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Bev

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First of all... God bless each and everyone of you! And thank you Al for the personal welcome. It has given me the courage to begin to open up.
About a year ago I noticed that my right foot kind of had a mind of it's own and I had a couple of silly falls. My husband and I were over the road truck drivers (the real nice kind;-)) until October when it became too much of a problem. I just knew and dreaded a hip replacement. Since then I have gone to a chiropractor, an orthopedic doctor, 1st neurologist, family doctor, dpt/ecs specialist, 2nd neurologist, then to an ALS clinic and finally to a holistic doctor which just wasn't right for me... I have not been diagnosed yet and my visit to the ALS clinic was in January. Since then I have gotten worse. I can only walk with braces and a walker, my balance is awful. I have fallen several times and fractured my arm and 2 toilet seats. My toes stay numb, I have hyper reflexes. Cramps when I stretch and fasciculations in my hands, arms, back, some in my legs and a couple of weeks ago my left cheek started twitching but it has not done it this week. Also had one cramp in my neck right under my jaw bone but so far have no problems swallowing. Just hard to get the food in my mouth because of my darn hands and arms. I "think" I have some slurring but have never been an articulate speaker... I get tired quickly and cry often. I have so many questions but first of all would like your opinions on what it sounds like to you. ALS? PLS? PMA? SOMTHING ELSE? *I know I need to get to a doctor for an updated analysis. Is there a Dr. House in NC?
I welcome any and all comments!
Bev
 

Meg1

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It doesn't matter what we think. What did the doctor at the ALS clinic tell you?
 

patricia1

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Hi sorry you are having a hard time but I am no doctor but it sounds like pls you need to take a ride to John Hopkins in MD they are the real pros most reseach come from there Its not far from nc The faster you find out the faster you will get a team of professionals to help you with your issues you are facing. Good luck Pat
 

Bev

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None of my doctors want to give me a diagnosis yet. It has been over 3 months ago and I seem to be getting worse. I've had an MRI of my brain and upper and middle back. A spinal tap and dozens and dozens of blood tests. Results are all normal so why does it make me crazy when I should be happy that I am so healthy? It makes me wonder if it's all in my head.
 

Meg1

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Bev said:
None of my doctors want to give me a diagnosis yet. It has been over 3 months ago and I seem to be getting worse. I've had an MRI of my brain and upper and middle back. A spinal tap and dozens and dozens of blood tests. Results are all normal so why does it make me crazy when I should be happy that I am so healthy? It makes me wonder if it's all in my head.

What were the results of your EMG? How did you leave it with the dr. at the ALS clinic? Do you have a written report from him? If he didn't do an EMG, why didn't he?

I don't mean to be cross examining you. It's just that there's no one here who can possibly know more about your condition than an ALS doc, in an ALS clinic who has conducted a physical exam and (I'm assuming) an EMG. An exam in an ALS clinic is the gold standard.

FYI regarding your request for our input on your symptoms--almost any constellation of symptoms involving weakness, fasciculations and rapid reflexes could be ALS. But it doesn't have to be. That's why an ALS doc's opinion is so important. If you feel like he didn't give you all the information he gathered, you should call him to ask.
 

Bev

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Pat, thank you for the John Hopkins recommendation. We may be moving to Florida so I was hoping to get a great clinic going that way but if John Hopkins is the best I will go there. Do I need to get referred there by a doctor?
I also think it may be PLS except I read somewhere that fasciculations are not a symptom of PLS. Please correct me if I am wrong.
Bev
 

Bev

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Meg,
Thank You - Thank You! This is why I am so thankful that I found this site. I need your guidance because I am so clueless about how to manage my problems! I have had 2 emg's but I don't know how to read the results. The 1st one was done locally last December and he said possible PLS. When I went to the ALS clinic in January my doctor said that it was about the same but she did not elaborate or give me much conversation at all. It has been since my last visit that the fasciculations really got going and my arms and hands have gotten so weak. I will call tomorrow morning and ask for more information but I'm not sure if I should continue with that clinic or go somewhere else. I think I definitely need to do another emg.
 

Jamiet

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Bev,

You need to call the ALS clinic you went to and tell them you need to see the Doc ASAP. They, being an ALS clinic will understand and get you in soon.

YOu need to write all this down and all your problems on a list and bring to your appt., this way you don't forget to discuss everything you want.

Write all the questions down, as you think of them, this way you don't forget them.

I don't know much about PLS, but i think there is a sudeobulbar affect or emotional effect. Maybe an SSRI, wellburtin, zoloft will help. A good psych would help in this.

The best of luck to you.... Ask anything you need, were all in this together.

Rgds,

Jamie
 

CindyM

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Hi Bev. I think the problem comes from the fact that there aren't really any tests for ALS, and the other MND's. we tell them we feel numb or weak or our face tingles but really, how can anyone see that sort of thing? ALS is a clinical DX, meaning the doc has to be able to eyeball the deterioriation, along with other evaluations. By the time they can do that, things have progressed to the point where the EMG's finally can pick it up. So can the average person who meets us in an elevator or on the street, I'm guessing.

Now factor in the fact that, given there is no cure, no Doc wants to jump the gun and promise anyone they have a terminal and incurable disease.

Some folks wait months for a DX. Some, like me, don't get one going on almost a year. But I am in no hurry to be told anything other than what they currently know. They say say I have a neuro-muscular disease and will not get better but may not get worse. I'm practicing relaxing, focusing on my life, and doing all I can while I can. It is actually the way I should have been living all along.

Meanwhile, I hope you get some resolution sooner than many of us. If not, you'll be in good company! Cindy
 

Frizzel

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My hope for you Bev.

Yes you're right Cindy, practicing relaxing, focusing on life, and doing all we can while we still can. I forget who said it on one of the threads I read but it was about doing the things we've wanted to do while we still can. Having a MND myself, I'm an advocate for being aware of what's going on and then moving on. If you still have concerns Bev, keep digging. Also keep planting color and life into your mind, emotions and body.

All the best!

Frizzel
 

Meg1

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Joined
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Messages
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Bev said:
Meg,
Thank You - Thank You! This is why I am so thankful that I found this site. I need your guidance because I am so clueless about how to manage my problems! I have had 2 emg's but I don't know how to read the results. The 1st one was done locally last December and he said possible PLS. When I went to the ALS clinic in January my doctor said that it was about the same but she did not elaborate or give me much conversation at all. It has been since my last visit that the fasciculations really got going and my arms and hands have gotten so weak. I will call tomorrow morning and ask for more information but I'm not sure if I should continue with that clinic or go somewhere else. I think I definitely need to do another emg.

Hmmm. PLS would tend to indicate a clean EMG but since the doc who mentioned it wasn't an ALS expert I don't have a whole lot of confidence in his opinion. I think what you need now is a report on the EMG done at the ALS clinic (BTW--I PM'd you with a question about it). You can ask them to send you a written report which will have an "impressions" section on it which should have a diagnosis of some kind. While you're at it, I'd ask for your full medical records so you'll have MRI and other test results as well.
 

Bev

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Joined
Apr 14, 2007
Messages
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Learn about ALS
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US
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North Carolina
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10-4 on all your replies!
I will write down all my questions and call the clinic today. Sometimes I can be such a shrinking violet. I am already nervous about making the call but we didn't spend thousands of $$$$ to be left in a file. I belive that enough time has gone by that another EMG will either confirm or release me from my fears. I have tried really hard not to focus on my problems but it seems that I lose another ability weekly and it frustrates me to no end!
I really love the idea of planting color in my life and my mind. What a beautiful thought! I hope that I will eventually become as knowledgable and giving as you all have been to me.
Bev
 

patricia1

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Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Bev said:
Pat, thank you for the John Hopkins recommendation. We may be moving to Florida so I was hoping to get a great clinic going that way but if John Hopkins is the best I will go there. Do I need to get referred there by a doctor?
I also think it may be PLS except I read somewhere that fasciculations are not a symptom of PLS. Please correct me if I am wrong.
Bev
It is up to your insurance if you need a referral When you call john Hopkins for an appointment they tell you what to bring and a hotel you can stay at also get all your records copy and keep them with you where ever you go Take the films as well as the reports with you They like to read them themselves Good Luck Pat
 
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