Reply To: Different EMG results?
I have found that getting doctor’s to just pay attention to be the hardest part. My journey has been a long one. I was diagnosed with Multiple Sclerosus in 1993, but my problems go back to 1962 when I developed pneumonia at the age of 8 and my only symptom was severe leg pain and not being able to walk very well. After seeing the top ortho doc – who was later President of the AMA – my mom took me to the GP who delivered me, and he came up,with the pneumonia diagnosis.
In 1969, I had another bout of extreme weakness that kept me out of school for a month. In 1974, I saw my first neurologist because of weakness, numbness and pain in my left leg. Checked for Diabetes, but again, blown off.
So in 1991, I,saw a neuro who tested for Myesthenia Gravis, but the insurance start balking at paying for further tests. The neuro suggested a change of insurance to an HMO that would pat better but less options. That led to the MS diagnosis in 1993.
I had been doing fairly well until around 2001, when I started having balance issues. I went to using a cane, to using a walker.
I finally had to retire from work as a computer technician July 2015, as not only was my mobility impaired, but my eyesights was rapidly disappearing. My last outing was to a retina specialist to see if I could be cleared for cataract surgery with having severe retinal bleeding. Got home from tha appointment, and was horribly sick with intestinal distress. By a week later, I wound up in the hospital Emergency Room with what I thought was a build on my rear end. Turned out to be necrotising cellulitis and I was admitted to the wound care unt.
The day after I was admitted, they got me out of bed and I was able to walk around the hospital with a walker. But they started filling me with drugs, including four IV’s at once, high blood pressure drugs which ,add me so dizzy, I totally lost the ability to even sit up, but much less walk.
I had two surgeries for the skin infection, and they removed the worse of my cataracts over the next five weeks. But I could not get them to do a single test as to why I could not walk anymore.
So about a week after my skin graft, I was shipped of the a nursing home to recover, me screaming all the way out about the walking issue.
After four weeks in the nursing home, my skin graft was declared healed and my insurance demanded I leave, but the facility doctor said it would be dangerous for me to leave. The insurance said they didn’t care, they were not going to pay for me to stay and theywouldn’t help in getting any further treatment, as they assumed it was the pre-existing MS causing the issue.
So I paid out of my pocket for an extra 3 weeks – about $5000 – to get some extra help in walking, and I finally headed home December 12, 2015. That lasted for about five hours when I couldn’t get up to got to the bathroom, my housemate called the nursing facility and they suggested I go to the ER for a new evaluation.
We called an ambulance, and they called the paramedics, who insisted that I prove I couldn’t walk. I agreed ro stand and try warning them not to let go but they did, shattering my right ankle and breaking my tibia. The hospital they took me to asked a neuro to see me. MRIs were ordered and he said I didn’t have MS, but I had something.
Again, he was not allowed by the insurance to find out what was going on, so I was shipped off to another nursing home with a suggested neuro consult when the leg was healed. I didn’t get to see an neuro until August 2016. Delays in approving tests got me the CIDP diagnosis the Tuesday after Thanksgiving.
The battle continues with getting treatment. Got five days on IVig at the end of Marc, and I am on my third round of steroids, having put on over 50 pounds. Still in nursing home on my own dime, which is $7500 per month, since I still can’t walk. Money is running out fast.
On August 14, I got to the UC Irvine Neuromuscular Center for a second opinion requested by my neuro. That will determine if I can afford to keep alive.