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TedH5

Very helpful member
Joined
May 17, 2010
Messages
1,142
Reason
PALS
Diagnosis
08/2010
Country
US
State
GA
City
McDonough
I am a 38 year old male. I have Muscle weakness in my left leg and left arm. I first noticed the weakness and fatigue in my left leg about 8 or 9 months ago. It has gotten progressively worse. In the last few weeks I have begun to get muscle tremors in my limbs, hands, around my eye and occassionally my back. I also have been told that I have Hypereflexia. I had one EMG and NCV done on my leg only about a month ago that was clean. I also had an MRI of my neck and Brain as well as an MRA of my Brain. They all came back clean. Based on a recommendation of my Orthopedic Dr. I went to a first rate Neurologist last week. He did a very thourough examination and also looked at my MRI's and MRA. He said that he wants to do another EMG and NCV himself and said that it would be more thorough and comprehensive and would include my arm not just my leg as well as additional muscles in my back. He then advised me that I need to bring my spouse to the test and he said that he was confident that it was neuromuscular in nature and he said that it could potentially be ALS.

Also the Dr. did not tell me this but he spent some time looking at my tongue. When I got home I looked at it and it appears to have bumps all along the outside of it. I looked it up on the ever dangerous "DR" Google and it looks as what they describe as scalloped tongue.
My follow up with my Neurologist for the EMG and NCV is this Thursday at Emory University Midtown Atlanta Hospital.
2 Questions - is what I have described consistent with ALS diagnosis and what other neuromuscular disorders have similar symptoms? Someone mentioned Non - diabetic systemic neuropathy? Is that a possibility.
Obviously I am very concerned. I appreciate your help. Thank you very much.
 
Hi Ted,

First off you have no diagnosis yet..ya threw me off with the diagnosed date :) Secondly, there are so many neuromuscular diseases. Even if you have an abnormal EMG thursday it doesnt mean automatically you have ALS. I am assuming you are seeing Dr. Glass at Emory. He is an amazing neurologist and one of the leading neurodiagnostic physicians in the country and pioneer for clinical trials on ALS. While muscle weakness is a symptom of ALS it is common in an infinite number of diseases.

I have a scalloped tongue and tongue twitching and I still don't have ALS. I have a dirty emg with all the nasties included but still don't have ALS. Try not to worry yourself too much. I know thats easier said than done but you didn't mention any slurred speech in your post and if ya had tongue atrophy you would be seeing tongue weakness (slurred speech, trouble swallowing).

Just be confident that ALS is a diagnosis of exclusion and Dr. Glass will take care of you and if he says you don't have ALS, please believe him and if it is ALS we are all here for you and just know life doesn't end with 3 letters or a dirty EMG. I will be praying for you and if you wanna talk PM me I'm always around to help.

Love,
Kelly
 
Hey Ted,

When you say leg weakness that started 8 months ago do you mean your whole leg or do you mean the lower (calf and foot) or upper (thigh)?
 
Ted, I am praying that you don't have ALS. And also I find it difficult to believe that the results of your emg would be any different than the one you had one month ago in your weak leg. And I also agree with Kelly, that if your tongue was atrophing you would have some issues with speech.
 
Ted, I am sorry your neurologist mentioned ALS because most general neurologists have not seen much ALS, much less other benign neuromuscular stuff. There are many possibilities - Dr Glass, or any of the other fine neuromuscular folks at Emory, will take care of ya. Best wishes.
 
i'm so sorry that the neuro mentioned that possibility. i think an emg wouldn't change within one month (if your emg one month ago was done correctly). do you have just weakness or also atrophy of you leg and arm? i also think if you have tongue atrophy you would have some troubles with it by now. in my case i have probably atrophy of my calf and also non stop twichtes in my whole body for 7 months (mosly in my legs)...but i don't feel much weakness. i had 2 emgs done of my calf, one 5 months ago and one one month ago, both without any fibs or psw, normal mup, and mormal interference pattern. i also have seen an als neuro and he said he don't know what is causing the changes in my calf, but he isn't shure if it's atrophy and i don't have to come back. he also ordered a mri of my calf to see if it's atrophy or something else. but the radiologist said my calf muscle is totally symetric to my other calf...so mabye there is something going on with my subcutaneus fat.

but don't panic...go to the emg and then you will see...and somthing else could cause your problems

p.s. sorry for my english ;)
 
Hi Ted,

I hope this posting does not come off as being rude. I do not intend it to be of that nature.

I find it odd that the first rate neurologist that you saw would tell you that you are potentially dealing with ALS, without first performing his own EMG.

As many PALS here will tell you, it takes a long time to DX ALS.

In my Opinion, he was rude/wrong to make you worry needlessly.

A). You have a previous clean EMG
B) Even if your EMG next week comes out, as they say, dirty, it still does not mean you have ALS.
c) ALS is a disease of exclusion

If this were me and a First rate neurologist told me that I may Potentially have ALS, you can bet yer last buck that I'd have a long list of questions for him! You owe it to yourself to find out, what makes him suspect, a possibility/potential DX of ALS?
Again, not to be rude but I would be directing your very important questions that you posted to the Dr who has told you this news. He should have the answers.

I hope your EMG comes out clean again and Im sorry that your Dr has caused you to worry at this point and time.

Good Luck!

PS: You should delete your DX date on your profile. Dont rush what may never come. :wink:
 
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Well I am now on Rilutek. Thank God for insurance. I gues snow I just live one day at a time and make sure my family and friends know how much I love them. Some people get hit by a bus and die, some people have a heart attack and die all without warning. Maybe if they had the opportunity to come to grips with their own mortality they would approach life differently. Well I am now staring at my own mortality and have the opportunity to cherish each day and love each person in my heart they way they deserve. My Priest told me to keep the faith, I told him I have no choice that is all I have. I refuse to stop living my life, the sun is going to rise everyday and so am I until I no longer can and until that day I will laugh and cry and hug and kiss and hold my family everyday. They will always know how much I loved them.
 
Ted, I love what you had to say...this is how I want to live everyday also...most the time I can do it..smile! Dark days sneak in between sometimes.hard as I try not to let them...love your spirit..made my day..hugs, Linda
 
hey ted! do you have a diagnosis now? how was your emg?
 
Our ALS neurologist put my husband on rilutek months before he got the diagnosis because it works best in the early stages of the disease and won't harm you if you do not have the disease. Don't let that scare you. They often do that while they are looking for answers.
 
I am going to answer some questions and post some concerns. First I appreciate everyone that has been supportive. I know that everyone on here is impacted in some way by this deadly disease and everyone is having a hard time coping. So I pray for everyone and hope that everyone finds peace in their lives and urge everyone to keep the faith.
First answering some questions that have been posed. I have not seen Dr. Glass yet, I am seeing another Neurologist that is associated with both Emory and Piedmont and is a Neuromuscular specialist, he is a graduate of Emory University and did his residency at Emory under under Dr. Glass. He is going to send me to Dr. Glass later this summer he also offerred to send me to the Mayo clinic in Jacksonville if I prefered but I told him that I live in Alanta and have heard good things about Dr. Glass so I am content seeing him. As far as diagnosis my EMG showed some slight abnormalaties but not enough yet to provide me with a 100% Clinical diagnosis as the D said. That being said the Dr has done every blood test under the sun, two sets of MRI's on my brain and spine one with dye one without an MRA on my Brain to rule out stroke. Every test has come back clean. The Dr explained to me that since this is a degenrative disease it is not unusual to take months or longer to have an official Clinical diagnosis. Unfortunately at this point everything points to one thing, ALS. I asked him if there was anything else and he said everything else at this point has been ruled out unless it would be some rare virus that he would not have a test or cure for. He is going to do a pulmonary test because I have had some issues getting out of breath easily. In a month he is going to do another clinical exam to measure the progression of the symptoms. Then based on that he will send me to Dr. Glass for an EMG. Please keep in mind my symptoms are left arm and left leg weakness, muscle spasms all over my body and now losing my breath easily. My leg weakness is gettting worse. Now if I am sitting down in a chair and you put your hand on my knee and provide just a little resistance I am not able to lift my leg up even though I am exerting all the effort I can. Trust me I pray daily it is something else, unfortunately at this point everything points to ALS. Hopefully through divine intervention it will be something else.

Hopefully that has answered everyone's questions. I have to say I came to this sit efor support and while some have been very supportive and helpful I also feel like newcomers are not welcome here by some. Maybe I am just being overly sensitive because I am dealing with this but it feels like this is some type of exclusive club that is skeptical of anyone else that posts here and has concerns about having ALS. I do not want ALS and am hoping it is something else. I am not a hypochondriac (sp?) and I have seen numerous Dr's to get to this point. The reason I am seeing the Neurologist I am is because my Orthopedic Dr and my first neurologist said I am a "Zebra" evidently a medical school term and that I needed to get to a specialist. So believe me I did not jump to this conclusion and either did my Dr's. My last appt was Friday and he walked me down the path of what assistance devices are available down the road. I am on Rilutek for 2 weeks now which he was able to get my insurance company to agree to pay for. he also gave me a packet on ALS support group here in GA which I have refused to open as of yet.
I am keeping the faith because that is all I have. That being said I am not going to stick my head in the sand and live in denial either. It is what it is and I am going to deal with it head on. I apologize if I offended anyone I just felt like from reading other links and posts there is an opportunity on this forum to be more empathatic to new people who come here and have legitimate concerns and fears. Again that is a blanket statement and some people have been extremely gracious. I have read all kinds of links and posts on here, some are recent and some go back many years it seems like there is a real reluctance to accept new comers or even patience or tolerance to help people who are in the akward and from what I have learned not uncommon stage of "pre clinical diagnosis". I hope that I continue to be welcome here and once again I apologize if I have come across the wrong way or have offended anyone or appear ungrateful for those that have provided comfort and reassurance. God Bless everyone on this site, I hope you all find peace happiness and comfort in your lives for you and your loved one's.
 
Of course you are welcome here. I hope that things with Dr. Glass later this summer indicate that it is not ALS. My husband was a "zebra" for a long while too, and was lucky in the end to be diagnosed with CIDP-MADSAM. Take care Ted.
Laurel
 
Thank You Laurel :)
 
Ted, I am very glad that you have come to this sight . We are an exclusive group of folks that is for sure. We are a close net family and we look out for each other...because of some mean spirited people that came to the forum recently causing hurt to some... I think some have become very watchful ...please don't take this in a negative way...we are here to listen and help anyway we can...I an truly sorry you are going through this. I pray it is not ALS. But if it is or something else please feel welcome, hugs, Linda
 
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