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Kimberly
@sebley12

Posts: 85
Joined: Aug 02, 2011

30 Years of Misdiagnosis.

Posted by @sebley12, Aug 10, 2016

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, and 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. I’m back in a different hospital and they put warm towels on my legs. They took 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 with 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 can’t walk, I have Psoriasis’s, Sarcoidosis, and Erythema Nodosum, and I was receiving several steroid injections in my ankles and taking liquid painkillers just to be able to stand.
After almost a almost year it seemed to have just gone away.

It’s now May in the year of 1995. I have given birth to my second son by C-section. During this 3-day experience the 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 gave me Ativan to control the tremors.
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.

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. My doctor prescribed 1mg of Ativan 3x a day as it calmed the tremors that had overcome my body.

I listened to my Doctors recommendations and saw a Psychiatrist and he had performed 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 upset that it took so long for me to get a diagnosis.
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 had to undergo speech and cognitive therapy for almost 3 years and I had to be detoxed from the 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.

After countless doctor visits and unnecessary surgeries and spending thousands of dollars in co-pays it took almost 30 years to get a proper diagnosis. 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 Perpura) as well as Lupus, Sjogren’s, Uveitis and Optic Neuritis.

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.

Today, I have become a self educated and volunteer leader for a nonprofit organization called American Autoimmune Related Diseases Association at http://www.aarda.org.

I now have a support group in the local Detroit area with meetings held once a month, March thru November.

My 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. Because you as a consumer pay for good Health Insurance, you should also get the correct diagnosis when seeing a health professional. It is your right.

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.
4th Floor-Conference room 3
Times: 7:pm to 9:pm

We look forward to seeing you.
Please contact http://www.aarda.org for more information or call 586-776-3900 or 586-741-9918.
Thank you so much!

REPLY

Just to clarify, are you advocating driving toward a diagnosis by way of joining AARDA and attending a support group?

@johnwburns

Just to clarify, are you advocating driving toward a diagnosis by way of joining AARDA and attending a support group?

Jump to this post

No I am the founder and volunteer leader of this autoimmune support group and it is the first in the nation of its kind. We are located at Henry Ford Pavilion, Clinton Twp, Mi 48038 4th floor, we have a meeting tomorrow night and it is from 7;pm to 9;pm. We also have a few members from Inspire as well joining us as there isn’t much information out there about these autoimmune related diseases. Most professionals have only hrs of schooling on the immune system and some do not know how to say Scleroderma.
My group is free, educational and we always have professional speakers to discuss chronic illness’s and autoimmunity.
I do not work for http://www.aarda.org but I am a volunteer for them as they are a nonprofit association.

@johnwburns

Just to clarify, are you advocating driving toward a diagnosis by way of joining AARDA and attending a support group?

Jump to this post

I have to disagree. Autoimmune disease is not a new thing. Lupus was discovered in 1948, at Mayo in fact, RA not long after (not at Mayo).

http://centennial.rucares.org/index.php?page=Autoimmune_Diseases

Rheumatologists deal with these diseases as a core feature of their practice so I don’t follow your proposing autoimmunity as a recent breakthrough or novel idea.

So, why do you think folks posting here would need to be guided to aarda.org or your study group to gain insight into their condition(s), which may or may not be autoimmune related?

Call me skeptical.

@johnwburns

Just to clarify, are you advocating driving toward a diagnosis by way of joining AARDA and attending a support group?

Jump to this post

Hi John, I agree with you, autoimmune diseases have been around long before you and I were born, what I am trying to do is to create a new disease category, as there are a whole lot of people who are just kind of stuck on a singular disease category such as Lupus, or Diabetes or lets say Shingles and so we have many pharmas making buco bucks on these singular disease treatments when there could be someone who suffers from overlapping or mixed connective tissue diseases and can not tolerate treatments for each of these diseases. There would be a whole lot of side affects and so much more damaging than good. We also don’t need more drugs, we need more research on the causes of these debilitating diseases. We now have an Autoimmune Center in Midland Michigan that one can go too if they have a difficult time getting diagnosed properly. I welcome you to check it out. Its all about bringing awareness, education and research to over 100 autoimmune related diseases.

That’s all very epic and visionary but if we have someone who comes to the forum who has broad spectrum symptoms that could be covered by say, Lupus, I’m not going to encourage them to seek a new disease category, I’ll encourage them to stick with the established paradigm of standard of care which should only be altered by way extensive studies.

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