Potential misdiagnosis - scared

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WorriedUCer
Regular Member


Date Joined Jul 2014
Total Posts : 354
   Posted 6/4/2018 4:26 AM (GMT -6)   
Hi everyone,
I am a 35 y. o female who first developed neurological symptoms approximately 6 years ago. It started when I came home from work one day, had a shower, and was overcome with tiredness. I lay down on the couch and my entire vision went, I could barely see, and had right sided facial drooping. My partner took me to hospital and it resolved in the waiting room. They told me to come back if it ever happened again. From that day onwards, I had varying degrees of dizziness as my only symptom. Four years ago, I went out one night and hit the alcohol pretty hard. The next day I had extreme dizziness, couldn’t get out of bed the entire day, and when I stood up to go to the bathroom, I had a stroke and fell back down onto the bed. My entire right side went completely numb and I was taken to hospital. I had to learn to walk again, feed myself etc. The doctors didn’t know why it happened but found elevated levels of antiphospholupid syndrome. I was put on Clexane and my dizziness resolved. However, now four years later, my dizziness has returned despite Clexane and I am scared that I was misdiagnosed, and now I’m worried it is MS. I know I will need to go to see a neurologist and hopefully get an MRI, but I was hoping to see whether other people had similar presentations before their diagnosis, specifically the dizziness.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 6/7/2018 12:32 AM (GMT -6)   
My presenting symptom was vertigo. However it did not come on suddenly like a stroke. It came on gradually over a few (3-4) weeks. Eventually I was hospitalized due to being so dizzy I couldn’t walk. Interestingly, I was initially diagnosed with a cerebellar stroke. However, the neurologist who diagnosed me rescinded that diagnosis a few weeks later when I had a follow up MRI. I had no numbness and in fact had no other symptoms besides the severe vertigo and dizziness.

My neurologist sent me to UCLA MS center for a second opinion. I had yet another MRI (brain, cervical and thoracic spine) evoked potentials, blood work, a lumbar puncture, and of course a very thorough neurological exam of my reflexes and responses. It was confirmed MS at that time.
Diagnosed with MS July 2006, Breast cancer 2017

I have no lesions on my soul and so I live with no limits.

WorriedUCer
Regular Member


Date Joined Jul 2014
Total Posts : 354
   Posted 6/10/2018 12:30 AM (GMT -6)   
Hi Gretchen1,
Thank you for your response. Like I said, after that initial spell, I had dizziness for months, every day, but fluctuated in severity throughout the day. It’s not vertigo, as apparently the room spins with vertigo, whereas mine is more of a constant lightheadedness that drives me crazy and makes it impossible to think straight. It’s also interesting that they diagnosed yours as a cerebellar stroke as I thought they looked quite different on MRI so took them at their diagnosis. It’s just now that the return of dizziness despite anticiagulation has me questioning their initial diagnosis. I guess I wanted to know everyone’s symptoms on here, how they presented, if they had a few weeks of symptoms and then complete resolution in between, what constitutes a flare, is the dizziness permanent etc. Interestingly my symptoms first appeared the exact same day I had a fecal transplant from a new donor for ulcerative colitis, so I suspect that MS occurs as a reaction to a gut infection, at least in my case.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3571
   Posted 6/10/2018 5:54 PM (GMT -6)   
For most people who have MS, complete resolution of symptoms between fares is rare. Most have residual symptoms they have to manage. These symptoms are related to brain or spinal cord damage caused by demylenation.

Many report that MS symptoms developed after an infection of some sort.
Diagnosed with MS July 2006, Breast cancer 2017

I have no lesions on my soul and so I live with no limits.

Lendi
Regular Member


Date Joined Mar 2018
Total Posts : 336
   Posted 6/18/2018 3:01 PM (GMT -6)   
I'm glad you got a DX even if it wasn't what you wanted to hear. Now, you can have needed medication and find out what helps you and what doesn't. My hopes are that you will have an easy time of it with the proper meds.

I was DX with MS for 7 years or so. I went to the neurologist because of severe headaches which nothing worked on. He did an MRI, sleep study all the evokes 11 viols of blood and on and on. He put me on meds although I tended to get worse rather than better. Then, he moved out of the area.

The next, and next and...said it wasn't MS because the lesions are only on my brain. They also say I have neurological problems but none have a clue why. I continue to get lesions although they aren't real big so I'm in the middle of nowhere.

People would say they had heard I didn't have MS afterall then congrat. me. My thoughts are that whether I'm given the name or not doesn't matter all that much because I still have the same symptoms, including vertigo/dizziness. I'm always bruised because I can't seem to quit running into things. But, I admit that it sure was easier telling people I had MS rather than I don't know.

Rosheen
New Member


Date Joined Sep 2018
Total Posts : 5
   Posted 9/18/2018 2:20 PM (GMT -6)   
Dear Worried,

Many people's symptoms begin with vision symtoms and fatigue. That said - the drooping of the face is not common. That could be a serious sign of stroke or some other neuro condition. I hope you did follow up with a neurologist at a reputable clinic or hospital. An MRI and other testing may have given you answers. If you do not get an answer after about 5-6 months leave and spend your $ on a second opinion. We need to be more proactive as patients and hold clinicians feet to the fire as far as our $ go. We are consumers, we deserve the best work up available. Any delay in the work up may affect your career, home life, social life, etc. So getting the best is critical to your well being. Being treated as if you are a product rather than a person isn't healing.

Rosheen
New Member


Date Joined Sep 2018
Total Posts : 5
   Posted 9/18/2018 2:36 PM (GMT -6)   
Lendi,

I was told the same thing for years. A very long time ago, my mother wrote an inscription in a book she gifted me. That inscription was, "Wishing you the grace to persevere." I wish you the same. Find a neurologist who has more emphasis on the clinical manifestation of the disease. A neurologist who is worth his/his salt doesn't just rely on the MRI. All diagnoses of MS are made with both MRI, Evoke Potentials, sometimes a spinal tap and most importantly the clinical exam over time. There is a stage of diagnosis that allows medicine despite the uncertain diagnosis - any clinically significant disease process, charted over a year, should indicate whether MS meds would be of benefit to you. In the meantime, don't accept any wooden nickels!
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