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awieleba

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Well, I went to the evaluation for my therapy. It did not go well and left me upset.(what a surprise). She did alot of muscle strenght testing, not the squeeze my fingers and you are fine test.

First she tested my grip strength with a machine that measures it. Most people she said are above 70 and I was in the 40's.:( Then she did the fingers and was surprised at the no strength in my thumbs as I could not resist her pushing at all. So, hands bad. Then on to my feet, same thing. The big toes could not resist her at all and I said 'well, I am sure alot of people cant do that' and she said 'no, most people can including the elderly'. Ok, strike 2!

Then my arms and again she said they were weak and she sould not of been able to break them and she did. NO real strenght in them. Stike 3!

next to my legs. She had me do 5 squats, everytime that I bent down My ankle that has the thinning would pop really loud (I would think due to the thinning and lack of muscle). Then on my back and put up legs, no strenght there, I had to use the other leg to make up for the other. Stike 4---am I out yet.

Long of it is that she was Surprised at my weakness. Everytime she tested me she seemed surprised. Escpecially after I told her last year I was playing competitive tennis and pilates 4x a week. and even now being a mother of 3 young kids, I am active.
She even said that most people do not have this kind of weakness with out an injury or some sort and then for it to be every where like that. AND most people dont just loose strength/muscle in thier hands and feet like that.

She said we will do it 3x a week for 6 week and if you are gonna build muscle back that it would happen by then.

I dont know if I want to go back. She confirmed what I already knew even if the nuero says 'your fine'. I knew I was getting weaker, and my arms have been getting weaker very fast but to have it confirmed really put me over the edge. I like thinking that I am a little weak but it may not be that bad....oh well now I know it is that bad and worse than I thought. I dont want to go through this and see how bad it is. I left there in tears and cried with my husband. I dont want to feel emtionally upset everytime that I leave there.

I am going to get my biopsy result and emg results from neuro and get a 2nd opinion or at least someone who will answer my questions. Maybe when she see's the report from my PT, she will take it more serious? I was thinking of going to the cleavland clinic, it is not that far from me ( a few hours).

I just feel REALLY down and scared and I know my neuro said no als, but something is taking my body down. MY arms are just getting bad in a matter of 3 weeks and it is not getting better. I really should not post my fears or the fact that I have been crying since yesturday but I dont know where to turn.......shoot I just gave my 4 yr old pop at 10 in the morning so he would be happy.....thats bad!

I really do feel that this will end up in a form of mnd, I mean my hands have lost muscle, they look baggy with veins popping out and you can see the tendon on my palm. My feet are the same and one toe I cant point anymore. I should be happy I can walk and write and talk and eat.....but the changes in my body are unnerving

Thanks for reading and I am sooo sorry to post such a emtional thread.
 

olly

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hi april

i am so sorry you found your trip to the pt upsetting,i hope you feel a bit better in a day or so.
pt's are very good at sorting out weakness,this is there job and can take more time over it than a gp or neuro.
i knew i was generally weaker but through a series of test and exercises she could tell the main areas.
mine is limb girdle(hips/thighs and shoulders/upper arms),torso,right hand and the hypotonia in the left lower leg.
actually it looks like most places really but i was suprised at the hips and torso weakness,sometimes you dont realise.
i think it was wrong for her to say she can build up the muscle,the pt is to gently build up strength or in my case to keep what i have as long as possible..........it is not a body building session.
if you did not like her try someone else to do your pt,only do what you can and dont be pushed into doing more only to make things worse.
my pt knows my limits,if i feel i am being pushed i just give it to her straight lol.
my last sessions 2wks ago took it out of me and my symptoms were a bit worse,so i am having a break.
i know how frustrated you are right now with everything,take a few weeks off from everything like thinking about test results,a 2nd opinion ect ,then you maybe able to think more clearly about the next steps to take.
take good care.
(((hugs)))
caroline:-D
 

crystalkk

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April,

Try and stick the PT out, you might be surprised at the outcome. I would wait until Pt is over for the the 2nd opinion. You need to see if it works. If it doesn't work it will give the doctor another piece of the puzzle to work with.

Is your PT on both your arms and legs? The reason I am asking where I live PT is for your lower body and OT is for upper body.

Hang in there,
a
 

CindyM

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April- I had exactly the same experience with PT. We found that the more I exercised, the weaker I got. I still cannot do straight leg lifts or hop or jump- I flap like a crow but cannot get off the ground!

And now trouble breathing! But I am sure this is something auto-immune. Local docs all said ALS back in "06, but the clinic did not agree even though I had "dirty" emg's. All this time I kept waiting for the ALS to present, but now I feel in my bones that it is something else.

So try not to get discouraged. It is hard, I know. But I've watched PALS decline and seen several pass away and still you and I are here- driving, working, and taking care of our families. There is hope for us, I am sure of it!
Hugs, Cindy
 

awieleba

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Thanks all.

Crystal, I am not sure b/w ot and pt. We were gonna do it all and see about improvement. But, my husband is also unsure if I should go because how upset it has made me. I just dont want to feel like this after everytime. I did make an appt with a psyh on monday to help me get a grip on my emtions. I feel like if I have mystery muscle disorder, pt is not going to help. Being weak in area's like your hands and feet are not from disuse.

Cindy~thanks for your story. did you stick with the pt? I know what you mean about others declining. BUT, I am only 10 months into this and Maybe I will have a better perspective if I can go anther 2 yrs and be ok. My arms feel like they are declining fast. My dishwasher broke and I had to do the dishes by hand (yuk, what did any person do before dishwasher) and my hands and arms up to my shoulders hurt. not good.

olly~not sure about building muscle, just trying to get muscle strength I think

thanks for listening to me.......
 

rose

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April, I'm sorry to hear that it did not go well for you! I too feel that you should give PT more than the one shot.

Also remember that your therapist will be sending a report to your referring doctor as to what she found in evaluating you. This is one of the reasons I'd thought it would be so beneficial for you to go. What your therapist found should help point toward a diagnosis, and if you quit now, there won't be any sort of ongoing, objective reference markers as to what progress you make or fail to make.

Try not to look at this as all being negative, you knew you were weak, and felt you were weaker than your neurologist thought, now she will have that feedback from your therapist as well as what you've described to her.

Don't let it get you down. You've gained more information, and this is a step of progress in gathering it.

big hugs!
 

BethU

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I just feel REALLY down and scared and I know my neuro said no als, but something is taking my body down. MY arms are just getting bad in a matter of 3 weeks and it is not getting better. I really should not post my fears or the fact that I have been crying since yesturday but I dont know where to turn.......

April, I'm so sorry that you are going through all this ... physically, emotionally, in every way. ... I think we all sympathize deeply with your distress.

I do agree with Rose. PT isn't just another diagnostic test, to confirm that you are weak, it's treatment to help you gain strength again. Of course, your PT had to evaluate you first, but now that she has established baseline readings, you and she can start to work to help you regain your strength. Her feedback to your doctor in this process will be invaluable.

Please don't cheat yourself of the chance to get a correct diagnosis and a treatment plan by fixating on ALS. If your neuro says it's not ALS, the next question is, "OK, then what is it?" And "How do we find out?" Sounds to me like PT is going to be part of the answer.

And ... I am wondering if your depression might not be a part of the disease, just as there are emotional aspects to ALS. I went through a clinical depression following a heart attack, and it's the worst thing I've ever experienced. And I know that it was NOT a "psychological" problem ... it was caused by the enormous physical stress my body was going through. The body and mind are totally linked.

Clearly, somthing's happening with your body. I know how discouraged you are, but please, please give finding an answer everything you've got. We are all rooting for you to find the correct diagnosed and treatment. It could turn out to be something you have never even heard of ...

Hang in there!
BethU
 

brendapals

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April,

Bless your heart. I'm so sorry you had such a bummer of an emotional day. Please hug your kids and enjoy the weekend, even if you don't do anything but watch cartoons!

And maybe you should take some time off from thinking, worrying, speculating, worrying some more, and just have some fun! Who knows, the therapy may just help you and the docs will figure everything out! You must, must remember to try as hard as it is, to stay positive for your sanity's sake. I know it is hard, but I told bossman on another post, dig deep down inside and find that warrior that I know is in there!

PM if you need to,
Keep the faith,
hugs to you,
brenda
 

planningguy

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April,

Sorry that the PT eval turned out to be so discouraging. I went through a similiar period when we were in "irritated nerve" territory with my neuro. I would continue the PT as it fits into the overall picture.

Like has already been mentioned, your PT will submit updates to the referring Dr. (make sure that they are sending them regularly). It was my PT that basically told my neuro that he needed to see me again ASAP, and that my symptoms did not correspond to readily resolveable back or neck injury.

A good PT should help you make the decision of when to discontinue PT until a clearer diagnosed emerges. After a number of sessions, my PT and I had a heart to heart about my progress. We both mutually agreed that PT was not the best route for the time being, because my body completely rejected the neck exercises, and my symptoms were not improving. I still got a lot out of my PT, because we discussion "healing posture" and muscle relaxation, both of which were very benefitial to me.

Here's hoping for the best,

Robert
 
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