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markpnw

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In July 2009, I posted the following:

"I have been reading this forum for about two months now and am so impressed by the support and information provided by the members. I am hoping to learn more and share my own experiences now as a member. I aoplogize in advance of for the long post but it is my first time on the forum and I want to provide some background before asking questions.

19 months ago (December 2007) I experienced acute symptoms of blurry vision, fatigue, pins/needles on head/hands/feet, headaches, brain fog, and ear ringing. The vision improved, on its own, within a month. The pins/needles and headaches improved within 2 months. I had negative brain and cervicle MRIs and blood tests galore (all negative). The brain fog, in-and-out fatigue, general vision (ability to always focus) issues persisted. 6 months into not feeling well I had was tested for metals by a naturopath and urine showed elevated levels of mercury. I chelated for 2 months and my mercury was lowered almost to normal. Blood tests also showed I had a high ANA Titer which shows that I may have an autoimmune disease. After countless blood tests I have reynaulds and may end up having limited scleroderma but at this point I do not.

In Februaury 2009 I suddenly experienced extreme stiffness/pain in my hands. X-rays, sedimentation rate, etc. showed no inflammation or arthritis. The pain went away after a few weeks. In March 2009 I experienced hip pain which limited the ability to walk or stand for very long. My hips have improved but are still sore and I have problems standing or walking for very long without pain.

In April 2009 I started to experience muscle pain/subjective weakness bi-laterally in feet, hands, ankles, lower arms, and shoulders shoulders. Within in a couple of days the pain/ weakness appears to be mostly on my right side (foot, calf, arm, hand). My right foot, ankle, hand feels stiff/tight and it is painful to grip anything for more than a couple of minutes. By the end of April fasiculations started in my right foot and has now moved into right arm, right calf, left foot, left calf, chin, and hands. I also get occasional sharp pains in limbs and it hurts to smile/laugh do to mild jaw pain. I had a clean EMG and NCV test one month after feeling the fasiculations. I am told that I have no clinical weakness, although I feel much weaker than usual. The Neuros and Rheumatologist have no explanation have thought it may be a neuropathy, glycogen storage disease, or perhaps a very early sign of a MND. I have poured over the internet and have seen countless doctors. My symptoms seem to be getting worse and progressing quickly over the past three months."


I received several responses from helpful members :razz: and continued to seek medical advice and live my life. Since this time I have been to the Mayo (no diagnosis) and have seen 3-4 other nuerologists. I have had countless tests - EMG/NCV, blood, urine, MRI, even glycogen storage disease analyses. I have gone on diets (no gluten or aspertame); acupuncture, energy healing, massage, etc. The various specialists have said that something "autoimmune" is causing these symptoms and I have reynaud's syndrome. The only remarkable finding has been a muscle biopsy in the upper right calf which stated "mild denervenation atrophy". The neuromuscular neurologist has said not to worry because the results showed no myopathy and this result is often seen in the calf at my age (41). That was in June 2010.

In the past month, however, the muscle symptoms have progressed. My right calf has visible signs of atrophy confirmed by a neurologist, I have subjective weakness in my right calf/foot and right hand. I also have subjective weakness, but not as pronounced, in my left hand and left foot. I also have numb feeling in my lips/mouth. I still have fasciculations in hands/feet and periodically in other locations (head, thighs, butt). I also still have sensory symptoms - sharp, dull, achy - in feet/hands. These sensory symptoms occur almost everyday but have morphed over the past year or so.

Overall, I am much worse-off than I was when I posted in July 2009. I have a very difficult time with fatigue. I pretty much can not work in the yard, hike, bike, or work-out. Playing guitar is a struggle. I have another EMG scheduled later this month and am strating to really believe I have ALS again.:-(

I wondering if others have had this type of progression before being Dx with ALS? Any words of wisdom?
 
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