EMG was Clean muscle biopsy showed minimal amount of denervation with some reinnervat

[shawnh]

Ok yes I know that is the longest title possible! I will give an ever brief summary because I know your time is valuable. I have psoritatic arthritis, had it for 8 years, no meds for it, in July started having calf pain. Then quad pain then tricep pain. I say pain its more like i have done 500 squats and 500 calf raises. Went to a neuro not satisfied with her she wanted me to go to PT said it could be slight issue in lower back even though i also had upper body issues.

So went to a rheumy he thought it was fibromyalagia. Went to another neuro, a really good one this time. He ordered MRI's of neck, mid back, lower back. Neck showed some degeneration from arthritis, mid back fine, lower back slight disc bulges. He told me nothing he thought would cause these symptoms. He then ordered EMG/NCV. He didn't do it a pretty new dr did it BUT she seemed very thorough, she told me he ordered a very extensive one. It showed everything normal. Obviously I was very relieved. Had one done 2 years ago when my arthritis was flaring and my GP thought it might be MS. It showed minor neuropathy but this new neuro said it was incorrect and it was done only in calves and wasnt having these symptoms at all.

Went back for follow up in early nov still having the muscle issues. Basically i have figured out beyond the almost cramping feeling, it is if I fully flex a muscle, whatever muscle it is, it will cramp up after like 2 seconds. Muscles also feel tired. So he says really the last test they could do is a muscle biopsy, i figure i have tried everything else and met my major med deduct so why not.

I was originally worried about ALS as so many are in error and had come here and never posted and forgot about it with my doc telling me no als because of the emg. Well I get the muscle biopsy done in my calf 3 weeks ago today i call the office today and his asst says they have the results and he will look at them and call me next week. Well curiousity gets the best of me and i look at the surgeons patient portal and sure enough she had uploaded the results. Big mistake because I now have the report. I called the neuro and she said he would look at it and call me in a few. He didnt. I called back he had left, she said she would message him still no call now they are closed and i have to wait all weekend. Here is what the muscle biopsy said -

Final Pathologic Diagnosis - Slight neurogenic atrophy with reinnervation (see comment)

Comment says - There is minimal amount of active denervation with some reinnervation, the cause of which is not apparent in this biopsy


So when I look at the results the abnormal stuff says - there is increased fiber size variability imparted by the presence of randomly distributed rounded to polygonal atrophic myofibers interspersed among myofibers of normal diameter. A minority of the myofibers contain granular somewhat basophilic sarcoplasm suggesting mitochodrial accumulation. ATPase stains reveal a predominance of type II myofibers with some evidence of fiber type grouping. The acid phoshatase stain highlights granular positivity in some myofibers. The NADH-TR stain highlights an occassional atrophic myofiber. Sections stained individually and sequentially for cytochrome -c oxidase (COX) and SDH activities reveal scattered hyperintense myofibers in the SDH preperation and occasional COX-deficient myofiber in the combined prepartion. H & E paraffin sections reveal fiber size variability and rare atrophic fibers similar to those noted in teh cryostat sections.

Ok if you are still with me through all that I thank you so much. I know 99% of us have no idea what these things means just hoping someone can give me a little guidance or comfort. I don't have true weakness that I can tell, but something is definetly going on and when i google some of my results it comes back to early als on many.

Thanks so much again for taking the time to read.

 

[Atsugi]

Shawn, that report doesn't read like any "ALS" report I've ever seen. Plus, you haven't said anything that indicates ALS. In fact, your symptoms, "pain...like 500 squats," point AWAY from ALS.

Of course, I'm not a doctor.

The fact that ALS comes up when you google your results is meaningless. Really. Hundreds of people with no symptoms of ALS have been pointed to this website. Don't give Dr Google another thought.

 

[shawnh]

Thank you Atsugi! I know you guys deal with so many paranoid people and I am hoping I am another one. I really appreciate you taking the time to read that complicated essay! I had total peace and then boom this pulled me out of it today. I know better, as a matter of fact I was a pastor for a period of time and pointed countless people to trust in God and do not worry AND I am fighting that battle today. Thanks again and have a great weekend!

 

[Atsugi]

To many people, maybe most Christians, the phrase "Trust in God" means not to rely on science, as though scientists are the enemy.
In fact, our church convinced our daughter that her mom wouldn't have ALS if she just believed strongly enough. They said she was going to hell for that lack of sufficient faith.

If you must believe in a Christian God, try to remember that God made doctors and scientists, too, for good reason.

 

[shawnh]

Oh I most certainly believe in God BUT I go to many doctors. That sort of false doctrine is horrible and I am so very sorry that happened to your family. The Bible is filled with hope but its also filled with suffering and to tell you that is so NOT what true faith is. Once again I am so sorry that happened.

 

[melbellred]

Hi Shawnh...
I totally can relate to your fears. I've had two abnormal biopsies now and been told by one doc that they are consistent with ALS but I "don't have the symptoms." I've had weakness for years with fascics. But not profound weakness.(like I can't run...and I fumble things with esp. right hand.) Now I feel atrophy is showing in hands and arms and I'm going to Neuro again in a week. Also I've had 5 normal emgs. I'm also biting tongue, and inside cheeks, lips. I think I'm a strange case.
But I hate not having a diagnosed...cause I know something is wrong and I have horrible fatigue. I've been diagnosed with bfs and small fiber neuropathy. It drives me crazy. I'm not sure about your biopsy. I've been told mine are nonspecific but I know they have some elements that are consistent with ALS. I think if you have symptoms to go along with a nonspecific biopsy then it can mean something. You are right about your response to Atsugi. God uses all our talents...including doctors to do his work and the experience with that church was not a true Christian attitude. I'd like to hear what you find out from your doctors. Also....does anyone know if a neuro would take seriously 1 cm. variation in arms. The phsiatrist measured them for me because there's a variation and I can see wasting. She told me they allow 1 cm. then it's considered possible wasting. ..but I feel like it will be ignored again. I've read online that 1 cm or more is considered probable atrophy. Melbellred

 

[Atsugi]

Abnormal biopsies point toward "something wrong" but not necessarily ALS.

ALS doesn't happen unless there is nerve destruction first. That always shows up on EMGs prior to symptoms.

Fatigue is not a symptom of ALS. In ALS, your muscle simply, inexplicably, doesn't contract. There is no feeling associated, no weak feeling, no exhaustion or fatigue.

In ALS, nerve damage comes first. That damage is in the brain and brain stem. Those nerves are the motor nerves which send signals to the muscles, ordering them to contract. There's no damage to the sensory nervous system which detect "feelings." So the muscle, usually the foot, simply doesn't work. After the foot has been paralyzed (limp and useless) for awhile, it may get smaller (atrophy) from lengthy disuse.

If this isn't happening, you don't have ALS. You might have a nonfatal neuropathy, but not ALS.

 

[melbellred]

Thank you Atsugi for your response. It's so nice to talk to someone about this. I think I'm fatigued because it takes so much more energy to do the simple things. ...but I do have weakness also. I do not have regular neuropathy...only small fiber neuropathy in skin of my legs...so they say it would not cause weakness. I truly don't know what it is but I have heard of people with bulbar that have normal emgs and normal emgs when ALS is developing. I've racked my brain and read a lot trying to figure out what diagnosed my symptoms fit into. I know the atrophy is progressing because every few months I'm seeing more areas sinking in. My thenar's have flattened and I have the typical split hand syndrome in one hand. Now I have the variation between arms and they've both thinned. Both biopsies showed angular fibers with fiber type grouping, one with neurogenic atrophy..the 2nd with myopathic changes. I had to resign from my job because of it the weakness. I've been yelled at and scoffed at by doctors over this. I'm hoping my coming appointment will give me some closure. melbellred

 

[shawnh]

I agree Atsugi is so helpful! I hope you find the answers you need quickly melbellred. I think through further research on my muscle biopsy it just lends to further confusion on my end. The EMG should have found the denervation with reinnervation. It didn't so I am wondering if I could possibly be at the very early stage of onset. Obviously I sure as heck hope not. Then I read others who say clean EMG = no ALS ever I just cant seem to find anything that says any other condition causes denervation with reinnervation. Regardless hopefully the Neuro can shed some sort of light on this situation IF he calls me on Monday.

 

[melbellred]

Yes Shawnh.... Thanks for responding. I'll be thinking about you on Monday. Yes I've read also about Denervation and reinervation. One thing more though is that there can be false positives at times in muscle biops esp. Calf muscle. Will you put what you find out on this thread so you know. I'm brand spanking new with this and I have trouble finding my way around. melbellred

 

[shawnh]

Ok the neuro finally called me back at almost 4:30 today. Told me he was on call all weekend and apologized. I really believe he cares and he is very competent. He said he is confident I don't have ALS, he wouldn't rule it out, but I think he is one of those guys that understands the one in a million cases and wouldnt ever rule anything out so to speak.

He says he doesnt really know, told me we were looking for a zebra before now we are looking for a unicorn lol. Said next up may be genetic testing but said it was expensive and most insurance doesnt pay for it so he wants me to see someone at UT Southwest. He said they are great and it takes months to see them but he would try to use his influence to get me in.

So pretty confident no ALS. There is the update. Appreciate all who have read my posts.

 

[melbellred]

Sounds good shawnh! All the best to you. My big appt is next week with the neuro. I'm anxious to see what he says. melbellred

 

[skipper66]

Good luck to you both. Hoping you get good news and help with your health issues.

 

[shawnh]

Thanks skipper I really appreciate that. melbellred will be thinking of you, update me how it goes.

 

[melbellred]

Well...thanks shawnh for telling skipper I'll be thinking of them. ....I hope you know I really was thinking of you and nice to meet you skipper and thanks for the encouragement. I'd never done any forums really and it's nice to talk to some different people online besides my good friends that I see frequently. Melbellred