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awieleba

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I dont know where to start or how I feel about all this. BUt I am sure that many on here can relate.

Well, I went to the neuro and I am ashamed to say that when she walked into the room I bust out into tears from nervous anticipation of the results. (this did not help increase her opinion of my mental state). The result showed scattered atrophic fibers. She said this was good news that there was no denervetion/renervation or group atrophy etc. So, you think that I would feel happy, well I didnt. It still is so vague and if I am sooo fine then why would there be any atrophic anything in there? Then my hubby chimes in that I use to be so phycially active that could this be due to not working out anymore, she said yes. She kept telling me that this biopsy and the emg are ruling out als and that she cant tell me that I have it or that I wont get it 10 yrs from now either. I said what about 2 yrs f=rom know and she said that she doughted it. Thats great and all but I asked her about the atrophy and she was like 'whatever"! I have had one other neuro and rheumy tell me that they saw the atrophy on my hand, thats where I got the idea from. SHe said 'well, I feel a "little" stong muscle in there'. OK. What about my leg, same thing, dont know. What about my fasic's...she said well I get twiches and my father died of als, but I dont worry bout it....OK.

I asked her to do a exam to check everthing again, she did. She checked for jaw jerk and no i didnt have it, no clonus. Did babinski, I noticed that my toes seemed like they did not move either way. She said they did and it's fine. Reflexes still brisk and I asked her what they were on the scale and she said 16! She wont tell me, I asked her about spacity or something esle with my reflexes and she said that she is not going to give me any more info then I have or teach me medicine. Are getting the picture with her.....She told me 5x in the appt that I need to see a therapist about my fear and anxeity. I think that she does not like that I come in with so much information and questions and it comes off as anxiety. WELL, of course I am anxious! MY health is failing me and no one can give answers! I am not sure if I should go to U of MIch instead? I think that I should get a copy of my chart to see what exactly is going on since she tell me. I think that she does not want to concern me anymore than I am. A person on her goes to see her and I know that she is good and see's alot als/pls pts. I asked her if i could have pls, and she said no, that I dont 'look' like them.

I asked about MG, cipd, gbs,polymoyosis, you name it. She said that MG would show on the biopsy and even in the emg. SHe did say about 10% dont. All that other stuff would of shown in the emg or in the biopsy. SHe is a very intelligent lady. I asked well can we try Mg medicine just to see if there is a resonse, she said NO. WHat about Ivig...NO.

I went to the rheumy again on her advice prior to the vist. He did not feel that the symptoms I have are rheumatic in nature. He had tested me for all that early in the year. He said he would re-do the tests as one was a little elevated (ace) for sarciodoisis and my dad has this autoimmune. I did research it and sometime you can get this in the muscle. He would re check lupus, yadda, yadda,yadda. Well, he did the point test for fibro and i had only 10 out of 18 tender points and most folks with this have a lot more pain when presed on, so he did not think this.

WELL, back to neuro. So at this point my husband kinda gets irritated at ME! He says to the neuro that 'is there anything that will happen if she stops going to the docter for 6 months? are we gonna miss a diagnosed?' she said no, and then he pretty much said that is IT, you are not going to any docter for 6 months not even to the pulomary doc! I was suppose to have a repeat emg in sept. I guess that I will have to wait. He is sick of it, well so am I! He says you just need to start exercising! OK, wish I could. MY muscle's will shake. Because this doc says no als, my family thinks that I just need a little exercise, well I would if i could. I have pain in my feet and ankle and arms and my muscle will shake and twitch after so bad that I dont want to feel it!

LOng of it short (yea right) The neuro px me to phyical therapy and to a therapist. So I am going to go PT. I think that they have a better Idea of atrophy and weakness, maybe they can shed some light. I am going to see a therapist about my fears, it wont hurt to have better coping tools. I am just frustrated, if I dont als, then I wish they could say 'ok, here is what you have' well they cant do it so How do you move on with no diagnosed and your symptoms are getting worse? she says that she still thinks that this all due to my body recovering from when I was sick and blah, blah, sometimes MCT disease dont show up.....

I guess I should feel good?

WRIGHT: do you know anything about biopsy result of 'scattered atrophic fibers' only? I am gland that she says good, but good would mean it is clean of anything. I just feel that since there is this going on that it has to mean something. Maybe even pma?

sorry to ramble, I think a normal person would feel good about this but it is hard when your body is not getting better.

any input would be appreciated on this, I dont know what to feel.......

april
 

rose

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April, I'm so sorry that you're this distraught! I can't help at all with the EMG findings, I think you probably know a lot more about that than I do.

The neuro could have had a better manner with you, that is so hard when we come across a lack of empathy, right when we need it most!

Here's what stands out to me:

** biopsy and the emg are ruling out als *** yay!

also,

2) "she says that she still thinks that this all due to my body recovering from when I was sick and blah, blah, sometimes MCT disease dont show up....."
That is important, being very ill takes its toll on the body. Plus, you have a baby that's not even a year old yet.

3) Autoimmune runs in your family. That's a strong indicator that this could be playing a part, maybe even a major role in what's happening now. Your illness could have stirred up the auto-immune response as well. Also, there is something called Myofascial Pain Syndrome that maybe could be considered. (A friend had sent me an internet link to a site for this last year, hoping maybe something would correlate with me, but it didn't). It sometimes takes quite a while for the blood tests to support an autoimmune diagnosis.

4) Physical therapy is a very good avenue. You're right that a physical therapist is going to have insight as to what is, or isn't atrophy, and ways to judge your progress or lack there of. You'll feel better if you're able to make measurable progress, and if you can't, then you'll have a professional that is monitoring your efforts and will be able to give a doctor his/her input as to what happens with you.

5) Seeing a therapist sure can't hurt. Extra coping skills, no matter what one is dealing with are going to be something that will make you stronger.

I understand the letdown in not getting a specific diagnosis ~ in fact, pretty much no diagnosis. It doesn't help with the fear of the unknown. But, your biopsy and EMG results are a huge win for you.

Don't beat yourself up over not being happy about what was said. It may be a gradual thing, as the days go by you may start to feel the reassurance from the wonderful test results. As far as the emg not being "perfect" well, you know you aren't "perfect" right now. In a way it should validate to you that yes, you've had or have something to make you weaker, but that something isn't going to rob you of seeing your dear children grow up.

big ((hugs)) :)
 

olly

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april

april,i was so upset for you reading your post.
i think some doc's and neuro's get frustrated when test results come back ok but they don't know whats wrong and can not answer questions.
i do think some could do with a bit more patience and sympathy.
please try not to get upset(easier said than done).
i would leave things for 6mths and see how it goes.
i did mention to someone else in your position,that is if theres something wrong it will show itself eventually.
i hope wright can give you an answer to your muscle biopsy result.
we are always here for you if you need us you know that.
take good care
caroline:-D
ps.........keep that sun shining.
 

wright

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I'm sorry you didn't get any definitive answers . . . BUT . . . you were told that you don't have ALS. Hold onto that as you are going through this process.

Before I comment on your question about your muscle biopsy, could you tell me if they took the muscle biopsy from a region that has atrophy and weakness.

As a further note: your story and symptoms have pointed to an autoimmune issue from the start. I think your docs are on the right track. Sometimes these escape the testing procedures and a definitive diagnosis is never made.

The reason your neuro said she can't tell you that you will never get ALS is because she can't. Anyone can contract it and no one can predict the future.

I would take solace in the fact that you will more than likely be around for a very long time. Be prepared for ups and downs but also be prepared to be with your family and friends for a very long time.
 

hopingforthebest

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Hooray no ALS!

Dear April

I am sure your husband wanted to leave that appointment and do cartwheels for the doctor saying no ALS!

That is the BEST NEWS!

By the way, your daughter's pic is absolutely gorgeous. She needs her Mommy to focuse on her and to "try" (easier said than done) to get back into the circle of living each day and saying I don't have ALS.

Life is too short as it is, and you are young and have a wonderful family. Live today as if it is the first day of the rest of your life.

You go girl!



Patty :-D
 

BethU

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April, I am just so happy that you got the best news in the world: No ALS !

I know how insanely frustrating it is to not have a name for a condition that is causing us such stress, but your neurologist has ruled out the worst possibility, and I'm thrilled for you.

Blessings,
BethU
 

puzzled36

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April,

I know EXACTLY how you feel. My neuromuscular doc said that at least 10% of the patients a neuro will see have valid neuro symptoms and abnormal exams and still never get a diagnosis. Its such a complex science. Thats frustrating for those pts (like you and me) but I think the ones with fatal prognosis' aren't the ones they cant figure out. Try to listen to me, everyone that knows you knows that before all this started you weren't a hypocondriac or in need of therapy so quit feeling like everyone thinks your faking. They dont, they,like you, just dont know whats wrong with you and they are afraid because you are the axis around which your family revolves. Let go of the frustration of not knowing and rejoice in knowing that you probably dont have ALS. I know you have something, it'll probably better show itself in time, but until then dont get caught up in the fear and frustration of all this. Be the best mom, wife you can be and focus on that PT and trying to get stronger. you're in my prayers :)

Gina
 

suzannj

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Hi April,
I just posted a lengthy posting myself. I won't bore you with the details, but a part of our story is the same. I too was just told I don't have ALS.

In my journey here, I thought of you often, as we're around the same age with some of the same symptoms, and both of us have small children. I can feel in your every word that you just want to scream and cry that you just want to know once and for all what in heck is wrong with you . . . and at the same time I am over-the-moon happy that your doctor does not think you have ALS. You will God-willing get to raise your babies, and that is the most important thing. I have to say from your previous posts, I was scared to death for you, and when I saw your subject line today with the sad-face attached I caught my breath thinking you were telling us that you do have ALS. Like I said, I know your post was looking for more answers to your anger and frustration, but I just can't help being happy for you right now.

Take great care, and I hope with all of my heart that things get better for you,
Suzann
 

lostinlouisville

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April

I know your frustrated right now, Don't let that stand in the way of your joy of not having ALS. How many times have you read on here with tears running down your face as you try to make it through someone with ALS's story, I know that has happened to me more than once. I know what you are going through and it's a tough road. Our stories are a little a like, a year ago I looked unhealthy and had symptoms so they hospitalized me for a week, found nothing. My doctor teased me the other day that this year I look healthier but every test blood,urine, chest x-ray,emg etc. has something wrong with it, but now they just don't know what it is. I pray every time I go to the Dr. I will come home with a diagnosed. but sometimes deep inside I don't really know if I want one. I think you are really sweet and have a great family, please hug them bunches,I know you do. Last night my older ones came over with spouses or girlfriends dressed like the 1920's and we had a murder mystery dinner party. Wow I miss them being little even though I enjoy our grown up relationship.. But when I look at my younger children I remember my older ones being that small and that makes me think it all went by so fast. {even though I could not handle 7 the same age lol}. What ever we have and what ever time we have, a day or years, lets just treat them all the same. I really hope you can find something to give you comfort and joy in the wait. Tomorrow I may have a bad day and feel like a hypocrite for writing this, but tonight I feel really optimistic about us girl

Your friend, Renee
 

awieleba

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Thank you all soooooo much for posting your opinions, they mean more to me than anyone elses.

I want to be happy and feel ashamed when so many on this site have had the bad diagnosed. But even though she said no als, I just think that it is too early to show up. Or I believe that I have something and it neuromuscular with out a name and will lead to one of these mnd's. I just have a hard time believing that all this twitching and pulsing is not mnd! It is not bfs with all the other symptoms. I think in 6 months that I may go to the U of MIchigan and see the als doc there for 2nd opinion.

I do live my life and focus on my family and friends. I am looking foward to school starting and getting busy with the kids again. Back on a routine. My family is the one thing that makes me happy. I am blessed. I feel that if I had a diagnosed that then my family would rally around me and 'get it', w/o it is hard. ANd yes before this I was never in therapy or on anti-depressents. I was very active and happy!

WRIGHT: they took the muscle from my right lat. I have alot of twitching in that leg but it is my other leg that has the thinning around ankle and knee. the leg they did, my feet muscle are smaller and a little thinner but no notable atrophy. SHe said they dont like to take from bad leg as it may make it worse if infection. SHe said it did not matter where they took it from, I dont know if that is true. I did have muscular thighs from tennis and have not done it 1 yr. I think i asked about a biopsy on my arm, the one that had more thinning on hand, she said that she did not think that it would matter. But 'lovelilly' had 2 different results from the leg and arm. I just think I should get a 2 opinion. I know this doc is bright and involved with alot of research and has a special concern due to famlial als. She is also the asst professor of nuerology at Wayne state wich is a teaching hospital. What do you think?

I do think that PT will help show what is or not going on here. I just thank you all sooo much for being there for me.

take care

april
 

lovelily

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Hello April...I am very happy that doctor thinks that what you have is not neuromuscular. :) I also understand your total frustration of knowing something is going on with your body, and not having any sort of clue as to what.

My two different biopsy results have left doctors scratching their heads, and have not given me any diagnoses either. So you see really, I feel that I am in the same boat as you!

I am sure your husband is really breathing a 'sigh' of relief....not thinking that you are making this up, but just very pleased that his wife will not be leaving him any time soon.
 

rose

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Hi April, like I said before, don't feel badly that you're not elated right now. If you'd gotten a diagnosis you might feel differently. I think after working with a PT you will begin to get some confidence of a future back, and you'll start to feel differently. What you received is really good news, and I know that you understand that.

BTW, I too want to chime in to say that your avatar of little Grace is just too precious! I love looking at it!

I hope you're having a nice holiday weekend, lots to do with school starting back, isn't there! :)
 

brendapals

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April-
I also am excited for you that the EMG came out negative for ALS. I am still waiting for my neuro to say ok for me to have another one. Not that I am a fan of little needles being stuck in my muscles, but my first and only one was over a year ago.

The frustration has been hard for you, but, for your own sanity, move forward with your life with your family and chalk one up for a learning experience!

None of us know what tomorrow will bring, but one thing is for sure, the sun is going to come up, no matter where we are.

Never give up,
Never let up,
Never lose faith,
brenda
 

planningguy

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April,

Sorry to be joining the party late, and sorry that the results were not what you hoped for. I would echo what a lot of other people have said in taking heart from EMG and biopsy results. Although, I was dissapointed to hear that there weren't any answers for the time being, my EMG results made me the happiest I had been since my echo-cardiogram showed I was good for a few more years of burgers and fries.

I can sympathise a little on the family end. Although my wife has been supportive, I have stretched her limits recently too. My father also seemed a little dissapointed at the end of his trip. Even though I tried to tell him that he didn't need to rush out here for anything, he felt that based on my description of the situation that there was something significant going on (My brother was injured overseas, and opted not to tell him for a couple of weeks. It really set him on edge). I think the neuro's causualness and comments that everything tested so far was "normal" sent him the message that I was taking everything too seriously.

What's helped me the most recently was a sort of compromise with myself and my wife. It wasn't even that formal. The wife and I just planned some family activities that we knew wouldn't tire me out too badly. For my part I've agreed to dive in and let go. I was honestly scared about going to Thermopolis. Hot water, hot days, and exertion seemed like a recipe for disaster. I took it easy, and really enjoyed myself . In medical sociology we used to talk about how in chronic disease, illness can become the defining element of a person's identity (also called the master status). I think those closest to us are worried they are losing everything they loved about us to sickness that consumes our thoughts.

Maybe instead of "just excercising" you and your hubby could go for a walk together and talk about everything but being sick. You might already do this, but I have found that my wife treasurers our alone time even more now.

I'm sorry I don't have any advise on the medical front. You and I are in similiar boats, only you seem to be a little further downstream. We'll make it through the other side. One day at a time.

Robert
 

awieleba

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HI,
once again thanks everyone.

I think that I am going to live with the opinion that I probable dont have als, I may be in that 10% that never get a diagnosed. ANd now that I have a few days on all this I am glad that I did not get a diagnosed, I was hoping For MG or something but whatever.
I have had a good labor day so far, spent all day at the pool with family and then rented movie and the whole family (5) got in the bed and watched---love those nights. We are going to a fair today in 90 degree heat, seee how that goes! and then a parade at my grandma's tomorrow, and then finally....school.
When school starts alot happens at my sons school/church. Iwill be doing MOPS (mothers of preschoolers), I do a womens study at church, and a couples study at the church, I volunteer at the school and of course all the sports and tiger scouts------wish me luck with my phyiscal enduance this fall! IT will be interesting to see how my body responds to all this and the PT!
I am giong to work from home for ( I mean with) my husband, that should help keep my mind busy.

I am gonna wait 6 months and go to U of MIchigan for a repeat emg and 2 opinion on the biopsy. I do feel that my docter is very good, but I may need a fresh new pair of eyes that dont have any pre-conceived idea's about me and may actually tell me my exams results and not hide them.

I thank you all for posting, It really has cheer me up and made me feel so much better! I am going back to my happy self NO matter what happens! well, I may have a down day but I will get back to me.

thanks,

april
 
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