Andersk2
Member
- Joined
- Apr 4, 2016
- Messages
- 27
- Reason
- DX MND
- Diagnosis
- 04/2016
- Country
- Us
- State
- Oh
- City
- East Ohio
January 2nd 2014 I suffered an episode where I suddenly became very ill, shaky, my vision was black and I was disoriented for a period of time. I was taken to the ER and was hospitalized for four days. At that time I had almost any and every test imaginable ran and was subsequently released with a DX of Conversion disorder. My primary physicia, knowing me and my history completely disagreed and was very concerned and began to track my health.
These episodes continued almost daily and up to 20 times per day. My physiatrist felt they have been either seizure of migraine related and put me on topomax which did help with the daily spells. However, I continued to have regular quirks and jerks and muscle spasms. These continued to build into complete body jerks along with fasciculations. Additionally, I was progressively losing muscle strength on the left side.
Again, I was given a complete work over. This time by the Cleveland clinic. I have had 3 MRIs, 2CAT scans, 3 EEGs,extensive lab work, been to the migraine clinic, epilepsy center, vascular center, autoimmune center, and MS center. The one thing the all agree on is that the symptoms and progressive weakness and now atrophy exist, but nothing is being revealed. So I came home for 8 months and dealer with it. Until the fasciculations became so significant the were consuming me daily. Additionally, I found myself tripping regularly over my left foot, beginning to slur my speech and having difficulty with everyday task with my left hand. So my primary sent me to a local neurologist just to monitor me.
She immediately found several things. Eye nystagmus, blephospasms, fasciculations, hyperflexions of the left foot, extensive left sided weakness, and atrophy in my left calf and hand. So nowhere I am going through my third round of extensive testing. 24 vials of blood. 24 hour EEG, upper and lower EMG. Her word exactly "this is classic ALS except there are too many other symptoms, so maybe it's something else. We need to look one more time."
I have never wanted to be diagnosed with MS, Lupus, cancer, sarcoidosis, addisons, anything other than this beast so badly before in my life. But I am preparing myself for the inevitable as that my chiropractor, PT, OT, and family physician have all prepared me to do so. Right now we are not telling my family, only my husband and I know. We will live the rest of our lives fully.
These episodes continued almost daily and up to 20 times per day. My physiatrist felt they have been either seizure of migraine related and put me on topomax which did help with the daily spells. However, I continued to have regular quirks and jerks and muscle spasms. These continued to build into complete body jerks along with fasciculations. Additionally, I was progressively losing muscle strength on the left side.
Again, I was given a complete work over. This time by the Cleveland clinic. I have had 3 MRIs, 2CAT scans, 3 EEGs,extensive lab work, been to the migraine clinic, epilepsy center, vascular center, autoimmune center, and MS center. The one thing the all agree on is that the symptoms and progressive weakness and now atrophy exist, but nothing is being revealed. So I came home for 8 months and dealer with it. Until the fasciculations became so significant the were consuming me daily. Additionally, I found myself tripping regularly over my left foot, beginning to slur my speech and having difficulty with everyday task with my left hand. So my primary sent me to a local neurologist just to monitor me.
She immediately found several things. Eye nystagmus, blephospasms, fasciculations, hyperflexions of the left foot, extensive left sided weakness, and atrophy in my left calf and hand. So nowhere I am going through my third round of extensive testing. 24 vials of blood. 24 hour EEG, upper and lower EMG. Her word exactly "this is classic ALS except there are too many other symptoms, so maybe it's something else. We need to look one more time."
I have never wanted to be diagnosed with MS, Lupus, cancer, sarcoidosis, addisons, anything other than this beast so badly before in my life. But I am preparing myself for the inevitable as that my chiropractor, PT, OT, and family physician have all prepared me to do so. Right now we are not telling my family, only my husband and I know. We will live the rest of our lives fully.
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