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ama672

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I apologize for causing any holes in my story. The last 7 weeks have obviously been the worst in my life and my symptoms were atypical according to my nueromuscular specialist (that's why the first 3 neuro's dismissed ALS and the 1st neuro said my EMG was clean).

Since I'm only 26, ALS doesn't come to mind for many neuros so that's why it was difficult. But I KNEW something was wrong with my body (a pinch nerve doesn't cause left arm and right arm weakness, left hand atrophy, shortness of breath, excess phlegm and twitching). In hindsight, I wish I never even went to the doctors so as to never know.

I hope you can all please support me in the future.
 
AMA, I keep trying to tell you that a pinched nerve can cause ANY symtoms from the level of the pinched nerve down ANYWHERE in the body below that point!

The shortness of breath can be caused by nerves, the phlegm can be caused by acid reflux caused by nerves.

My husband had what the als specialist called a little herniated disc at T6/T7 that shouldn't be causing any of his symptoms (fasciculations, weakness/atrophy/paralysis/spasticity, and diffuse denervation of the lumbosacral AND paraspinal muscles...but guess what...the neurosurgeons we found after 7 months went nuts when they saw it and got him in for surgery knowing that it would cause all of his symptoms.

It takes fighting for your own life and being your own advocate...I don't know why you want to believe that THIS is what's wrong with you instead of FIGHTING!

This is the last time I will respond to you because it's a waste of my time to keep posting the same thing over and over again.

I AM TRYING TO GIVE YOU HOPE!

I pray for a better outcome than what you have hastily resigned yourself to...I don't get it!
 
To AMA,
I totally understand what you going thru, and I don't care if your story got "holes", or not. I don't think that anyone in a right mind would come to this forum for fun.
I'm also waiting for my appt at the ALS center; people on this forum gave me a lot of support and courage.
Try to relax; I use meditation and deep breathing. Good luck with your upcoming appts.
Cookie
 
I am going to now give you the benefit of the doubt . . . forget about your inconsistencies and chalk them up to anxiety and assume that you were given a hasty diagnosis. I’m still not sure if you have even been given a diagnosis or if you have simply been referred elsewhere to get to the bottom of your condition.

If you have been given a diagnosis, these are the reasons I say it was given hastily:

You do not have UMN symptoms, which are needed to give a diagnosis of ALS.

Your symptoms started at the end of May and to get an ALS diagnosis in a matter of a month is unheard of because it is a diagnosis of exclusion and progression. It doesn’t seem that they have excluded much of anything and to say you have progression in a month’s time is ludicrous. I could almost understand if you had presented with weak and wasted limbs but you are still lifting weights and from what I read in another one of your posts, you indicated that your arm had gotten stronger. That is not something that happens with ALS.

Your symptoms have traveled from one limb to another in a matter of a couple of weeks. That is something I have neither read about nor heard of from any neuro. Movement of symptoms that fast should cause a neuro to look for a differential diagnosis.

You only have two areas affected and you need three areas affected. Your bulbar area could have counted but they didn’t EMG it (you said you got a 4-limb EMG) and your bulbar symptoms are too vague to be attributed solely to ALS. On top of that, to have limb-onset ALS and bulbar-onset ALS is nearly a statistical impossibility.

Listen, there is just too much here for you to accept a diagnosis of ALS if that is what you have been given. Get another opinion from a new set of eyes, which it appears you might be doing.

I will end this by apologizing to you for my rhetoric in your other thread and to anyone else I might have offended. Please be careful with the content of future posts and make sure you give us the full story, so we know all of the facts.

P.S. Get a hold of your EMG findings. I know how to interpret them and I'm curious to see what was found.
 
I appreciate your response Wright. I have left hand atrophy but my EMG in my left hand was still normal as well as my bicep in my left arm (my forearm and tricep were abnormal along with abnormal tricep in right arm). If I had atrophy in my left hand, wouldn't I have a dirty EMG in that hand?

Thanks.
 
Ama672,
I believe if you can answer a couple of questions, this might help the people here help you:

1. If you have access to the abnormal EMG, can you type out here the "neurospeak" that the report says? It will have lots of medical jargon.

2. Exactly what did the LAST neuro tell you, and what did he say his reasoning was?

3. Who will you be seeing at Johns Hopkins?
 
and support is what i will give u ma fren....but for me to do that u need to support me to support u so we both need some serious support...i know u will support what i said in ur support....well to start of with....3 points made clear by Rom ...and thats essential we all would love to see those emg/ncv,mri,scan etc etc reports that have driven u to such an supportless condition(no fun intended)....second which great or greats of all the neuro's u encountered with please do let us know and what was their view on all this...i guess that would be enough for some support after moving on from here we would talk of some more support.

HUGS HUGS...KISS KISS
 
I've been following this story also, and I was surprised at how much it mirrored what is going with me in terms of speed of progression and atrophy. I was hoping so much that it was a false story. The only reason I believed it was possible is because I have also gone from feeling sick/twitching to seeing weakness in my toes/pinky to now atrophy that is obvious to others in my foot/ankle and wrist/hand on my right side in such a short time.
I tried to take comfort in Wright and other's posts about the normal EMG, but then I heard that in early ALS, emgs can be inaccurate and should be followed up in 6 months. I would love to be relieved, but every day I see my atrophy, feel the weakness in my hand and foot, feel so nauseous, feel the fasics, and now, have my legs shake when standing too long or waking up in the morning, I know - just KNOW - that there is something very wrong. As far as everything progressing so quickly - things must have been going on for quite a while in myself but I did not notice. As many have said, it's initial presentation is insidious.
I am sorry for ama's situation, if it is in fact true. I have contacted the UW neurology appt for a second opinion, but they require a referral. I have not seen my GP since the atrophy started, so by calling her, she is reluctant to give me a referral. I would think any decent physician would be willing to refer her patient. I have offered to come in and let her see for herself what is happening, and I have not heard back yet...I can't be satisfied with my neuro when he dismissed my atrophy as "come back in three months" and didn't even tell me that not having any reaction whatsoever to the Babinski is NOT a good sign (I had to look that up myself). I assumed anything besides positive Babinski was normal. He didn't tell me that on my first visit, and when I asked him about it this last time, he just shrugged and said nothing. Shrugging off these things make me certain that I do need someone who has actually seen ALS.
 
Miss91, yes it is too bad that most insurances require referrals to get second opinions or even to see specialists, and then once you get the referral it can take ages to get in (at least for many of us). I had to wait almost 3 1/2 months for my movement disorder specialist (neuro who specializes in Parkinson's among other things).

I don't know where you read that emgs are inaccurate in early ALS. I don't usually comment on the ALS diagnosed process because I don't have it and only know what I do know from being on this forum for a few years, so someone will correct me if I am wrong, but I understand it in this way: By the time you are symptomatic with LMN signs, if you have an EMG the results will show it, if the person doing it is competent and I suppose the equipment is in working order. The people on this forum go to a great deal of trouble to debunk this idea of clean EMGs when you have LMN signs and really do have ALS. If you only have UMN signs it makes sense the EMG will be all clear and then later, if LMN issues develop, the EMG will corroborate. (I am only offering these comments to spare those that always respond. I have learned this much and if I can help bear the burden of responding to the newbies I will do what I can). If you haven't done so already take some time to read the entire forum from start to finish (it takes a while).

As for the no response at all to the plantar reflex test, it does not mean anything bad. Where did you see that it does? I never have any response whatsoever, so believe me I researched this like crazy and have not been able to find anywhere that having a lack of that particular reflex is some ominous sign of UMN issues.

I understand you don't feel well, and believe me I understand, but there are so many other things it can be....even just a viral infection wreaking havoc.

Take care,

Lydia
 
miss91,
The following is based on my experiences.

If you insist to doctors, "I am sure I have ALS", they will be much less cooperative (and may assume you have a psychiatric issue no matter what your body shows). The best strategy IMHO is to be very calm (to defuse the "anxiety issue"), talk only about the symptoms, and ask the doctor questions.

Also, if you can go to a local neuro that trained at UW, then he/she might refer you into UW if he/she is stumped. And as far as your GP goes, don't wait for them to decide you should come in - just make an appointment and force the issue.
 
Miss91..well first thing first if it is progressing that quickly it can be anything but not MND/ALS....as far as the scene with motor neuron disease is concerned there are few strict criterias to look at....if u have had an EMG and it came out neg u dont have it...as the fasciculations ,fibrillation(any sort of spontaneous activity) are caught by EMG long before u even know u have them ,and these are classic with LMN which u say u have(fasics i mean).so in that case your emg would have definately been POSSITIVE and it doesnt matter how early or late u have it, coz if u are having the fasics and they are due to MND,neuropathy,myopathy or any such reason it would show on ur EMG.
As far as ur weakness is concerned u must have been evaluated by ur neuro regarding it ...as they usually do to get an estimate of UMN symptoms...and if he would have found something would have told u for sure ....ALS is bout seek and exclude till u have nothing else to exclude as far as the symptoms are concerned and u can not attribute it to anything else(as the causes of ALS are unknown).
Currently there is no single diagnostic test for ALS. Clinical diagnosis depends upon a history, physical examination, and laboratory and radiographic evaluation that is consistent with ALS and excludes other diseases that may mimic ALS( with a combined presentation of both LMN & UMN symptoms and lack of exclusionary symptoms)...and even then there are variants.
so as far as that second opinion is concerned,sure go for it if it calms u down ...and just to let u know i have had and possitive EMG with bodywide twitching for over and year AND I DO NOT HAVE ALS.
 
miss91, I agree with most of what Lydia has said, I am also one of the undiagnosed, all of my symptoms started after a sinus infection I had, I had twitching all over, when I sat done I could see my thigh and calves twitching. Have you been tested for Lyme? Two of my toes on my right foot appear to have atropjy, I cannot move them at all anymore. Do I know what I have, no I don't. but it is not als, so are so many other things it can be. In the last couple of months after a course of doxy for probable Lyme, my twitches have almost subsided, I still have some weakness and I still cannot move 2 toes on my left foot. It is not getting worse, nor is it getting any better. What I am trying to say that your symptoms might just disapear by themselves and there is that possibility that you will never know what it is. Also have you had your Magnesium level checked, that also could also cause twitching and taking extra magnesium is a quick fix. I also had cramping in my legs at night, but now I sip on some tonic water and that also has improved. Try not to worry(I know it is hard) and just try to take one day at at time and try not to let your worries comsume you, Margaret
 
Hi, I think I read it on this site that having no Babinski could indicate that enough damage was done so that the limb no longer is able to respond with a reflex. It is the weaker foot that has no reflex.
I'm not trying to "convince" anyone as to what's going on with me - I can see it myself. I agree Rom623 about not saying "I think I have ALS!" because that does seem to make the Dr.s less inclined to take you seriously. I may have hurt my own case by telling my neuro that. It's also odd that I constantly have fasics, yet the EMG detected NONE, in any of the many areas he tested. How can that be, when I feel them ALL the time? It makes me wonder what ELSE he missed.
I posted my situation on an "ask the expert" website, that is where I discovered an early EMG could miss ALS (I have been searching for answers as to what's going on with me everywhere I can):

Dear User, Your question was as follows : I'm a 36 year old female. I am 5'6' and previously was a healthy 138 lbs. In the last 6 weeks, I have developed strong fasiculations and lost 10 lbs. My hand is noticably atrophied, as is my foot (both on right side). I have had no cramping. I have what I believe overall muscle mass loss, and my strength is diminished. I have seen a neuro 2 weeks ago, who forwarded me to an EMG appt. last week. The prelim. results were that they did not point toward ALS, nothing was terribly abnormal.My question is; how can I have ok EMG results when in fact I can see and feel the atrophy? Can an EMG miss early ALS, or does the fact that I've got fasics/atrophy mean SOMETHING should have shown up? I was tested in both legs, weaker arm, back, and neck areas. Thank you.Missy - PS, I am going on Wed for 'results' - formal results, of my EMG.
Here is Kathleen Costello's answer: Yes an EMG can miss early ALS and often has to be repeated after an interval e.g. 6 months. If you have atrophy of your right hand and foot then there may be other neurological or neuromuscular conditions that may account for this and you will need close follow up with your neurologist. Thank you, Ask The Expert Administrator

Even SHE says close follow up with a neuro is recommended. Wheeler, I do not have Lyme.
Basically, I just want some answers from a qualified neuro who has seen ALS, and can see me and what is happening.

I looked at my EMG report again, the first page has tons of numbers I do not understand, the next page has categories where everything says only either "0" (fasics and fibs) or "N" for normal. It only took him an hour to do all the areas and they had told me to plan on 90 minutes. So who knows if he rushed it.
 
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ama~

I am un-diagnosed as well, and I had mild UMN (brisk reflexes, +jaw jerk, hypergag reflex, but gag normalized, jaw jerk stayed the same) and LMN (muscle thinning in feet/calfs/thighs & hands/forearms with global twitching) and weakness. When I got to my als specialist at teaching university Hospital, she didnt think ALS. And, I will say in your defense I got into all my appts within weeks, I didnt take no and I have great insurance, never needed referral. Anyway, I had alot of mnd sx that had me worried. She had to do an hour and half long clinical, then emg, then we did full mri of entire spine and brain, then a muscle biopsy and gazillion amounts of blood work BEFORE she would even throw at a guess at me. Too many things that it could be. Most reputable doc's wont say anything or what are thinking until tests are in. And you should try not to worry untill you have had all your tests done. I know it is hard, with abnormal emg. There are some un-diagnosed on here that have had dirty emgs and alot more sx than you and still dont have diagnosed. Dont know if that helps.

I think you should ask for a copy of emg and records of your clinical exam. They can be faxed or picked up in a matter of minutes. THese are yours and you should have them with you anyway. You should post or PM the result and see if Wright or someone can help you. Maybe there are things on there you didnt know about with clinicals and/or emg. Not that anyone on the internet should super seed your doctors opinion, but it may help clear up a few things.

*Did you have someone with you? IF not you must in the future. I always brought my husband, or mom or sister. IT helped since I was so nervous and may have misinterpreted things. My person would say, 'no, thats not what they said or ment", or "I didnt get that impression". They can hear and listen, and may ask a question that you didnt or hear an answer in a different light. WHen we are so anxious, we can read into every little thing they do or say, so that makes our judgment questionable.

Best wishes,

april
 
Ama

I'm not going to comment on your tests or situation until you give us all of the facts. I just need to know the full story to give you a more informed opinion. There are too many things being left out and too many vagaries. I'm not accusing you of lying. I just need the full picture. Could you give us the following information.

When you first noticed weakness . . . when you first noticed atrophy . . . where the atrophy is . . . exactly when you got your first EMG and if it was indeed an EMG or just a nerve conduction study . . . when you got your other two EMG's . . . when you saw each of your neuro's, etc., etc. Posting the results of your EMG's would help a lot, because then I'd be able to see which nerves and which muscles were tested.

Missy

The only way an EMG would be clean early-on with ALS, is if it was upper motor neuron onset. Kathleen Costello fails to mention that and probably just repeated something she read on the internet (only half of the information was presented). You don't have any upper motor neuron signs. All of your symptoms are lower motor neuron symptoms and would have been picked-up by the EMG if they were due to ALS. I don't know how many times we need to tell you that, because there have been at least a few that have. Please listen.

As far as your reasoning behind the Babinski sign: if you lost any reflex due to muscle weakness, you would have the type of muscle weakness that would cause the loss of use. As far as you said, you are still very able bodied. Again, when you're reading things on the internet, you are obviously not getting all of the information and/or not understanding it.

It appears that the only way you're going to get any peace of mind is to see a specialist, because you're not listening to a thing anyone on here is saying and you're not listening to your current neuro. I wish you luck in that quest. In the meantime, I stand by my opinion.
 
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