I need moral support......
My story is this. Was living a wonderful life, raising two wonderful kids. Working and going to school full time while going to the gym daily. Made my kids my 1st priority by being involved in all school activities while maintains my home, house projects ect. One winter in 2004 had a gallbladder surgery and a new job waiting for me while I recovered. Couple of months after working my life changed drastically. Started what we though was a stomach flu, I ended up getting this 3xs in a row. Woke up one morning at 1am had to go to the bathroom, could not move my legs, sat there crying, confused and scared. My daughter heard me at 5 am and helped me out of bed, dragged me to the bathroom. Was able to get my legs working and showered and went to work. Scared and confused to what just happened. Noticed my legs started shaking while walking up the stairs at work, started falling down the stairs. Sharp pain and severe pain in both legs daily. Started from the back down mainly on my left side. Onto the primary, back X-Ray showed cloudiness which he treated me with prednisone for 6 days. No relief until the 6 th and last day of treatment. Then onto the back doctor, he suggested MS. Long story short I have had every test from A-Z everything possible ruled out. Yrs of same testing along with MRIs. Showed a couple of lesions unspecified so MS was ruled out. I have had muscle contracting in both legs, giving so many diagnoses and have taken every drug prescribed, nothing worked. Started noticing no more hot showers, cool showers. Sensitive to hot and cold. Winters and extreme heat kills me. I am in constant leg pain. Had a neurophysiological testing yrs later showed all impairments, ruled out Alzheimer's, Parkinson's, dementia but still could not take of MS from the table. 10 yrs later my firm, fit body dwindled to now nothing. Lost all muscle tone. Have spasticity in both legs, now arms are shaky. Oh cannot forget the explosive uncontrolled bowel movement as well as tons and tons on UTIs. Latest surgery was to extend the bladder due to not being able to stop the leakage and the pain associated with going. That really didn't do much as problems still are here.
Went to a different location after seeing #8 neurologist 8 hours away, 2nd time traveling out of state for new neurologists. This past April after having neck, spinal and head MRI more lesions appeared. Was rushed over to the neurologist right after the test. While taking the test which took 2 1/2 hrs my back. On spinal cord was burning, felt on fire. Had to keep lifting my back because of this sensation. After the test the tech checked my back after complaining and was cold to the touch. No redness, nothing. The neurologist looked at the MRI and stated I had spasticity. Go see another RA to rule out any bone or joint problems. All were negative..AGAIN.
My primary just received the results from the radiologist and said, was consistent (and underlined) with MS. After finding this out I was furious. Emailed the neurologist and asked if he over looked this report. His response was one of the older test, unspecified and that my primary is misunderstanding this report. Really? Wtf....seriously??? Wow...
I have had 2 weird episodes that really scared me, the 1 st one was I took a shower, went to my therapist which by the way wipes me out. Came home and passed out. Woke up in the middle of the night with severe pain in both hips, both legs, butt and spine. Pain was so bad I couldn't sleep. The following morning I could not stand let alone walk. This lasted 2 days. This also reminded me of this feeling I had back in 2004. The following next day pain still in hips, legs, butt and now moving up my spine to my upper back. Ok now I am really scared. Called my primary but was not there, the on call doc did not know me nor my case, she told me it was to late to be seen, if not better by Monday to come in. Of course it cleared up over the weekend. Lasted 5 long days. The next month I was playing Xbox and got sudden pain in my right arm from neck down along with numbness, tingly and a sharp pain. Then my right side of face became tingly, jaw pain and numbness. Ok 1st thing I thought of was blood pressure issues. Took blood pressure, it was sky high. 2nd reading went down a little but still high. Woke my daughter up to see if this digital blood pressure was acting up. Apparently not. Her being now in the medical field said we are going to the ER. I refused because I didn't have chest pain, sweats and whatnot. We did call my primary @ 3am without a returned phone call, she was out of town, the on call doc never called back. The arm pain was still there the next day so I called again, now getting worried. The following day my primary did call back and set me up with a cardiologist. I knew in my heart all testing would come out normal...which all did. I knew it was my brain given off all these wrong signals. The cardiologist after doing a round of every test possible said this is a neuro problem. Again I looked like a fool. After meeting with my primary and after being diagnosed with TM 2 years prior we both agreed I was misdiagnosed again. That's when she brought it to my attention this sounds more like ms. She told me to read up on this and logged these past two odd episodes. What I did see, both lasted more than 24 hrs, and 30 days apart. Now I am getting really scared. Oh forgot the most important thing when that arm pain thing was going on I had this annoying head ache that was there for 4 days, the day before the arm pain I was falling all over the place, falling over nothing, accused of drinking which I do not...the day of the arm pain the head ache got worse which led me to think this maybe a BP issue. The falling all over was weird an unexplained. Since these past two months of these episodes I keep having these days of falling over everything and nothing. After documenting these issues I am getting pretty scared of this 30 day mark...what will happen this month. I am to the point that I do not say anything anymore bc I am tired of being called crazy, or gees we never heard of that.
Who do I believe the radiologist or the neurologist....is this ms, are these symptoms....I need help....please anyone who has been living with this disease that I know nothing about....HELP! Please HELP
I wanted to thank everyone that I had reached out to for taking the time out of your life, time for reading my profile. My heart goes out to all of you for living with this horrible illness. I really hate to see people suffer. God bless you all and know that you can really make a big difference in other peoples life, like mine.
Thank you again.....I hope to connect with some very special people.