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"Diagnosed with Multiple Sclerosis 35 yrs after a major relapse"

Posted by @sebley12 in Brain & Nervous System, Aug 12, 2011

Hello Mayo clinic friends, my name is Kimberly Radomski... I have submitted my Social Media Essay here about what I went through to get an accurate diagnosis of "MS" this is an autotimmune related disease like other diseases that healthcare providers simply are unaware of. I love to help research and educate as I have a support group on FB and I am an advocate for the AARDA.ORG association as well as Scleroderma Foundation. I hope those of you who have MS or think you may have MS will read my story, Im not asking you to vote for me, I just want to share and educate others so they don't ever have to experience unnecessary tests and procedures just to be misdiagnosed. Enjoy & thank you.

Tags: multiple sclerosis

Jim Pantelas likes this

Posted by Anonymous-e2cdb4c0, Nov 11, 2011

Kimberly, I'm interested in your FB support group and would like to read your story. I am not able to get in to see the neurologist until Dec 23rd however I have classic symptoms consistent with MS. I had back surgery 8 wks ago (L5/S1) and have had much worse symptoms. It's scary and I can't get enough information. The DR in the hospital did a brain scan, found at least 1 lesion and prescribed Neurontin. He said I had peripheral neuropathy. I don't see anything connecting the drug with my symptoms, not PN or MS. I'd like to be friends with an educator.


Posted by @sebley12, Nov 12, 2011

Hi Anonymous,
I would be happy to add you to my FB Scleroderma & Autoimmune Related Diseases Group. I don't know how to add you if I don't know your name unless you have any suggestions. I do understand that some people like to remain private and thats fine too. However I would be more than happy to add you to the group.
I would also like to hear more about your story as well and all you have gone through..which sounds like a whole lot! My FB group is under the name, Kimberly Darmis Radomski. I hope I can be of help to you. Thank you for enquiring. Take care of you.


Posted by @terrielee, Nov 12, 2011

Hi Kimberly! I'm so glad to hear from you! I will tell you as much as I can. I have had psoriosis for 45 years. As I remember it is an autoimmune disease. I take enbrel which suppresses the immune system. It has been under complete control for several years with the enbrel. I have often wondered if I had MS when I would have small symptoms, like a glare across one eye that might last 1/2 an hour to 1 hour. Vertigo that would be in spurts, but 1-2 times a year would last 24 hours and be so bad I couldn't move my head. Several symptoms that I have been able to get through. Then I had this back surgery and everything has just overwhelmed me.I have had very bad spasms, shaking and weakness for 6 hours or so, very bad balance and drifting sideways when walking, speech and vision problems. I probably told you can't get in to see the neurologist until the end of December. Meanwhile I'm taking Neurontin which the Dr in the hospital prescribed after he found a lesion on my brain. Thank you Kimberly! My name is Terrie Miles, however my facebook name is Xena Jones. I use an alias because I'm paranoid. I play a lot of games. I will check out the website. Thank you. ~T


Posted by @sebley12, Nov 14, 2011

I added you to the group Xena, Now we can talk more privately too. We just had our last group meeting for the yr 2011. We will resume in March of 2012. But the FB group will continue as always to create new and improved information on Scleroderma & Autoimmune diseases. I was also wondering if maybe you could go to an MS foundation in your area to get more answers on your symptoms as they also have information on MS Speacialist and where to go for more help. I hope you do get a chance to read my MS story as it may help you a lot!! I have posted it here on this site in Mayo Clinic.
You may have experienced tremors instead of shakiness and you also need to find out if you have any leisons on your spinal cord as I have 4 on mine. 29 in my brain so please find a very good Doctor and most importantly one who will take his time with you as well. Please let me know how things are going with you! xoxo


Posted by @doedoe, Dec 1, 2012

Gosh, Terrie, sorry u r having to go thru so much but Dec is here and I hope you have a MRI, which would have shown all of my problems after much pain & suffering and many drs. I had terrible vertigo and went to ENT dr. verified vertigo and said I had to learn to live with it. 12 yrs. and episodes got worse to visiual problems, sparkling lights, giant fuzzy zig zags. unbearable headaches ., joint aches. I was slim, did not smoke or drink. walked 5 miles per day . I could not get a dr. to listen. only valium for sleep til vertigo passed. then right side of my face & body began to get electrical shocks when I sneezed or coughed. I had the flu for abt. 3 weeks. these shocks hurt so bad I could hardley stand for my clothes to touch me. fingers burned if they touched so I wore a glove on my right hand. In may of 2004 I awoke with a numb face and curled right hand. dr. sent me to ER to rule out a stroke. heart fine- blood pressure up and dizzy. back home with stinging & burning terrible cough still there months after the flu symptons. I finally went back to my primary care giver and crying & upset demanded tht she find out why I was hurting so bad with joint pain all over and bad headache in the back of my head, vertigo still going on and nauesa and very elevated blood pressure and bad balance. she sent me for and MRI and said might be week or two to get neuro dr. to "read " it. well the next morning she called to say the neurologist needed to see me on Monday. this was fri. when she called. said I had a serious brain problem. see I kept begging 5 drs. to help me. .I was shocked to hear what she had to say. even she said, well it is serious and even I can't explain it to you like the neuro can. But you have a 4th ventricle that shld have closed when your mother was 23 weeks preg. with you. I laughed and said, " I thought I was a perfect baby - now at 54 yrs old u say I'm. not? " this is why you have vertigo- your ceberal fluid is not functioning properly. this brain fluid found a tiny cavity going to your spinal cord and has make a 12 in. syrnix (cyst with sack of fluid) and you have a swollen chairi or brain tonsil which is malformed and pushing on your brain stem causing all of this stinging , shocking sensation. plus coughing so hard you have ruptured a membrane by your brain stem. your condition is diagonsed as syringomyelia with chari malformation. now how do I get this fixed or am I a "goner". she answered that she knew I would have to have brain surgery but needed to talk with neuro. whoo hoo that was a long week end. was sent to UT at Dallas to hospital Zale Lipshey for 9 hr. surgery 10 day hospital stay. can't fix right side damage cause we waited too long, but surgery would stop it from going to left side. so now I am stuck with being om dosanlility and in pain all the time. You have to MAKE some dr. listen to you. good luck & God bless


Posted by @cosmic, Jan 28, 2012

Where do I find your story? I am interested in reading it. Thank you.


Posted by @sebley12, Jan 30, 2012

I wrote it here for the social media contest. I am trying to find it. I also hope to here your story as well. I will continue looking. Talk later. xoxo

kristie likes this

Posted by @cosmic, Feb 9, 2012

I looked for quite a while and couldn't find it, please let me know when you do and vice verse! 😉


Posted by @sebley12, Feb 10, 2012

My story begins in the year 1978. I woke up 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.
A week goes by and I’m getting worse, I have red raised nodules on the shins of my legs 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 2 weeks of horrific pain, I’m finally carried in by my father and again admitted to hospital. The doctors tell my parents that they think there may be fluid in my ankles I will never walk again. But there was no fluid. I spent a week in the hospital only to have them discharge me with a diagnosis of Sarcoidosis or Erythema Nodosum. I spent 6 months in a wheelchair, was receiving steroid injections in my ankles and taking liquid painkillers just to be able to walk. 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 that I had was severe tremors. The nurse said it was normal after a C-section. I didn’t agree, as it was uncontrollable.
Finally my husband and I left the Hospital and took our baby home. Two nights later 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.
The next day, I literally woke up feeling like I only had a head in the bed!! I could not feel my body parts and I had no control of their movements. Today, I have learned that what I had experienced has a name and that is “PROPRIOCEPTION”
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 paralyzed and I could not respond to any of the doctor’s commands. I simply did not know how to respond. After being admitted and many tests, and 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 responding reflex, he said I was fine, yet I still could not see correctly.
My vision finally did come back as tunnel and “mirror like” vision. I was discharged with 1mg of prescription Ativan 3x as it calmed the tremors.

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 MRI’s only for him to read as they all stated that I had MS on 4 different MRI’s. In June of 2001, I was told I had a secondary disease diagnosis called Multiple Sclerosis. I had to go to speech and cognitive therapy for almost 3 years and I had to be detoxed from a medication that I was now addicted too. So with having Sarcoidosis and Erythema Nodosum and Optic Neuritis, and Lupus as well as Multiple Sclerosis along with other Autoimmune Related Diseases,
I feel that my participation through the Social Media would be of great knowledge to the health care community, health costs, as well as educating doctor’s and nurses that there are a number of unnecessary tests, procedures and wrong diagnosis because the Professionals are unwilling to listen to the patient.

One doctor wrote a letter to my Psychiatrist that he spent over an hour counseling me on my complaints.
I would hope that I could help the Social Media to learn 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.

I now am a leader of a support group for “Scleroderma and other Autoimmune Related Diseases Forum” via; face book. I post the meetings each month on this site and research updates for people to read about. I am an advocate for AARDA.ORG and Lewy body dementia as well as a caregiver.

What I really hope to learn from the Social Media is that we as patients, can teach doctors and patients to work together as a team.

Warm Regards,
Mrs. Kimberly Radomski

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Posted by @xena36, Mar 24, 2012

My sister has advanced MS and Lupus anti-coagulant, other sister has systemic lupus and I have had 2 major strokes and on large dose of coumadin due to Lupus anti-coagulant. Both parents were healthy and no other siblings. New to this post.


Posted by @uptopart, Apr 19, 2012

Hi, could you please help, comment on what; would cause these type of health problems: Pelvic Pains, HTN, Lost of Mobility, Sharp Pains(right arm), DVT/Blood Clot, Emotional Trauma, PTSD, Headaches(one massive), Latose, Foods, Drug Intolerance, TIA's, Mini Strokes, or Brain Attacks/Injuries!


Posted by @uptopart, Apr 19, 2012

Please reach out to me! You could, may help solve, bring closure, and give me answers; that I had been searching for two half years now! Now my health is at the center of legal matters! Too much invadation, violation of health/civil rights, extreme neglect, harm, and not enough of compassion, respect, precise, adequate, swift, decisive medical attention!


Posted by @lisaa, May 23, 2012

sebley12, please add me to your group......lisaA


Posted by @kristie1, Jul 20, 2012

I would like to join the group i am 35 almost 36 and i have MS just got it not long ago and would like to know how to cope with the illness. Thankyou. Christine n.


Posted by @julzzdh44, Dec 1, 2012

ireplying would be very interested in this group and the fb group. I was just diagnosed with ms after years of problems. I too have 3 MRIs 2006 2010and 2012 that show ms. My neurologist is waiting on my 2003 MRI when I had viral meningitis. I also have 2 herniated discs c 4 through c 6 and one in s1 that are impinging my spine. The pain sparked a visit to pain management clinic and when they looked at my MRIs they sent me to a neurosurgeon who sent me to a neurologist who diagnosed me. I'm scared and overwhelmed and looking for support. I have been going to dr with many complaints for so long. I'm angry that with multiple Brian MRIs no one ever said hey something is off here. Many times I was treated like a nuisance. I have this MS hug feeling often which has prompted many cardiac work ups. One nurse just said look nothing is wrong with you you just need to learn to relax! That just made me panic more. I'm so disappointed in healthcare but hopeful I've found some helpful physicians, now I'm seeking. Support community.

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