First BFSer with ALS?

BFS Online Support Group

Moderators: JohnV, Arron, garym

First BFSer with ALS?

Postby Carolmarie on April 15th, 2003, 7:47 am

Hi Everyone. I've been twitching for for 7 months and 3 days. I've had my ups and downs with the MS/ALS scares like all of you. However, about a month ago, my throat muscles became like they were paralyzed. (They were my swallowing muscles, not my speaking muscles.) It lasted for several days, eased a bit, then came back but not quite as severe. It is still difficult for me to swallow. I had a modified barium swallow at the hospital & didn't exactly pass with flying colors. The speech specialist said it could be anxiety but there are certain neurological conditions that have onset like that. I didn't ask which ones. I really didn't want to know. Now, I noticed when I looked in the mirror the other night, that I can see the definition of my collar bone on my left side and there is a definite hole beneath that and the last time I said the Pledge of Allegiance it wasn't there. If you would put your right hand over your heart like you do when you pledge my indentation is where the ends of your fingers would rest, just under the collarbone. My husband had a nervous breakdown in December and is on 4 different meds so I can't tell him. My next neuro appt is 4/23. I am at work right now and having a hard time concentrating, eating or sleeping too. Only 60% of ALS cases start with definite weakness of which I had none. And I have twitched ALL OVER my body. Both of these facts are contrary to popular belief about ALS. I am asking for all of your support and prayers. Thanks...Carol.
Carolmarie
Member
Member
 
Posts: 33
Joined: December 26th, 2002, 5:59 pm

Postby Jenn311 on April 15th, 2003, 8:55 am

Hey Carolmarie...

You sound like you are really stressed out...I can see why! Just a thought...if it were ALS, you wouldn't get better. It is only progressive and never reverses itself. If you have been under extreme stress, which it sounds like you have been, your mind can make your body do terrible things. One example is that there is a high number of Cambodian refugees that have complained of blindness after having been tortured in the Cambodian prison camps. There is absolutely no organic basis for their blindness, only phsychological.
In psychology this is called conversion disorder...I'll read you straight from my textbook in Abnormal psych. about this phenomenon: "[i]An individual with conversion disorder will complain of physical problems or impairments of sensory or motor functions controlled by the voluntary nervous system-such as paralysis-,loss of feeling, and impairment in sight or hearing-all suggesting a neurological disorder but with no underlying organic cause. Although they are rare, complaints may also include memory loss or cognative or intellectual imparitment that resembles dementia but is reversible. Individuals with conversion disorder are not consciously faking symptoms, as are those who have a factitious disorder or who are malingering. A person with conversion disorder actually believes there is a a genuine physical problem and it produces notable distress or impairment in social and occupational functioning". "Common symptoms are muscle paralysis (paresis), parasthesia (prickling or tingling sensation), dizziness, ...etc."
Now I am not saying that you don't need to have your problem looked into because it is all in your head, I just wanted to give you a heads up on what extreme stress can do to your body...esp. since your symptoms have been seeming to come and go as it is. I hope this helps. It at least gives you something to think about.
I'll be praying for you, too. Peace, Jen
User avatar
Jenn311
Saint
Saint
 
Posts: 681
Joined: April 4th, 2003, 3:26 pm
Location: Central Texas

Postby dwl on April 15th, 2003, 10:20 am

Someone previously posted an article about BFS causing esophageal problems - might be worth a search.

I guess many of us BFS'ers are still convinced that we will all be the first BFS'er with ALS - that's why we're all still reading the forum :)
User avatar
dwl
Hero
Hero
 
Posts: 312
Joined: September 22nd, 2002, 4:50 am
Location: UK

Postby Carolmarie on April 15th, 2003, 11:57 am

Hi, Jen. Thank for the words of encouragement. The only bad thing is, seeing is believing. My best friend in the world and I have lunch together everyday at her house. My mom & dad know about my problems and are very upset. My mom said I should tell my friend so I did today at lunch. I took my top off and she blanched when she saw the wasting of the muscle around my collarbone and below. Of course, we cried. I called my neuro's office and told the secretary. She said she would tell him and they are supposed to get back to me and maybe move my appt from 4/23 to sooner. Thanks everyone for your prayers and support. Carol.
Carolmarie
Member
Member
 
Posts: 33
Joined: December 26th, 2002, 5:59 pm

Postby Craig on April 15th, 2003, 2:44 pm

Hi Carol:

I'm very sorry to hear about your symptoms and can only imagine how difficult things have been for you lately with your health concerns and your husband.

Here is my two cents for whatever it is worth. Please keep in mind that I am by no means qualified to give advice; however, like many others here, I have done my fair share of research. From what you have described, I would find it very unlikely that you have ALS. Here is why:

1. You had a normal EMG - to the best of my knowledge, a diagnosis of ALS is impossible with a normal EMG.

2. You have seen multiple doctors including 3 neurologists and it sounds like not a single one even mentioned the possibility of ALS. Furthermore, there are specific things that doctors and more importantly neurologists are trained to look for during a visit ie. reflexes, strength, clonus, etc. etc. From what I gather in your earlier posts, all of the neuro appointments were esentially normal.

3. There are many things that can cause throat/swallowing problems (at the height of my worries I thought for sure I was having swallowing & speaking problems - all of which have since gone away). I saw from your prior posts that you were on some different meds - maybe those are causing some symptoms? Also, Jen's suggestion of stress makes perfect sense, as it could very well be contributing to your symptoms.

4. You have no weakness to speak of. Atrophy in itself can be a result of many things, if in fact it is truly atrophy and not just perceived atrophy. Also, it would seem very strange for atrophy to begin in your upper chest, as the doctors I have spoken to say it most often will accompany weakness and be found in the limbs with more serious neurological conditions.

5. As Jen also said, ALS does not come and go. You wouldn't have periods that you get better and then get worse and so on. Your throat is the same way.

As I said before, I am by no means qualified to give you advice, but I can give you my opinion and that is I highly doubt you have ALS. There are plenty of other things that I'm sure someone more qualified could speak to as to what might be causing your symptoms. Some suggestions I have are to:

1.) post a question at http://www.medhelp.org in the neurology section (part of the Cleveland Clinic);

2.) go to (http://neuro-mancer.mgh.harvard.edu/cgi ... isplay.cgi?) and select the neuromuscular section - you can do a search and find people who have atrophy and that DO NOT have ALS;

3.) try to relax and control your stress as best as you can. You are going to see another neuro no later than 4/23, who I would bet is going to tell you that you do not have ALS.

Hang in there....
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Postby Craig on April 15th, 2003, 2:59 pm

Carol:

One more thing from the Mayo Clinic Survey:

"...if a patient with benign fasciculation has a normal physical examination performed by an experienced neurologist and a normal EMG examination, they can be strongly reassured. There is only one case in the literature of benign fasciculation progressing to become motor neuron disease. This patient had clear cut motor unit potential abnormalities that distinguished him from the patients we have described."

1.) You have had multiple "normal physical examinations"
2.) You have had a "normal EMG examination"

For the one person who had benign fasciculations progress into MND, they had an abnormal EMG with "clear cut motor unit potential abnormalities" - something you do not have.
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Postby Jenn311 on April 15th, 2003, 3:52 pm

Hey Carolmarie...

Hang in there! That was a really good post by Craig for putting things in perspective for you! I would agree with him highly that it sounds very unlikely that you have ALS. Have you been eating normally? Could you be simply emaciated rather than atrophied...ie, do you still have use in the muscle in your chest?

I've been thinking about you all day...I hope you can get in to see your neuro sooner than the 23rd. Let us know!
Peace, Jen
User avatar
Jenn311
Saint
Saint
 
Posts: 681
Joined: April 4th, 2003, 3:26 pm
Location: Central Texas

Postby Carolmarie on April 16th, 2003, 7:25 am

Hi, everyone. Thanks so much for all the wonderful information. It is very comforting to have so many great people in the same boat. Last night I wet to the one person we can all go to for sage advice and that's mom. I am about 25-30 lbs overweight so there really aren't any slim areas on my body. You can imagine how I felt when I looked in the mirror and saw my collarbone protruding and a "dip" in the muscle below it definitely not symetrical as it always has been. Well, mom looked at it and said that it looks like an injury, the collarbone is actually protruding and it is curved--not flat like the other side. The skin around it is starting to bruise too. I was helping my husband do some things over the weekend and having been a major couch potato all winter, an injury is entirely possible. I have to call my neuro's office after 9 this morning and they may have me come in so they can look at it. Also, my fasciculations have been waking me up in the middle of the night which I've never had before. Mostly in the abdominal/diaphraghm region and legs. Sometimes I wake up and the whole bed is shaking. I think Aaron or someone said something like just when you get used to your symptoms something new comes along to scare you to death. I will post again when I find out more. Again, thanks for all your support...Carol in Maryland.
Carolmarie
Member
Member
 
Posts: 33
Joined: December 26th, 2002, 5:59 pm

Good luck!

Postby Jenn311 on April 16th, 2003, 8:31 am

Good luck getting into your neuros office.. and let us know how it goes!
Jen
User avatar
Jenn311
Saint
Saint
 
Posts: 681
Joined: April 4th, 2003, 3:26 pm
Location: Central Texas

Good luck!

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: Google Adsense [Bot], Yahoo [Bot] and 4 guests