Hello pknw, you might want to check out website siboinfo.com…there is all sorts of info on there.
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Hello Tuckerdoodle, I feel for you and what you’re going through. I also have been going through all of your problems starting way back when. It got so my poor, normally very understanding, husband said “maybe you should do an internet search on hypochondria”; until I collapsed at a restaurant sitting across from him he noticed my eyeballs racing horizontally back and forth and rushed me to the ER. The ER doctor ordered a brain MRI and said I should see a neurologist ASAP. It took 6 mos. for a Doctor to say you have ataxia – get a single point can with triangular base and make it your new best friend. Two months ago, I got up out of bed at 3 am on a Sunday and went online and opened up the Mayo website and requested an appointment I heard back from them the following day, completed a medical history form; and, a week later they set me up as a client with complex medical issues. I’ll be going to Mayo in Rochester in August and pray they can help me. So yes, Tuckerdoodle, I understand your frustration and pray all goes well for you.
I have had this problem for several years in my right eye only and has gotten progressively worse. Now any unexpected action that comes into my right peripheral vision causing nystagmus and I collapse or fall to the left. A North Dakota internist put me on LDN (low dose naltrexone) several weeks at 4.5 mg recently increased to 9mg. This has improved by not eliminated my problem. I am scheduled for appt with Mayo’s neurology dept in August hoping they can help with balance issues, etc.
Hi Teresa, no therapy at all for my conditions. Only had pt 10 months after my lumbar laminectomy with mech fusion – I guessed better late than never. As I mentioned in a previous post the doctors here in sw ND are behind the times or only allowed 15 minute consults.
You are quite welcome Teresa and yes there were other symptoms and I don’t mind sharing if it helps others. First of all, I lost my Dad in 2004/5 due to Alzheimer’s Disease, which caused my depression and put a fear into me. I have had physical problems for a decade or more. The first one that appeared was loss of feeling in left leg (they thought it was due to spinal block. That a nerve was nicked). I eventually got some feeling back but it was like my brain forgot who to walk. As a teen I excelled in sports, favorite piece of equipment in gym was the balance bean; but, 10 yrs ago I couldn’t walk a straight line kept tripping over nothing. Misplacing items because I was putting them back in the wrong place e.g. ice cream in refrigerator. Then I couldn’t play Bridge or any other card game. I thought Wow I’m going to get Alzheimer’s. My psychologist (for depression) referred me to another doctor for a 3 days of testing. I maxed the mental and hand-eye coordination; physically was diagnosed with low levels of sodium. Then the MRI, radiologist reported CPM and both he and the psychiatrist told me to get to my family doctor and a neurologist. My original psychologist said what do you expect, “you are a recoveringt alcoholic (16 yrs). You damaged your brain.” Needless to say I stopped seeing him. Family doctor treated me for low sodium condition.
Between 2009 and 2016 physically/mentally got worse. I started choking on food and liquids sometimes to the point of vomiting. Had to quit bowling as left arm as well as leg got worse; also, my husband noticed I would stop breathing for seconds at a time and said Gail breathe. My guts were a mess and then the horrific bowel incontinence. Falls caused broken bones. Started having troubles going down and up stairs. I was treated diagnosed with syncope although I assured the doctors I don’t remember any type of fainting. Went to cardiologist for arrhythmia and low blood pressure….he mapped my heart and performed cardiac ablation. They’re thought was low blood pressure and ventricular arrythmia hitting simultaneously caused the falls or collapsing to the left.. Next I told my husband that we had to switch kitchen chairs to my right side peripheral vision couldn’t see trees waving in the wind or cars going down the street because it was making me dizzy which led to my collapse to the left while sitting. Wait staff and Bruce noticed my eyes went wonkers fluttering horizontally off to ER then another brain MRI which noted original CPM and now EPM. I’m hoping all remains at least steady with no further medical deterioration so that Mayo can help me.
I’m having a dickens of a time with my central nervous system – brain fog, etc. so in 2009 went thru 3-day battery of testing for alzheimer’s. Nope, still smarty-pants and medically fit however brain MRI radiologist report indicated I have CPM & see neurologist asap. Neurologist said don’t worry about it & said increase salt intake. August 2016 went to ER as I collapsed to the left while sitting in restaurant. ER doctor said I had nystagmus and I had another MRI, the very same radiologist said in addition CPM I now have extra pontine spots on the brain. Back to a different neurologist at a major PPO here in North Dakota. They refused to look at the disc I hand-carried nor the radiologist’s report because they did not order MRI. All they did was order EEG (negative) & put me on some drug that didn’t work. Eyes going nuts, falling down/breaking bones (3 so far), can’t swallow liquids without choking. Anyways the 3rd & last neurologist (still won’t look at last MRI, nor report) indicated I have ataxia. To make a single point cane with triangular base my new BFF and ordered physical therapy for the nystagmus, still having problems. I’m sorry for this long post. I know I’ll eventually find out what the heck is going on as I am going to Mayo this August.