From Chronic Anemia to Fybromialgia. Honestly, I was starting to think that My problem was mental and that I really was not feeling the starve aches and pains.... Last year in the month of April I was finally diagnosed after being admitted.... The neurologist spent 15 minutes with me and was stunned... Because of course by then I had every symptom ... From the unbalanced gait, burning, vertigo, slurred speech, and anything else you can think of... When I finally received the diagnosis... I must admit that I was scared... But I was RELIEVED... FINALLY! Since the diagnosis... It has been 11 months of hell... Recently I had an appointment with my rheumo and there seems to be possibility of LUPUS as well... I have been trying to educate myself so I can be better prepared when I meet with these sometimes incompetent doctors... Your ordeal sounds really tough ... You sound like you have a strong will power and I am glad you have been able to recover somewhat from the storm... I think your story is really important... And I want to thank you for sharing it...
I appreciate your response and Im so happy to know that there is someone other than me that has experienced some of what I have been through, I am now an advocate for Scleroderma , MS and other Autoimmune Related Diseases, and if you want to know how they are related, please go to www.aarda.org as this site will help you understand better of how the diseases are all related. There are video's as well to watch. I also advocate for this association. Best of luck to you and hope to talk soon. xoxoxoxoxoxoxo
Thank you for the additional information. I will definitely look up the web site.
We will definitely keep in touch.. ;0)
All of that is so awful. I am so sorry you had to go thru that. I am in the DX stage but fortunately I am getting good care. Thanks for sharing your story, it makes one realize how fortunate they are.