Old 02-13-2007, 02:35 AM #1 (permalink)
mandem
Guest
 
Posts: n/a
mandem
Guest
Posts: n/a
Default Needing information

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.
 
Old 02-13-2007, 03:04 AM #2 (permalink)
Al
Guest
 
Posts: n/a
Al
Guest
Posts: n/a
Default

Hi Mike. Welcome but sorry you have to come looking for information. First don't worry about the long post. Some stories take a bit longer to tell. As you know we are not doctors here but from what you tell us I'd guess that it's not ALS. I'm not sure but it sounds like fibromyalgia or rheumatism or something arthritic or something along those lines. I'd be looking for more tests if I was you.
 
Old 02-13-2007, 06:27 AM #3 (permalink)
GWB
Guest
 
Posts: n/a
GWB
Guest
Posts: n/a
Default

Quote:
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.
 
Old 02-13-2007, 12:50 PM #4 (permalink)
mandem
Guest
 
Posts: n/a
mandem
Guest
Posts: n/a
Default Fibromyalgia/EMG

Thanks Al and Gary for your info. I am now in the process of combing the Fibromyalgia websites and have found some very interesting stuff. A lot of similarities to my wife's symptoms. One question I have, and maybe someone here could answer it: Can fibromyalgia cause an abnormal EMG? I'm still searching for answer online, but if anyone knows I would appreciate input.
Thanks again, and God bless you all.

Mike S.
 
Old 02-13-2007, 02:18 PM #5 (permalink)
Al
Guest
 
Posts: n/a
Al
Guest
Posts: n/a
Default

Not sure about that one Mike. Anyone else?
 
Old 02-13-2007, 03:24 PM #6 (permalink)
Sunshine
Guest
 
Posts: n/a
Sunshine
Guest
Posts: n/a
Default

Hi Mike. I have Fibromyalgia. I'm not sure about the EMG. My muscles do hurt especially if touched. I also have weakness but some days I feel a little "normal". I can't wear shoes without some kind of back to them for support because my muscles in my ankles and feet will hurt. I don't wear boots that go over my ankles so I'm not sure about that either. Maybe she should she a rheumatologist just to rule things out. Sorry I wasn't any help. My husband had one doctor do an abnormal EMG then another have it come back normal. It has been over 2 years and he still doesn't have answers. I hope your wife will get good news and it doesn't take too long. Take care, Sunshine
 
Old 02-13-2007, 04:36 PM #7 (permalink)
Jamiet
Guest
 
Posts: n/a
Jamiet
Guest
Posts: n/a
Default

You say your wife is real stiff, does she have trouble opening her hands, after they are gripping something tightly? Does she have twitching?

Also, you didn't mention atrophy? does she have any atrophy.

One thing that sticks out to me is something called Isaacs syndrome..i was tested for this, as this sounds like alot of the symptoms. It's a possiblity and it's treatable. Also, it would cause an abnormal EMG.

ALS generally, does not get better, so i would bet about 99% she does not have ALS. In ALS, the nerves die, once they are dead, they don't come back, hence, you don't get better.

Sounds like an autoimmune disease or something related.

No story is too long, we're all going thru what you've been thru. Ask anything you want, say anything you want, we're here to support you.

Good Luck!
 
Old 02-13-2007, 06:14 PM #8 (permalink)
ltr
Guest
 
Posts: n/a
ltr
Guest
Posts: n/a
Default

Hi,

I'm new to this site and have only received help from others. But, I can tell you that I have been diagnosed with fibromyalgia and an autoimmune disorder. My rheumatologist doesn't think it could cause the neurological symptoms and has just order physical therapy. I have read autoimmune diseases extensively and found one website (I will try to find it if you are interested) that said they can cause atypical symptoms of MS. When I worked in the hospital we had patient's with swollen hot joints related to rheumatism. I agree with the others that a rheumatologist may be of benefit to your wife. I hope she is feeling better very soon. Leslie

P.S. My EMG was normal with the fibromyalgia, but that was a year ago before the twitching and weakness was bad.
 
Old 02-14-2007, 07:20 PM #9 (permalink)
mandem
Guest
 
Posts: n/a
mandem
Guest
Posts: n/a
Default

Thanks to all for info.
Jamiet: regarding your questions.
She doesn't have any more trouble opening hands after gripping than she normally does. Her hands ache all the time.
She hasn't had twitching nor fasciculations.
There is some atrophy, most noticeably in her gluteus medius.
She has been referred to a rheumatologist and we are going for hand x-rays and more blood work.
The search for answers goes on.

Mike S.
 
Old 02-14-2007, 07:25 PM #10 (permalink)
mandem
Guest
 
Posts: n/a
mandem
Guest
Posts: n/a
Default

Thank you Leslie for you post.
I am checking out rheumatism web sites and would definitely be interest in any relevant ones you've found.
My thoughts and prayers are with you in you search for answers to your questions.
Mike S.
 
Old 02-15-2007, 12:48 PM #11 (permalink)
Poco
Guest
 
Posts: n/a
Poco
Guest
Posts: n/a
Default

Mike, Just to let you know we also went to Dr. Goslin and she is wonderful and very thorough. It took 3 months to diagnose my husband. I suggest you follow up with her for total peace of mind. I have fibromyalgia and arthritis in my feet. The only thing that works for me is exercise, walking and physical therapy. I can recommend a good doctor in Bend if that is where you live.
Good Luck,
Phyllis
 
Old 02-16-2007, 12:17 AM #12 (permalink)
mandem
Guest
 
Posts: n/a
mandem
Guest
Posts: n/a
Default

Poco-
Dr. Goslin was fantastic. Especially when compared to the experience we had at OHSU.
We will be following up with her. My wife needs to be ready for another "crap shoot", so to speak. At the moment, she seems to be improving. If we are in denial, so be it. The ironic thing about ALS is the lack of urgency. Ignorance is bliss.
Mike S.
 
Closed Thread

Tags
als, anger, back, clinic, condition, conditions, cure, daily, denial, diagnose, diagnosis, doctor, early, emg, emotions, falling, family, fear, feet, for sale, health, helpful, hip, information, job, looking for, lost, men, neurologist, night, onset, pain, pcp, progression, questions, sad, sale, sore, specialist, story, student, support, weakness, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

 
All times are GMT -5. The time now is 04:02 PM.
Copyright © 2017