I have a patient I have been advocating for since September. I was hired by the family. Joe (not real name) 44 yr old started having dizziness and balance problems 2.5 years ago. Fast forward to NOW. Joe is in a wheelchair with extreme dizziness and balance problems ( cerebellar related), decreased hearing, constant nausea, visual problems which include severe abnormal eye movements, double vision, ataxia, intermittent headaches, decreased feeling in left hand and muscle weakness. He has been to several neurologists in his local area and in a major city. Every lab and radiological test has been preformed. Nothing is positive. The last neurologist was hopeful and ruled out paraneoplastic syndrome and Multiple Sclerosis. Joe recently spent 10 days in the hospital receiving plasmapheresis treatments with no change. Internet , medline and NIH searches have been done. The doctors are now calling it idiopathic. Meaning no diagnosis, no available treatment, and no hope. Joe was an active husband and father, worked to provide for his family and now spends his days in a wheelchair hoping the day won’t be too bad.
Need Help: An undiagnosed neurological disease
There was so much hope with the last neurologist who admitted he was stumped. He was the first one to try anything. However, where to now? I am searching for suggestions as to options, centers, and any known wild and crazy neurologists, neurophysiologists, researchers who like to think outside the box nationally and internationally. What is experimental out there and where to look? Any ideas?
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Sounds like my brother….father/husband/avid outdoorsman. It’s been 2 yrs this Feb. He’s had everything done to him. He’s had the best doctors everywhere…..went to Mayo clinic for 12 days even. No one has a clue. Now trying to get into Center for Undiagnosed Diseases. Definitely does not look hopeful at all. He is wheelchair bound as well, has the nystagmus, can barely stand or hold himself up, very difficult to speak and swallow, starting to loss use of hands, etc. They’ve tried all kinds of treatments, etc. He responds to nothing.
Very devastating scenario. The only thing we know for sure is that he is a Saint and has inspired us all.
Best of Luck to you. CE
My husband, 40-year-old has similar symptoms. Just started about 3 weeks ago. He has balance problems, slurred speech, memory loss, double vision. These symptoms seem to come and go, although never really gone most of the time. He is now vomiting all the time and has been in the hospital for over a week this time. All tests are normal but his speech and balance seem to be getting worse as does his mental state. If you find help, please let me know!
The diagnosis was paraneoplastic syndrome. This syndrome occurs when a rogue cancer cell attacks the cerebellum. The immune system then mounts a response against the cells and doesn’t turn off. I finally got it diagnosed at Mayo Clinic in Rochester, Minnesota, by Dr Sean Pittock. He is one of the few doctors who is cutting edge with this illness. Mayo has specific tests for neuroimmune. If he has this, there is treatment but it needs to be started ASAP in order not to have permanent disabilities. I assume you have had an MRI and nothing is showing up. Your neurologist can contact Mayo for advise. Please help me know if you need assistance at Mayo or your neurologist.
Sounds similar to my first year. The combination of symptoms can be far more frustrating than any individual one. By the time I recieved any type of help at all it was determined it was basically irreversible. The situation you are in is hard, no question. Attitude will mean everything as you negotiate the mazes to get help. You will need to be the best of friends now more than ever. You will both have periods of anger and frustration, work to keep it from spilling over onto each other and when it does, and yes sometimes it will, let it pass and let it go. Don’t guilt each other or require apologies for every little thing. Find as much humor in as many things, yes even the disease when you cansymptoms, as possible. I can make a milk shake just by holding it in my left hand Contact me through Hari if I can lend any moral support.
The combination of symptoms can be far more frustrating than any individual one. By the time I recieved any type of help at all it was determined it was basically irreversible. The situation you are in is hard, no question. Attitude will mean everything as you negotiate the mazes to get help. You will need to be the best of friends now more than ever. You will both have periods of anger and frustration, work to keep it from spilling over onto each other and when it does, and yes sometimes it will, let it pass and let it go. Don’t guilt each other or require apologies for every little thing. Find as much humor in as many things, yes even the disease when you cansymptoms, as possible. I can make a milk shake just by holding it in my left hand
Contact me through Hari if I can lend any moral support.