got my records, wright or anyone--need help

[awieleba]

HI all,

I have been 'trying' to keep a low profile and not over stress or annoy anyone! I am trying to do the best I can and keep postive per my tests.

Anyway, I finally got the emg/ncv and biopsy report to read myself since my als spec. wont tell me things.

The emg was normal all across and down on all muscles.
ncv was fine expect a martin gurber ulnar thing. I had an increased cmap on ulnar at elbow, redone in anther place and the amptitide was better...not concerned about that.
SUMMARY :normal exam. there is no evidence of generalized denervation to suggest motor nueron disease/ there is no evidence of large fiber polyneuropthy, mononeuropthy, radiculopathy, or plexopathy of left lower limb or right upper limb

My reflexes were 2 of 4 all over. *although my reflexes seem worse, that was back in may and they are crazy now. If i put my hands down on thighs to laugh, my leg kicks out.

*more important is the biopsy. the diagnosed was:skeletal muscle with scattered moderately atrophic fibers.
*sections show skeletal muscle with occasional scattered, moderatley atrophic myofibers. no necrotic or basophilic regenerating muscle fibers are seen. no inclusions or other sructural changes are noted. no inflammation is seen, and the endomysial connective tissue does not appear inflammed

the modified gomori trichrome stained sections show no evidence of ragged red fibers or abnormal cytoplasmic inclusions. the nadh shows a normal organellar pattern in light and dark fibers. the atpase stains at ph 9.4, 4.6, and 4.3 show type 1 fibers intermixed with type 2 fibers, with type 2 fibers predominant. subtyping is present.

1-is subtying the same as fiber type grouping or goup atrophy?

2-I did research on the biopsy and learned about type 1 and 2 fibers etc.

*****when I researched in the book 'fundamentals of neurologic disease' on page 72 it states that in the begining of als that there would be scattered atrophic fibers and then as it continues to breakdown it turns to group atrophy etc. ( I am over simplifing what it said)....OK, I am really upset about this! My als spec said that my biopsy was 'good news', really..how is that? she did not say anything abuot this, wouldnt she know?:roll:

and my emg says no neuropthy, so that atrophic fibers cant be from that.

I just feel worried more than ever and my symptoms are getting worse as far as muscle pain. My back is now in pain along with my neck muscle and my jaw. My feet are so thinned out and bony that my feet and ankle feel strained all day. My hands, mainly my thumbs and pointer fingers ache non stop. I feel that I am getting weaker for sure. ALl that I do is getting double hard. I may post my hands to see the atrophy, it is scary to me and VERY notable, I am not sure how my als doc can dismiss it. When the wasting b/w thumb and finger happen does it hurt when using. mine hurt and ache. I have twitching in feet and pain when walking.

I feel I most have this in a slow progessing way or a varient. They have given me no other options as to what is happening to me!

Is it time for anther emg? last one in May? I think I may switch from the als universtity to the mda/als clinic. there is one in my area. I feel very lost. Its a beautiful day and my family is out on the golf cart and I am here becasue my back and neck hurt so bad and I just want to rest.

Thanks to anyone who reads or offers in put. I know we cant diagnosed each other, I just need to put this out there and get off my chest.

sincerly,

april
I am so sorry I dont want to be that nervous poster that wont stop, but I keep waiting to get better and it gets worse.

 

[L4dybugg]

So sorry April. I understand the not knowing, it is agony, especially when things keeps getting worse, and still no answers. Hope that you feel better soon. Take care of yourself. I will be praying for ya. ;-)

Hugs Lori

 

[jennibf]

Don't worry, I think I am in the lead for the new nervous poster

I really don't have advice but I did want to post to you and say that I think I would go to the clinic, too, if I were you. We are the ones living IN our bodies and to have a good quality of life is important.

Is that your baby? I am a mother also and there are so many things I feel I am limited in right now and when I push and do it the neck pain is horrible. I do not have as many symptoms as you and am curious as to how long this has been going on. Please send me a PM if you are not wanting to post much here.

Anyway, can you post pictures of your hands?

thoughts and prayers,

jennifer

 

[suzannj]

Hi April,
I'll try and send you a pm later too . . . pretty sick at the moment, I think I'm heading toward pneumonia AGAIN Today my family is out getting pumpkins, etc. and I'm home on the couch.

I'm so sorry that you are reading such disturbing things from your biopsy, and that you're getting worse. I agree, go and get a 2nd opinion, "I don't know" is NOT good enough from any doctor especially when you are the one that knows YOU the best and if you don't feel 'right' then something is definitely wrong! How frustrating.

Okay, time to hit the couch agian . . .
Suzann

 

[wright]

Hello April

Sorry you are still so worried about ALS. Maybe I can help calm you a bit.

First of all, I'm not sure when you had your EMG, but it was clean as you stated. If you were symptomatic and had lower motor neuron symptoms while it was administered (and it was clean) that points away from ALS.

I think your muscle biopsy is what is actually giving you the most concern. I don't know when that was done, but if it was done while you were symptomatic (i.e. had lower motor neuron symptoms) and all that was shown was scattered atrophy, then that is a good sign. Scattered atrophy could be a sign of denervation . . . but it is a sign of acute denervation (more about this below). It could also be a sign of myopathy, by the way.

By the time you have lower motor neuron signs (if they are due to ALS), the muscle biopsy would show acute denervation (i.e. scattered atrophy) and reinnervation (i.e. fiber type grouping). Reinnervation would have taken place by the time you had any lower motor neuron symptoms. There was no mention of fiber type grouping (it would be explicitly stated). Group atrophy (not to be confused with fiber type grouping) is something you will see in advanced stages of ALS when reinnervation is not possible because so many motor neurons are lost and thus reinnervation cannot keep up with denervation.

All of that is why your neuro told you that the muscle biopsy was "good news" because it pointed away from ALS. If I were you, I would get another EMG . . . and not because I think you have ALS, but because it might now shed some more light on what is happening to you and alleviate your fears.

Let me know if I can be of any more help. Take care.

 

[awieleba]

HI Jennifer

Hi, I dont care about posting here, not shy. Yes, that is my youngest daughter. I also have 2 boys-7 & 4. I do push myself with them and all that goes with being mom and I am paying the ultimate price this weekend.

My symptoms are hard to pin down. Its a long story. I was pregnant and then got some serious infections and was in and out hosp. but what got my attention was the thigh weakness & twitching wich started in...I dont know, maybe march? after the baby last november I had a ton of aches and pains all through my hands and feet and knee-I thought arthritis. I felt different in the last trimester of my pregnancy. In hindsight I was weak for ME, before twitching. so maybe it has been less than a year and twitching for 7 months. the twitching was worse in the spring and has calmed a bit or I may just be getting to use to it?
I will try to have my hubby down load camera. Not feeling well today, short of breath etc etc.

suzann-
I feel for you, I got pneumonia with pleusey in april and ended up in the hosp. for a week! I think my sister gave it me, she gets walking pneumonia every year it seems. or I got IN the hosp with my daughter, anyway-take care.

 

[awieleba]

wright,

Thanks for your comments. It is hard to know what is going on in someone's body. I feel that I went to the doctor and the muscle biopsy too soon. I have alot more symptoms now then I did then. I do think that when the biopsey was done i had the atrophy on my hands and my one ankle. I just did not like reading that scattered atrophy would happen in the early stages of als. The biopsy did not say if the fibers were round for myopathy or angular for neurogenic, would that mean that they are neither or it just did not say. AND if the emg said NO neuropathy, then why would my biopsy indicate the possiblity? I will get a new emg with a new mda doctor, this one was quick to dismiss...

 

[wright]

April, why don't you give us a brief timeline of what has happened (when you noticed weakness, atrophy, etc.), along with tests done and when they were done (i.e. if the EMG was done when you had atrophy and on what muscles . . . muscle biopsy and what muscle it was taken from and if you had atrophy, etc.).

You have had so many things happen to you with so many other ailments, that it can certainly take a toll on your body and manifest in all kinds of different ways. Furthermore, I don't want you to think that just because you continue to progress, it means you have ALS. Many, many, many diseases and syndromes are progressive. Oh, and by the way: those same diseases that do progress can be stopped and reversed as well.

Bottom line: I think you should get another opinion and let someone look at you with fresh eyes. I don't think you should put it off because you are obviously worried and worry will only make your symptoms worse. The quicker you get re-evaluated, the closer you will come to answers.

Take care.

 

[awieleba]

thanks and I agree. I put off going back to docs, I think it is time.
thanks for your time, I see you have been busy today..

timeline is hard becasue of the pregnancy and infections for weakness but I did have leg weakness forsure when the emg was done and thinning of muscles when biopsy done. A new emg should be ok for now, we will see where it goes........

 

[rose]

April, I don't have any input on your medical records or test results. I just wanted you to know that I've been thinking about you. I did notice that you've been absent a lot on the forum, but was hoping it was that you were feeling better.... how are the Halloween costumes coming?

 

[awieleba]

Rose,

I bought the costumes a month ago! I was in target and there were only 2 left. Star wars will be big this year. My son HAS to have the storm trooper and the other one darth vadar. I did not want to let them down. I am usually that mom in the frantic last 48 hrs trying to get it done. They have thier suits open and laying out on there top bunk beds, it is sooooo cute. I will put up photos after halloween! they were going to have little gracie go as yoda, but I could not find one to fit, oh darn. she is going as a dalmation but will be in the house with me anyway.

I saw your sleep study photo! very interesting. I may need one, but I cancelled my appt with the lung doc., I did not want to hear anything bad.... I am nervous to have someone 'watching' me as I sleep. Could you even sleep?

 

[jennibf]

April,

I saw the gorgeous pictures of your children. They are adorable! And YOU are beautiful yourself. Funny how we can feel so crappy but not "look" sick...which throws people off. I know firsthand from my heart disease that so many people, family included, could not understand why I didn't look bad. I'm not sure how I was supposed to look? haha

What do you think the neck pain is from. A doctor told me that the pain in my hip and neck could be my muscles are tired from holding up my head---it's a normal size head---and my hips tired of walking, bending, etc. Have they said anything to you about the pain? I don't get what the pain is from if it were to be ALS?

Continued thoughts and prayers and my daughter is going to be Pikachu. Last year she was Spiderman. I should have dressed her as a princess or something when she was little while I had the chance.

jennifer

 

[awieleba]

kinda scary that I know what pikachu is! thank you for your comments on my family. it is hard when you dont 'look' sick but I like it becuase I dont want anyone to know.

I have had neck pain for a long time. on my cervical mri there were 2 slightly buldging discs so maybe it is that. My back pain, not sure. It is muscular I know. ANd it is bad, I think from a 6 hr walking field trip with my first grader, I have been paying the price all weekend. but my neck has come and went and it is different this time. I just cant walk that much but I had to do it for him, I save all my energy for them.

take care

 

[rose]

April...

Re; the sleep study.

What a picture, right? ~ that alone is an explanation why its not practical to expect a good night's sleep for one of these studies.... Don was away on a working trip and had said to bring the camera, so... why not share on here...?

I slept better this time than the previous. The technician was reading the notes from my original study which said I'd barely even qualified as being asleep. She said it was really more what would be considered "dozing" as I hardly ever made it into REM and not once to a deep sleep stage. However I am light sleeper, and it was fairly noisy during that first study.

If you have breathing difficulties that you're aware of at night, or are having headaches induced by sleep, then it would be wise to pursue it. as a lot of information can be learned by just a few hours of sleep. All of my doctors have been emphatic about this.

I'm looking forward to seeing some photos of your kids!... I miss that, its been a while since I had any involvement with my kids costumes (although I did do a "phone" assist last year with my daughter who was dressing up for work that night LOL)

.... last year I even had a party, and wore my standard "pirate wench" outfit. No plans (thankfully) this year

 

[awieleba]

rose

I wake up all night long with out a sleeping pill. not sure why, my sister does the same thing and my dad. turns out after my dads sleep study that he had apnea and uses some kind of 'pap'. if i take my pill, i only wake up 3x. but, i think i go to rem because i have the most vivid dreams, is that rem? I am sob alot, i have to really take a big deep breath in to feel good alot.

halloween is going to be a blast this year, tons of kids parties and adult poker parties. our sub has a hayride before tricking and we all decorate our golf carts scary and follow the kids. after this year my good friend and I are having a kids party at her house with a spookey magician!