January – I was at the end of my rope. On-again, off-again, on-again, the emotional roll-a-coaster was too much. I went back to Dr. Steier and asked him to do something. He asked if I wanted to see a Psychiatrist? I told him I didn’t think it was in my head, that the symptoms were real. I went to Dr. Kramer and asked him to do something. He scheduled an appointment to have what he called a "SPECT" scan done.
February – I had the Brain Perfusion SPECT Scan done on 3 February 2000.
The following are quoted from the results.
FINDINGS: There are small cortical (1) bilateral foci (2) of increased activity in the cerebellum. There is a well defined focus of intense activity in the region of the right calcarine (3) gyrus (4). There is a midline focus of intense activity that corresponds to a subcentimeter focus of hyperintense T2 signal in the left cingulate (5) gyrus on the MRI scan of 11/16/99.
IMPRESSION: Motor Cortex lesions can be seen on SPECT scan with Amyotrophic Lateral Sclerosis. Neither the MRI nor the SPECT scan show the typical pattern of periventricular findings that is usually seen with Multiple Sclerosis. I recommend repeating the brain MRI with and without contrast on a high field strength magnet.
(1) Relating to, or consisting of cortex. CORTEX: The outer part of an organ or body structure.
(2) Plural of focus i.e. more than one.
(3) Calcarine sulcus or fissure. Number 12 on this view.
(4) A convoluted ridge between anatomical grooves.
(5) Cingulate gyrus. Number 3 on this view.
PLAIN ENGLISH: They found ALS lesions in the Motor Cortex and whoever originally read the 11/16/99 MRI “missed” seeing the hyperintense T2 signal on the left side because it is so small (subcentimeter).
Mid-February – I thought a miracle had happened. My energy seemed up, the numbness/tingling had somewhat subsided, the tremor only happened when I got tired. I was able to walk 300-400 yards at a time. Although not all symptoms were gone I was noticeably better.
March – Towards the end of the month, it happened, all symptoms returned and this time with a vengeance. The numbness is more like a complete loss of feeling and from day-to-day, even hour-to-hour; it may show up anywhere. The tingling feels more like needles are being stabbed into my skin; again from day-to-day, even hour-to-hour, it may show up anywhere. The tremors are bilateral and get worse as I fatigue through the day. At times I can’t hold on to a drink without spilling it. I can’t walk 200 yards not only because both legs get totally exhausted, my hand can’t hold onto the cane due to forearm cramping. The muscles in my forearms/hands won’t allow me to keyboard for long periods; 10-15 minute intervals then break for 5-10 minutes. I can’t always carry on a conversation because I "forget" what we are talking about or can’t remember what word(s) I want to say.
April – For the past week or so I’ve noticed it is getting harder to hold my head upright. The neck muscles get fatigued and cramp. When I eat a meal the muscles in my tongue and throat cramp making it hard to swallow. When I try to have a conversation the larynx and throat cramp.
See MDA Quest article for more information: http://mdausa.org/publications/Quest/q64dysphagia.html.
I have a hard time driving for more than 20 minutes as my forearms/hands cramp from holding on to the steering wheel and my foot can’t hold the throttle. Thank God for cruse-control. :o) I can manage driving for about 2 hours by trading off the hand holding the steering wheel, rest one while the other works. Dr. Kramer has scheduled me to see a Physiatrist in mid-May.
May – Not much change in May. The visit with the Physiatrist was a farce. He said he didn’t think I needed any physical therapy and was resistant to getting me the AFO’s. He gave in towards the end of the visit and said he would get one for the left foot. His nurse, at checkout, told me it would take about a week to schedule things for the AFO.
June – It’s been 3 weeks now since I saw the Physiatrist, still no AFO. I called his office and the nurse said that the doctor was running behind and his notes didn’t get to transcription for a week, then transcription was so far behind in their work that it wasn’t completed yet. I made an appointment with my PCP and he decided it was time to re-do the SPECT scan and EMG. The EMG is scheduled for July 5th. I went in on the 22nd for the follow-up SPECT scan and here’s the result.
FINDINGS: There are multiple, bilateral foci of increased activity scattered in various areas throughout the brain. I think the most concentrated cluster of these findings is in the occipital region (1). I cannot identify any brain stem findings. The concentration of activity in the occipital region is similar to the previous study of 2/3/00. However, there are new areas of activity in the frontal (2) and parietal (3) lobes that were not present on the prior exam. There are some less well defined areas of activity in the temporal (4) lobes, which I cannot identify on the previous study. There is a rim-like area of activity around the left cerebellar hemisphere (5). A similar distribution of activity was noted around both cerebellar hemispheres on the previous exam. Diffusely, the brain shows very mottled activity with multiple foci of limited to no activity that gives a honeycomb appearance to the brain.
(1) Area of the brain that processes sight.
(2) Most anterior, right under the forehead.
(3) Near the back and top of the head.
(4) Side of head above ears.
(5) Just above the brain stem and toward the back of the brain.
July – My new neurologist, Dr. Jody Reiser, did the EMG test. She has scheduled me for a nerve and muscle biopsy on the 25th and has ordered AFO's for both feet. She told me to call the Physiatrist and cancel the left foot only AFO request.
