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Old 02-13-2007, 07:27 AM #3 (permalink)
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Originally Posted by mandem
I joined this group in October and have been reading your posts, almost daily, since then. This is my first post. Due to the fact that the medical community seems to have so few answers I find the antecdotal information on this site very helpful.
This is my story:
In the middle of August, 2006, my wife noticed some weakness in her ankles. At about this same time, she was having pretty extreme back pain. She has some stenosis and scoliosis and had suffered with back pain for many years. She went to see her orthopedic doc who referred her to a physical therapist. When she mentioned her ankle weakness to him, he was alarmed and told her she needed to see her PCP before she continued with the PT. Her regular PCP was out of town at the time and she went to see another doc who works at the same clinic. He did a physical exam and ordered MRIs of her spine (he suspected GBS). The MRIs were normal, other than the stenosis and scoliosis, and he recommended that she see a neurologist. When her PCP returned, she referred her to a neuro. (At this time, my wife could not walk in cowboy boots without falling down.)
We went to see the neurologist (this was September 26) and he did a physical exam and an EMG up to her hip. The neuro said he didn't believe the stenosis was bad enough to be causing her weakness and told us he would confer with his colleagues and let us know what the next step would be. The following day, he called my wife's PCP and told her to have us drive to Oregon Health and Science University in Portland
(200 miles away) and get admitted through emergency. Apparently there was a 2 week wait to get in the front door. (Looking back, his sense of urgency seems to indicate that he did not suspect ALS, but was concerned with what seemed to be the rapid progression of her condition.)
We left that day for Portland, spent the night in a motel and headed to OHSU the following morning. The emergency staff took her into a room where she was questioned by a medical student, and emergency physician, and the chief resident. We really had no answer to "why are you here?", other than "the neurologist told us to come." Finally, after a couple hours of waiting around and several examinations and much questioning, they took her to have a LP and more MRIs. By now it was 3:00 in the afternoon on Friday, and the head neuro-muscular specialist was getting ready to go home, so they decided to do an EMG first. It was a thorough and brutal exam that left her quite shaken.
Shortly after that, they directed her to the family room and when the resident neurologist came in, he told her "you have ALS." SAY WHAT?!
As you can imagine, our world crashed around us and our lives were never to be the same again.
We had just been married in July, and I had moved to her home, because she had a great job as a tenured instructor at a junior college. This diagnosis meant; quit her job, put her house up for sale and move back to Idaho where I had a home and where we we had a much better support system. During the next 2 months, we went through all the emotions associated with an ALS diagnosed; shock, sadness, fear, anger, despair, denial....
all of it. We relived that day (we call it the day from hell) over and over. That's when I joined this group and spent many hours not only here, but on every ALS site I could find.
I was obsessed with learning as much as I could about ALS. At the same time I shielded her from finding out any more than she needed to know and she was grateful for that.
I found an article on-line, about the ALS center at Providence Hospital in Portland and about Dr. Kimberly Goslin who had dedicated her practice to ALS and ALS patients. We made an appontment and went to see her in early December.
Meanwhile, my wife's condition seemed more erratic than progressive. When we made the appointment to see Dr. Goslin, she was probably at her lowest point. She was fearful and had been experiencing increasing weakness and numbness that seemed to be ascending, mostly in her left side. She was continously fatigued and the pain in her back was worse than ever. However, in the week between making the appointment and the actual visit to Providence, her condition seemed to improve. She felt stronger, and the numbness seemed to subside. Dr. Goslin examined her and did another EMG. I asked her, with what she knew at that point, if she would diagnose ALS. She said "no".
She said that my wife,s condition did seem to be improved (she could not walk on her heels during her OHSU exam 2 months prior, and now she could). She said "people with ALS don't get better".
I don't have to tell you that our ride home from Portland was much different than it had been 2 months before. Finally; hope. I know we are not out of the woods and that something is definitely wrong; and we are sure it is neurological, but we feel that we have neutralized, at least for the time being, the ALS diagnosis. We will go back to Providence when my wife is ready. Right now, she is taking solace in not having a diagnosis.
I apologize for the length of this post, but for those of you who are still with me, I have some questions:
1. Has anyone been diagnosed under similar conditions? (one EMG, emergency room, by one doctor, Friday afternoon, etc.)
2. Has anyone had symptons (weakness in ankles) that have not progressed and may have even improved over a 6 month period?
3. Has anyone experienced sore (tender to the touch) elbows and swollen hands? (her hands are swollen between the joints and are painful all the time).

A couple other things: She is fatigued all the time (Although she now takes a daily walk of about 1/4 mile), she has not lost appetite, and in fact, after initially losing several pounds has now gained it back. She is very stiff and sore (especially feet) in the morning and after a nap, but as she loosens up, feels better and actually gets around pretty well (although no where near where she was before onset).

I am very suspicious of the diagnosis, and am looking for any like experiences or antecdotal information from anyone at this point.
Again, I am sorry this post is so long, but I've been holding this all in for a long time. I love this site. It has been a Godsend for me, and I feel that I know many of you. I pray for you all and for a cure for this dreadful disease.
Thank you in advance for any help.
Mike S.
I have arthritis and fibromyalgia and what you are describing your wife having is almost the same exact symptoms I have as well. I'm not suggesting that is what she has, but the symptoms are identical. While fibro and arthritis aren't fatal (thank God) it is indeed painful and quite exhausting. I hope your wife gets a definite diagnosis soon so that she can at least have peace of mind knowing what she has and learn what she can do to cope with it.