By Kelly McNamara Keymaster
How were you diagnosed with MS? Share here.
By Kelly McNamara Keymaster
How were you diagnosed with MS? Share here.
Numbness from the waist down was the symptom that at long last resulted in a referral to a neurologist. Blood tests and MRI’s were used to diagnose my MS.
Oh my goodness, that is a tough one. There were so many times when I felt like my legs were like concrete or if felt like I was trying to walk through snow that was up to my waist. Then, there would be times with tingling or numbness, dropping things more often, falling more often, so many different symptoms over the years. Kept telling the doctor the same symptoms I was going through over and over. Eventually, she sent me to an neurologist, who gave me an EMG, which was inconclusive. Finally, I got fed up with it and got a second opinion and went to another neurologist. That doctor knew right away that there was something wrong with me and sent me off for my first MRI. He was hoping that my husband was with me, but no, I was all alone. He showed me my MRI and there were white dots all over my brain and neck which he said was MS and I screamed and cried all the way home on the buses. I was so shocked and upset. I called my last surviving aunt and asked her if we had MS in the family and she said yes and said one of her daughters is in a wheelchair and she had some nephews that MS too. I was furious. My mother took that dirty secret to her grave.
Tell us about your experience?
Hi Carol, I am new to this discussion. My sister was diagnosed over 10 years ago but doesn’t have an lesions on her brain. I have seen her get worse and worse over the years because all the medicine she has been taking or the steroid treatments she was given are not working so they don’t know what she has. She has been to so many neurologists over the years they just don’t have any answers. They are not even sure its MS its like they given up on her. The last dr had her have a baclofen pump inserted near her belly. I feel so bad for her. I feel like she has lost hope. What if its not MS. She can barely drive anymore only short distances. I just feel lost for her.
Sooooo….. I am probably one of the oldest MS people on the planet. LOL I was diagnosed when I was 28 (but believe my symptoms began as a teen) and now am 69. My first serious symptom was retrobulbar neuritis which I developed while pregnant with my son. Thinking it was caused by my pregnancy I just chalked it up to that, but I began to worry when I still had visual issues after his birth. My eye doctor recognized it immediately, but only put me on Prednisone without saying much else. It wasn’t until my son was a year old and I had the neuritis return that he sent me to a neurologist. Since there were no MRIs way back then I was sent to the MS Treatment Center in Univ of Med and Dentistry of NJ and had a confirmed diagnosis by Dr. Cook.
He was a leading expert on MS at the time so I knew he was being truthful.
Jumping ahead to 1990 I finally had an MRI and was told I have 12 lesions on my brain, brainstem and upper spine. Joy. My journey with MS has been a long one and I am now tired of dealing with MyShadow; consequently, I am not as concerned for my symptoms as before. As to my life with MS, I have had relapsing/remitting most of my life, with cognitive issues my biggest problem – poor judgment, major disconnect between thought process and verbalization, making bad decisions, saying inappropriate things in a conversation, and etc. And of course, my MS gut, which has caused me much trouble over the years AND lack of coordination and balance has made my life interesting, if not frustrating. So, I realize My MS is not Your MS, but I would like to offer encouragement to those newly diagnosed that you can have a long life and the way to survive is to develop YOURSELF and have confidence. I like to think we were chosen for this horror because we are strong, inteligent people who face life head-on. To do otherwise defeats the purpose.
I couldn’t agree with you more.
@meandmyshadow I love that you mentioned develop yourself and have confidence. When first diagnosed I was scared and angry. When I was told I had MS I replied they were wrong because my back is straight. Yes I thought MS was scoliosis…I apologize for the misspelling. It took time to accept this and even more to learn I have MS it does not have me. It was and continues to be difficult at time but I learned how to live again,just a bit differently.
Earlier this year in January I had vision problems and L’hermittes sign shocking through my body. I went to my family doctor who after 3 Mri’s Of my back sent me to a neurology because I had a good amount of lesions on my upper spine and neck area. My neurologist had an MRI done if my brain to tell me my brain had a very good amount of lesions all over it and that I undoubtly has MS. He diagnosed me 3 months before my wedding in May. I was pretty scared since I am only 21 and getting ready for my wedding and now this is all I can think about. Luckily I’m currently symptom free that I’m aware of and currently doing infusions. Thanks.
after years of chasing an answer to my husband’s problems his neurologist did a spinal tap and a specialized eye test (cannot remember the name) which diagnosed his MS.
Hi I was diagnosed about 13 years ago.
I was stocking at grocery store and hit my left leg on a pallet. The next night I went in I had problems putting cans on the shelf. I had the hardest time judging the distance. As the night progressed I noticed the right leg dragged. I decided with my wealth of medical knowledge hitting the left leg affected the right leg.
As days went by I had problems walking. I decided it was stress. Things became serious when I went to a job interview and could not step on to the sidewalk. After the interview I was driving home and noticed I was having problems moving between the brake and accelerator. I went straight to urgent care
The urgent Care said I had a heart problem and recommended I see my PCP. I didn’t like that answer so went to another urgent care.
At the next urgent care my walking deteriorated and I could not move my right arm. After some tests, an ambulance took me to the emergency. One week in intensive care and I was sent to another hospital specializing in neurology. It was there I was diagnosed with MS.
Before ending I must share I am not a good patient. One day I will share that story
By Donna Steigleder Moderator
@charlynn Sounds like you literally stumbled into your diagnosis. What a frustrating and scary pathway to finding answers. So glad you found your way here and hope we can help you find answers quicker and easier then what you have experienced before. Looking forward to hearing your story one day.
Hey! So new to this website, and my diagnosis of RRMS. I was diagnosed in September of this year. Although my first ever episode (I’m aware of) happened a few weeks after I was attacked in March. My right foot went completely numb for 2 weeks In April to where I couldn’t work because it was so numb. I had an mri scan around a week after I went to my gp, who rang me the morning after my scan telling me I was now being investigated for ms. From that very phone call I knew, I had a gut feeling from then on that it was true. Then in Early September I had a relapse of altered sensations in both my arms that lasted around 10 days, my arms were very weak, almost like fireworks shooting down my arms. After thinking that was the worst it could get, I had another relapse recently after recovering from cold symptoms For around a week, to were I woke up one morning with such tightness in both my legs I was unable to get out of bed. The spasticity and stiffness was unbearable, a few weeks after I met my ms nurse for the first time (2 months early due to my legs). She suggested taking copaxone, Does anyone have any similar stories? I only know one other lady with SPMS who hasn’t had a relapse in a very long time.
By Janus Galante Moderator
So glad you found your way here. Please feel free to look around, explore, and don’t be shy to jump in on the conversations. We have a great community here.
So very sorry to hear of the stiffness, spasticity and numbness you’ve experienced though. Please know that you are not alone, many of us have gone through very similar things.
Below I’ve included a link for you that I hope will be informative as well as helpful.
If you have any questions please feel free to ask!
Again, a very warm welcome! Janus