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TomR1972

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Hi Jamie,

You mentioned in a prior post with a link provided that noise on the emg after the initial insertion was not bad. I thought it was but read the information on the link and came away with your thoughts. However upon looking further it says that there should be no noise(acitivity) after the initial insertion.
If there is, it is considered abnormal as noted, "Electrical activity in a muscle at rest shows that there may be a problem with the nerve supply to the muscle. Abnormal wave lines when a muscle contracts may mean a muscle or nerve disorder, such as amyotrophic lateral sclerosis (ALS), post-polio syndrome, inflammation, or other muscle problems".
Just curious to what you were referring to in your original post awhile ago?

I was told by the examiner to loosen my leg, not tense up, and asked if I had back problems. No ongoing, dr visiting back problems but at times it does hurt. Not at the time of the test, however. So I guess with that being said I have myself narrowed my situation down to als, post polio, inflamation or other problems which are noted as MG or Myopathy. Well I don't have post polio, inflamation should have been noted on my blood tests, MG causes eye issues and lots of pain which are not me though I do have pain. This leaves me to Myopathy or Als and we all know where that will more than likely lead to. I too had the all normal emg on paper but was made aware that something was not right while taking the test. Why are Dr.'s so afraid to dive deeper into the problems? Stanford here I come on Friday the 12th, hopefully its a consultation and exam.

Also would it be normal in Als to have a right leg issue that waxes and wanes but is always present? It has been so bad where the weakness forced me to take baby steps. The stiffness that was present and made it difficult to move up and down stairs is gone now. The weakness from the worst point is 80% better but always sorta with me. I did have a lot of pain with little leg usage that has since gotten better but not gone away. Now both my basal joints hurt like hell. I have had so many symptoms appear and either dissapear or get slightly better all at the same time new ones arrive. The progress into new areas screams als but the improvement in old areas makes me think twice. Anyone, I welcome all feedback?
 

Jamiet

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Tom,

Nothing is for sure in all this crap. I'm just plain old frustrated.

From what i've read, the activity should stop after insertion. YOu are correct, if it doesn't, there are problems.

Regarding your waxing and waning of symptoms, i have no clue, nor do i think the doctors.

Sorry, but i am really beginning to hate doctors. They have put annmarie and i thru the ringer, also, tom, lou, cindy, ltr all the PALS here and the list goes on. I know they are not GOD, but if they don't want to be treated as such, then they shouldn't make such high confidence judgemental calls. With guarantees to people about a disease which they cannot even have a test for.

I'm just frustrated after yesterday, i'm hurting inside and i truly feel, i'll be next in line. Anmmarie and i have always said, we had something different than everyone else and whatever one of us has, the other has. It's a bad day for me and my heart goes out to Annmarie and her family.....
 

TomR1972

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I agree

Dr's have and are on my shxt list. I really feel bad how they strung out annmarie and I hope to god they havn't done the same with you. There really needs to be a standardized test for this crap. Thanks Jamie!
 

crystalkk

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Tom,
What do you mean you were told you had a normal emg on paper ,but while taking the test you were made aware something was wrong.
If you are tense and stiffen up the noise after insertion will not go away thats why they tell you to loosen up. Sometimes you think you are relaxed and you are really not.

What are the basal joints? all my joints hurt.

Don't always think the worse, I know it is hard to do believe me?
I don't know what other tests you already have had.
 

pldo

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I agree that doctors are crappy. I have been to so many and all they can tell me is "anxiety/stress." I know this sounds kind of like a conspiracy theory- but I think they want you to keep coming back because then they get more money.

My heart breaks for Annmarie as well. I know the pain her family is going through and I would not wish that on anyone- not my worst enemy.

Jamie- you have to have a little more hope. You were told that because of the results of your biopsy you had no chance of having ALS. Are you feeling any better after the treatments?
 

comfortable with ALS

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Now You Listen To Me Jamie

Jamie you were told by an als specialist you dont have AAAAALLLLLLLSSSSSSSSSS! our dear friend Annmarie was told by nueros that worked with als patients she doesnt have it god love her! she went to an ALS specialist and was told she did. now you were yelling at me telling me i had bfs! and i have to be strong now and tell you your ok. iam just as scared as you maybe i shouldnt believe my ALS specialist either you guys not everyone is going to have the same situation yes there are rare cases out there. and this is a hard disease to diagnose. yes jamie i still feel i have als to i guess every doc in the world is wrong.
 

Jamiet

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Thanks for all your support, but annmarie and i have had several extensive conversations on our symptoms, back to when she first joined here. We are pretty darn close, alarmingly close in what we have been thru.

The reality of the situation, is my muscle biopsy was called "essentially" normal due to the "rare" abnormalitites found.....they were "rare" denervated and atropic fibers and a mild increase in fibrosis. That is not normal to me, just sounds like the doctor didn't know what to call it.

Also, go look up the medical definition of "essentially". You will be amazed. Once you do this, then come back and tell me what you think.

Rgds,

Jamie
 

pmbenb83

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Hello everyone ~ My husband is going through the same scenerio as all of you who are undiagnosed. I totally understand your frustration with the doctors I have had my own personal issues with them, but I also understand this is a very hard disease to diagnose and may come across as doctors withholding information or mistaking information, but they need to make sure that all of the information from your bodies have presented themselves before making a final diagnosis of a life threatening disease that has no cure. I say this because everyone reacts differently. Hopefully, most people will turn to their families for love and support and fight with every ounce of their being, but there will be a person who just cannot mentally handle it and make irrational decisions, so it is imperitive to get this right. It is definitely not easy for them to give this diagnosis either, so they want to make sure they are correct.

I definitely know that some doctors are jerks, but for the most part, they really do care. I work for doctors and believe me I hear in their voices when they dictate a terminal diagnosis for a patient or have a death of a patient. They too question "what could I have done differently." The "God" persona that some give us is just a coping mechanism for them too. Who wants a crying doctor when you need someone strong to support you and find the answers.. that's why I'm not a doctor. :) We have dealt with some awful bedside manner, but for us our anger/frustration is with this disease and not the doctor. They cannot help it if all of the pieces of the puzzle from our test results don't fit. They have to diagnose us from the information they put together, which is the best that they can do.

I don't know at what stage of an illness that you are, but hopefully you are all still able for the most part to enjoy your life, interact with your families, go to work, enjoy your hobbies, etc. We could get hit by a bus crossing a street tomorrow... we don't know, but we have to try to enjoy what time we do have here with our loved ones and try very hard not to let our worrying rob us of that. Believe me I know how hard this is. Even as I am writing this, I also wonder if I have 6 months, a year or 20 years left with my husband and what will he have to endure, but I know that tonight we will have dinner together, laugh, maybe go out and get ice cream, and watch Friday night TV. We have to live in the now and the now is what we do know which is... yes something is wrong, but he is still alive with us and we have to do our best to cope with what we have.

Please don't be angry with me for trying to give us all a pep talk and show that there are 2 sides to this awful process of diagnosing. I just want us all to enjoy this weekend and try not to dwell on the negative.

My best to everyone.
Pam B in Va
 

crystalkk

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Jamie,

When did you have your biopsy?
how were your emg's

My als specialist will not do a muscle biopsy yet, because my emg's are still normal.
Which I totally can't understand!
My hands and feet are atrophied and my fourarms.
Every joint in my body pops and crackles really bad lately, the only thing I could crack before this was my knuckles.

I think everyone is scared with annamarie's diagnose, I had alot of pm conversations with her
and are symtoms are very much alike also. I just told her the day I think her & I are going to be diagnosed with something new that doesn't even have a name yet.

Have you talked to her yet?

How are your treatments going?
At least you had one thing come back bad and try something for it.

Crystalkk
 

TomR1972

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crystal

When I had the nerve/muscle test she asked while sticking me with a needle in my affected leg if I had back pain. Nope not at that moment. I could hear the constant noise on the machine and she couldn't get it quiet. I was not contrating my leg at that moment. Yet still when I got the report a crazy month later because they are so inept like most Dr's, the results were normal. Go FIGURE!

The funny thing for me this all started like I got a really bad virus. I could hardly walk, both legs felt extremely weak. Had to take baby steps. I could not stay awake,felt like I might passout, every muscle felt sore. My stamina and alertness came back for the most part. My left leg is back to normal but my right leg has been the same for about 9 months now. It never gets fully better, sometimes feels better but certain movements will really take a toll on it. Now my thumb joints hurt like hell. I notice no atrophy on the palm side but the top side is very wrinkled. From what I read everyone is concerned with the palm side. I get intermittent sore muscles where I feel I worked out but didn't do crap. I have woken up with numb fingers that go away once I get up.

I feel like i'll be one of those who has problems for 3 years before enough is found. The only trump card to that was I think my first emg probably noted als but they were too stupid to look further. Any time I mentioned als they got mad at me. The lady who performed the test I think is the Dr's wife and she could care less. Did the test in 15 minutes and claimed all is normal. I mentioned to the dr about the pain in my hands and he said well that I can't take care but I can give you a prescription. He supposedly was a highly respected local neuro in our big city. He said he'd help me and find out my problem that was 6 months ago. He hasn't done squat. I was just another hard to determine case and he has no time. So off I go to the world of specialists, who will drag this on because they are afraid how the patient will take the news. So lets allow them to slowly degrade until we have to diagnose what we both knew all along.

Sorry for the depressing note.
 

CindyM

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Hey Tom, we can handle a little depression around here. We've all been there at one time or another. Interesting that you said,
he funny thing for me this all started like I got a really bad virus.
Did you tell your docs that? there are some treatable conditions that start out like a virus. Just thinking...Cindy
 

TomR1972

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cindy

I never told him that it started out like a virus but he sure as heck knew what happend when and how bad. I have had probably 95%of every kind of blood test you can have. I came away with antiphospholip antibody positive which the rumy says take an aspirin a day. I also came away with Epstein Baar, two of the three tests for that were positive. My belief is I got hit with ALS, my prior dormant infection of epstein baar then became active and knocked me completely out. That explains the feeling of getting better but not being completely right, as they epstein baar became dormant again. Right now I gag easier than normal, nose runs constantly, have to snort and hack to move phleghm around. I go through a bag of cough drops a day. I think I am pretty much f'kd. I wish I could harness the positive thoughts that many on here have but I can't. Any time in my life when everything starts to go good not great, something smashes me back down. This is just another brick laid down before me to step on.
 

ltr

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Tom - I have also been diagnosed with antiphospholipid antibody syndrome and it goes way further than just an aspirin a day, though that's all I got from the rheumo too. My new local neuro seems to think it is the reason for all my neuromuscular problems. I found this APS Organization and it explains a lot more about this illness. I think many,many people have it, but how would they know....the docs don't check or even know what to do with it.


http://www.apsfa.org/aps.htm#5
 

Pythia

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@#&(&* doctors!

I am so fed up with my GP! I am boycotting doctors for the month of October.

I know that sounds really weak - but I need a break. If my diagnosed is really ALS, a month is not going to make a big differencce in my condition and it might just reduce my anxiety! My last appointment with my GP was a 5 minute visit where her only comments on my hand atrophy was that I was at least loosing weight somewhere. Yes, I am a little overweight, but I think her comment was way beyond professional.

I have only seen my Neurologist once and am due to go back in November; I will wait and see if I have any better luck with him. Unfortunetely, I am less than optimistic after reading some posts here. Especially since this is the doctor who so calmly said "it could be ALS or something like it" ... come back in 6 weeks, have a nice day.

So delusional or not, I am giving up on doctors for a couple weeks and concentrating on the things that really matter.
 

CindyM

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I understand, Pythia. I feel like if it is MND then a month's break won't matter. I am actually on a six month break right now, not counting the pulmonary clinic which I go back to on Tuesday. Like you, I feel better emotionally if I concentrate on other things. I actually told Liz just the other day that I was thinking of telling my Doc to just call me when he thinks he knows what is wrong with me! :-D Cindy
 
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