Seeking Insight on Arm Weakness Post-Surgery

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onWidgeon1989

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Hiya~! I know you’ve seen it all – and have wonderful insight! I've read the forums since February and ya'll are a wealth of knowledge, inspiration and a fair bit of fun! Could I impose on having you read my story and give me your thoughts?In February of this year I had lower back surgery (decompression of L3 & L4). A few days into my recuperation I noticed that my arms felt "heavy" - certainly not normal. I thought it was something to do with the surgery - and mentioned it to my surgeon. He had me get an MRI of my neck - which came back clear. I thought it might have been a reaction to a medication - so I stopped taking it but it didn’t help. Then I started to get muscle cramps in my legs - which have abated over time.They’ve now scanned all of my kibbles & bits (including my head) and they all came back clear. The surgeon sent me to a local neuro - who did an EMG of my arms which came back showing some minor issues - which he called a Peripheral Neuropathy - but didn't think it was ALS. <SIGH>The "weakness" / "heaviness" has continued to slowly get worse. In about June (?) the twitches started - legs mostly. Went back to the doc and he did more blood work which came back fine - and he referred me to a specialist in Seattle. In the interim my arms and hands have started to burn at times with exertion. The heaviness is more pronounced and has migrated to my shoulder as well. It’s been continuous and has never gone away – even for a moment.SO – the ALS specialist in Seattle (he’s also a researcher) spent three hours doing physical tests and a very thorough EMG. His findings: It’s probably not a peripheral neuropathy Some slow reflexes (I believe this is the opposite to ALS) Subjective muscle weakness Some nerve damage in my legs (possibly from the surgery / but maybe not) Mild Myopathic Changes Minor carpel tunnelHe’s requested that I have a muscle biopsy – which should be done in a few weeks – afterwards he will meet with me again.He said that based on my chart BEFORE he saw me - I sounded like an ALS patient. However, after meeting with me and all of the tests and a thorough EMG he said that he was less convinced that it was ALS - however he couldn’t rule it out – so he wants the muscle biopsy. He said potentially it could just be too early for a definitive diagnosis or the progression is really slow… eek!The twitches don’t bother me much – but the continuous heaviness / weakness is really scary (goofy kinds of scary). I’m still able to do everything I did before – but in the back of my mind I keep asking myself is it just a matter of time… I try not to think that way – but the thoughts are persistent and very invasive.Thank you for taking the time to read this!! What are your thoughts???
 
Hello Sam, I've read your post a few times and am not sure what to say, but am compelled to say something. It sucks to be in limbo but encouraging that your neuro thinks you are clean. You have been through a lot already this year. Your weakness started as bilateral which I think is uncommon for the uncommon disease of ALS. There is a woman here JRO who has had a muscle biopsy, not sure what ever came of it. I know a neuro doesn't need a muscle biopsy to determine ALS. Your EMG, I take it that your arms were not clean, did the neuro see Fibs and Sharp Waves, slow recruitment patterns? What about your legs, how were they on the EMG? For me I thought my one arm was getting weak, and it used to feel heavy at least in my mind. It is psychologically devestating to wake up every morning wondering if your arms are going to work. Its very difficult to get that doubt out of your mind and really the only thing that helps other than diverting your mind to something else, is time. I had a clean EMG which for me was very reassuring. And now after 8 months, I have no loss of ability, my arms are stronger, but I still have quite a bit pain esp a few days after exertion in my shoulder and some tremors. My arm would sometimes burn after exertion like yours, but not so much anymore. Holding up the phone a certain way used to really get my arm burning, but for me its gotten better. Anyways, post what you care to, we are pulling for you SamWidge in the Emerald City. Sincerely, JoggingCub
 
Sam,Its hard when a post like this comes along because it doesn't warrant an automatic "your fine" response...you clearly have issues other than the twitching.All I can say is that from everything I know about als(not a doctor) it seems that with an emg it would be a clear cut case after this amount of time...I dont know about your results or what age you are but it is really a very rare disease and you can look at the facts that:There was a clear reason why this started (ie your surgery)Slow reflexes not briskSUBJECTIVE weakness...as far as I know weakness in als is everything but subjective.If you can still do everything you used to then this is a VERY good signI don't know maybe some old timers could chip in here.Like RB said we are rooting for you and I truly and honestly believe that if you made it to this site then you don't have als. I also truly believe that if you pass a neuro exam especially a three hour one then it is not als. Because of this I can only imagine that:You are between 50-60 years old, or you have familial history of als otherwise the doc would have dismissed it.Take heart from that and remember in cases like this the doc has to cover his own ass.Regards,Darragh
 
Thank you all for your kind words - I needed them right about now.Running Bear - My arms were not "clean" - I can’t remember exactly what he called it - except that it wasn't what he was hoping to see. I called his office, and they are sending me the entire report tomorrow. I will go over it, and see if it brings any additional clarity. He mentioned that my legs showed nerve damage - it could be related to my surgery though - although I'm not sure how. I have a lot of questions for the doc - but after three hours I'm afraid he ran out of time.The weakness in the arms really is the worst part... I find myself waking up in the middle of the night and wondering if my arms are going to move...Twitchinstinks ~ I was on the DWLZ forum :) You have an amazing memory! But it's been a long LONG TIME I'm sad to say. From time to time I hear from Julie & Mi - but it's been ages... perhaps it’s about time I drop in on those good folks! What was your user name there? I'm sorry about your arms! I hope they're better!ionyZarrion ~ I'm 43 <eek> I have no familial history that I know of in regards to ALS.Again, thank you all for the kind thoughts and words! Tomorrow I will post his actual report.Peace.Rob.
 
So Good to see you on here. :D) I can't remember what my DWL name was at the moment something like weightnomore. I remember your screen name due to the orginality. I said I wonder if this guys name is Sam Widge? he he.I remember your name is Rob. I have a few questions and I know you are going to post stuff today about your report but some of what you says sounds like us and other parts don't. 1) Were you in the military? I am thinking you were for some reason. 2) DID THE WEAKNESS START IN BOTH ARMS? From all I have read it always starts in one limb. It doesn't progress to the other limb until its done with your limb?3) Have they tested you for lyme's? I am sure they did.4) Have they mentioned MS? MS can do a dual limb. 4) I know this is out there but one thing I stumbled upon was a treatable disease that is so so so rare it is never on the neuro's radar. The disorder is Transversal Myelitis.It has some of the same symptoms that you have but I don't know what all you are telling me. People with it report bilateral weakness almost like MS and heaviness. You got this after your back surgery and I read a couple of cases where this happens..Keep your chin up and I said a prayer to you last night and today... By the way ..... This whole thing started for me after a crash diet.. A bad diet.. One that Dottie would frown on.... I know you are into dieting so I wanted to mention that.
 
Well... I think I feel better after reading the doctors report... no, change that... I DO feel better... :)This is what it says - any insight is gratefully appreciated!"Description of FindingsThe results of the nerve conduction studies are abnormal for prolongation of the right median transpalmar mixed nerve peak latency relative to the ulnar with both measured at 80 mm.The results of the EMG studies are abnormal for: 1) fibrillation potentials and positive sharp waves in the left gastrocnomius, 2) an increased incidence of large amplitude or long-duration motor unit action potentials (MUAPs) in the left gastrocnemuus, first dorsal interosseus (FDI). biceps femoris, and bilateral T9 paraspinals, 3) reduced recruitment of MUAPs in the left vastus medialis, gastrocnemius, and T9 paraspinals, 4) an increased frequency of small amplitude or short-duration MUAPSs in the left biceps brachii, and 5) early recruitment of MUAPs in the left biceps brachii and extensor digitorum communic. Interference pattern analysis of the left biceps brashii showed 3 of 10 points below the cloud. IPA of the left vastus medialis, extensor digitorum communis, and FDI were unremarkable.Impression and Conclusions:These abnormal electrodiagnostic studies provide evidence for: 1)mild myopathic changes in the left biceps brachii, 2) acute on chronic left S1 radiculopathy, 3) chronic denervation of the left FDI and bilateral T9 paraspinals, and 4) right median neuropathy at the wrist (carpal tunnel syndrome), This findings do not fulfill revised El Escorial criteria for electro diagnostic support of the diagnosis of ALS.Assessment /Plan:On my physical exam today, I did not appreciate any weakness, fasciculation’s, atrophy, or hyperreflexia. EMG/NCS showed mild right median neuropath at the wrist, but no evidence of peripheral neuropathy as suggested by the outside study. There was evidence of an acute left S1 radiculopathy possibly related to his recent lumbar surgery, but no other signs of active denervation that would suggest a more diffuse process such as ALS or other motor neuron disease. We cannot rule this out, as it is still possible that it could be too early in the course for signs to become more apparent. Labs from last month were unremarkable. He did have mild myopathic changes in the left upper extremity, and this raises the possibility of an alternative diagnosis such as myopathy. The most myopathic changes were observed in the left biceps, and will refer patient for a muscle biopsy."Then there were a couple of pages of numbers from the EMG - I'm not sure that would provide any additional insight, but I can post them if you think it would!Thank you again for taking the time to read this - you are very gracious.Peace.Rob.
 
Rob,I do not know enough about Neurology to comment on the results you posted. I can say that I know not everything is what is seems...so take to heart there are other things that can be going on other than ALS. I think, it seems, that you are already aware of that and your spirit seems quite positive. A very good thing. When do you go to have a muscle biopsy? Where will they take the biopsy from? Blessings,Carrie
 
Rob,From what little I know about and EMG, fibs and sharp waves are denervation, and MUAPs are renervation. But I could be wrong on this. There is something definately going on with your nerves here. I don't know if this is any help or reassurance, but my EMG had a MUAP in my leg. My neuro said it was nothing to be concerned about. There are others here who have had EMGs with Fibs - "Big O" is one and I believe he also had back issues. I like that your neuro did not "appreciate any weakness", I guess that means observe any weakness in neuro talk.SIncerely, JoggingCub
 
I like that your neuro didnt appreciate any weakness, reflex changes, or atrophy. These are things that are generally hallmark on presenting cases of ALS. So this is good in my opinion.
 
I am no doctor sam but I sure know a heck of alot about als and BFS and all the other scary stuff ....I too have been freaked almost all the way out of my mind over my neurological symptoms and sometimes still do get scared but !!! even though your story is somewhat different then others here your doctors say that they see no weakness or atrophy and something about it not fitting the criteria for diagnosis of ALS I dont know you from adam but I would bet every dime I have that ALS is not what you have and I dont think you will be hearing the dreaded diagnosis come out of any of your docs mouths yes people do get als its not like no one gets it but ...in my opinion focus your mind elsewhere and live your life the best you can sure follow up with the appointments see your docs take care of yourself but dont start filling out your will if ya know what I mean best of luck to you and you are in my thoughts I hope that you get the answers your looking for from the up coming tests and such but if not you are always welcome here to hang out with us unanswered BFSers PS think youll fit in just fine
 
Sam,I agree with Tripper. Im not a doctor and don't know anything about emg or its language. I do know that the problem with your nerves can be explained by surgery as the doctor said and that without clinical weakness after nearly 8months of symptoms then...well... you can breathe a lot easier.Accounting then for your other stuff like bi-lateral heaviness,no fasics, weakness or reflex change seen on examination, slow reflexes, pain and burning sensations...this stuff is not part of presentation of als.Lets face it something is up but without CLINICAL and progressive weakness(not heaviness or percieved) its just not als.Im am willing to wager that you don't have als and will be around this board long into the future sharing your experiences with others.Do let us know no matter what.Regards,Darragh
 
very good attitude rob that is the way you have to look at it no matter what ....its hard to stay positive all the time but the more you try the easier it gets ....good luck ...friend
 
Thank you again for your kind words.Sometimes life is funny. Today I felt really good mentally - my body was pretty much the same, but I had my head right, and I felt good. It was nice.About ten my wife calls, and her Doc called her in, and told her she had Lupus... It's really thrown me, its one thing for me to be off my game - but this really blows. We have five kids, the youngest is seven the oldest is 14. We have busy lives - REALLY busy lives...I would dearly love to say that I'm back to where I was this morning, but I'm just not. I'm painfully sad. If i'm really honest with myself, I can acknowledge rationally that Lupus is a manageable disease. What I have is a manageable something... but I just cant seem to let go of this weight.Peace.R.
 
Rob, I know that sometimes life dishes out more than we can handle and that sometimes it can really seem bad and there is no rhyme or reason for it. I don't know what to say to you except to tell you how sorry I am for your wifes diagnosis and for the troubles you are currently facing. I wish you could get back to a good place mentally as well as physically soon, but at least as you say lupus is treatable and can be managed. As for what you are facing like all of us on here you can only take it one day at a time. I will keep you and your wife and family in my thoughts and prayers and hope you find the peace and happiness you both deserve when all is said and done. Just know you have a lot of support on this board and we are all here for you.Mary
 
Mary ~Thank you so much for your kind words - I read them just before I headed to bed last night - and it was a real gift.Today is indeed a better day, the sun is shining, and life really is good.... I just have to keep my perspective right. I'm not sure whats going to happen days / weeks / months from now. What I DO know, is that I was able to get out of bed this morning - and that's a really good thing. Yesterday I traded anything that was good for horrible thoughts - that may or may not come to be. It was a pretty lousy trade.SO, today I'm putting on my big boy pants - and I'm goign to see what I can make of it.I read this today, and it made me smile:Mrs. Smith’s elderly husband doesn't feel well so she takes him to the dr. Mr. Smith leaves her in the waiting room for a while. Finally the Dr. comes and says, "Mrs. Smith I’m sorry to tell you that your husband is going to die." Mrs. Smith says, "Dr. is there anything I can do?" the Dr. told her "well there is a couple of things you could do: First you could cook him a wonderful dinner every night. Second you could give him a nice back rub every night. Third you could make love to him like you never have before every night." Mrs. Smith says ok. A little while later Mr. Smith comes out and asks Mrs. Smith "what did the Dr. say?" Mrs. Smith says, "I’m sorry honey but you are going to die."Peace.Rob.
 
Rob, I am glad I can help and glad you feel better today, thanks for sharing your joke with me that actually made my day. Don't worry we will all get through this together.Mary
 
Rob/Sam, I have had lower back surgery, ( L4/5) Spinal fusion to be exact. It does take a while to get back to normal, after the surgeon has been poking around. I would it give some time, may be a year or more. Symptoms quite possibly related. So take a deep breath and ride it out for a bit, and see how it goes.cheersRodger
 

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