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tmasters

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My symptoms began early last summer, with muscle cramps and weakness in my right calf muscle. As of now, the weakness has spread to both legs (upper and lower) and my right arm is showing some weakness as well. I also have the muscle twitching.

The neurologist did a EMG and ordered blood work. No MRI so far. But on January 23 he told me I have "some kind of Motor Neuron Disease" and he "suspects ALS". He suggested I get a second opinion and submitted a referral.

I went through the emotional crisis that I know most of you are familiar with. I had to find out what this "Motor Neuron Disease" was (never heard of it). I was all over the internet trying to pick up whatever information was out there. Bought some books. Fortunately, I have a lot of support from family. I had to re-learn how to pray, and finally found it again. After 2 or 3 weeks, I began to receive peace and acceptance.

I was naive enough to think I would be getting my second opinion within a couple weeks. :-? Well, it's finally here and I'm seeing Dr. Michael Graves at UCLA today.

Wish me luck. I'll report back.

-Tom
 

brooksea

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Tom,

Good luck and I hope the diagnosed is not confirmed and that you have something treatable! Keep us informed!
 

Icanmanz

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Good luck, Tom. Keep us posted! Prayers are helpful, aren't they? God bless!

Irma
 

crystalkk

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Tom,

Good luck, let us know how the appointment went.
 

sharonca

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I saw Dr. Graves for my diagnosis. He is wonderful. Makes you feel like he has all the time in the world. One thing to note - he would not give me a diagnosis without my husband being present. Good luck.

Sharonca
 

tmasters

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Not Diagnosis Yet

Thanks to those of you who posted with support. I just got back from UCLA a little while ago. So the answer is ... wait. :?:

He said that I have signs which point to ALS, but not enough to definitively diagnose it at this time. I have a few LMN signs in my arms and legs. But the Babinski sign is the only UMN sign I am showing right now. It's not enough for a clinical diagnosis.

As much as I want to know what's wrong without any doubt, this is still a good thing. I have so many people who are going to be asking me what the diagnosis is, and I'm trying to figure out what to tell them and how to explain it.

I really liked Dr. Graves. I had my parents with me to help take notes and ask questions. And Dr. Graves really takes the time to carefully explain everything and make me feel comfortable.

He suggested I try an IVIG to rule out Multifocal Motor Neuropathy. I have to wait for the report to get to my neurologist and then work this through him. Any of you done this?

So I guess I really didn't expect a definite diagnosis. I will keep telling myself this this a good thing.
 

CindyM

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It is a good thing, T. but I know all too well how many mixed feelings come up every time we go to a Doctor.
 

Peg B

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Hi Tom,

I have been through this and have written the story many times here, so you can click on my name and see my other posts. In summary I was DX with ALS on Oct 31, 2007 (symptons since 2002) and for second opnion Dec 7, 2006 I was put on IVIG trial beginning in Jan 2007. At this point I have not gotten better and slightly worse, so I will get another EMG/NCV on May 1, in order to compare it to the 2007 EMG/NCV. If I am worse or not better, I will go off IVIG and will get ALS DX. IVIG is very expensive. It is covered by my insurance. If I get really bad fast, I will go back on IVIG. Its just so hard to DX.

If you do have other questions/concerns please don't hesitate to ask. Take Care, Peg
 
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andyvaughn

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Tom... we are also going to Dr. Graves for a second opinion, having some trouble getting our records over there, ... been yelping about it the past few days and seem to be making more progress. That being said, did you have a lumbar puncture? If so, do you know if you had any elevated antibodies in your spinal fluid?
My husband has both upper and lower "signs".. he has what is referred to as a bulbar onset, but no one can explain to me why he has elevated antibody levels in his CSF, and I haven't found any other PALS that has had that also...
That being said, it sounds like the world of the undiagnosed can be very frustrating, I am hoping and praying that the treatment works for you! -
Andrea
 

tmasters

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Andrea,

Be patient with UCLA. I can totally relate to the frustration of getting your records over there and getting your appointment setup. In my case, my original neuorology appt and referral was January 23 and it wasn't until February 7 that all the paperwork was ready to be submitted for UCLA doctor review. Then you have to wait another 2 weeks for the review before you can even make an appointment! And in my case 2 1/2 weeks later my appointment date arrives.

I didn't have a spinal tap and Dr. Graves told me that, at least in my case, there's probably no reason to have one.

-Tom
 

andyvaughn

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Thank you Tom. I know, the process is painfully slow. We are actually leaving tonight for Jamaica... plan on leaving the beast ALS here in the states, will start the assault again upon my return
Andrea -
 

juliesmile

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Our March 10th experience

Tom,

We met earlier, when you first signed on as new. My husband has similar symptoms and we compared notes. He also went for second opinion on the 10th. We went to USC. Steve is showing symptoms only in his lower extremeties. No weakness in arms. He has fasiculation all over now and his over all size is diminishing. Fatigue is a huge issue.

Anyway, we had thorough exam from Dr. Beydoun including EMG/NVC studies. I figured we would get the same answer you did ie more waiting more tests. Boy were we in for a surprise. He pulled us into his office and basically without fanfair or sympathy said it looks like Motor Neuron Disease. "Unfortunately that is what it looks like". I'm going "O.K. like what do you mean." I expected a little more explaination. So finally after digging around we get him to say it was Progressive Muscular Atrophy which (after going home and reading) is a variant of ALS. It affects only your lower motor neurons, so he doesn't have any brisk reflexes, clonus, spastisity,normal babinski etc.

He will suffer the same fate as an ALS patient and 50% of the time he will progress and his UMN will become involved and at that point it becomes ALS. Life expectancy is a bit longer more like 5-10 years.

Anyway as for knowing or not knowing it's mixed bag. We have been a mess, but at least we are not in limbo any longer. We are trying to get over the shock, cry a lot, tell friends and family and then just go about the business of living, in a hurry.

I would be happy that they are still looking for something else to pin these symptoms on and then pray they find something. I would give anything to go back to the 10th and not have a diagnosis.

By the way we are going for a third opinion at UCSD. There was no support for him. No counseling, no meds, he could use somethig to help him sleep. The nights are the worst. I couldn't believe they would give him this diagnosed and then just send us home. "Be strong, try not to think about what is to come, do no more do no less, just try and be happy". Literally that's what he said. I would not recommend USC.
 

CindyM

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I am sorry, Julie. Sorry for the DX and sorry for the way it was handled. Sometimes I think doctors are in their line of work to cure folks, and when they find out that is not possible they are at a loss for how to act, some of them. I have great respect for the docs and nurses that go into pallitative care, knowing their interventions are important but they will not get the same sort of success as their peers who are busy curing people. theirs is a differnt success, and it is too bad you did not meet a doctor who understands this. Cindy
 

juliesmile

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Missed your calling

Cindy,

Thank you for your quick response. WE can always count on you to respond. You are always so kind and understand our need for someone to hear us. You are such an asset to this forum. I hope you have in your life what you offer to all of us. I would have given anything to have you by my side on the 10th. Thank you.

Julie
 

CindyM

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Gosh, Julie. You have me blushing. And I would have gone with you in a heartbeat, too!

But here is a tip for everyone who posts an unkind remark or says something they regret. It happens to us all, of course. But I find that I am better on a forum such as this. No so good in real time, you see. I am one that does not think guick on her feet. SO I am much better in this delayed-response sort of thing, where I can sit back, formulate my answer, post it, read it, and revise it if necessary. That's the secret. :-D

Anyway, I hope you and DH are recovering from your visit. No matter how you cut it, it is still a shock!
 
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