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Zaranataly

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Hi everybody,

I have been seeing a neurologist for about 3 months now.
These are the tests I'be had so far:

1. MRI brain, cervical, lumbar, thorax
2. EMG; upper & lower extremities, neck, lower back
3. blood work for myasthenia gravis
3. blood work for myopathy (creatine, some other names).

Basically on Wednesday my neurologist told me that the EMG shows decresed nerve velocity to my legs ONLY.

And that the MRI shows that I have a herniated cervical disk. She said that the herniated disk is not severe enough to explain all my symptoms but it could be a possibility.

She also said that the decreseased velocity is not bad enough as it would be in someone with symptoms for almost 3 years.

I asked her if she thought I could have other disease that mimics ALS and she couldn't give me an answer. She stated that she could not give me a diagnosis. She said that I need a second opinion and an EMG to my bulbar muscles & other tests.

She still said that she continues to "suspect" ALS but she can't say for sure. I told her "Dr. I don't want to be a medical mystery, I want to find out as soon as I can and either get the help I need or prepare for whatever is coming" and she basically shrugged her shoulders and said that she can't give me a diagnosis at this time.

She scheduled me for an appointment in 2 months!
BUT the appointment with Dr. Harati will hopefully be within the next month.
I am angry & confused. I don't know what to make of all this. I am calm but very frustrated.

:confused: :confused: :confused: :confused:

Any thoughts on this?
 
>BUT the appointment with Dr. Harati will hopefully be within the next month.

you might also check with Houston Methodist, Dr. Appel's clinic to see about their 3-day diagnosis appointments. Tedious, but definitive ...
 
You're so wanting to be able to prepare (as you wrote)...("I want to find out as soon as I can and either get the help I need or prepare for whatever is coming") But... are you prepared for GOOD NEWS when Dr. Harati tells you, "You don't have ALS!" (?) You've believed for three years you have ALS but what about the day you find out you don't? Be prepared to handle that too! Or, you could ask Dr Harati to refer you to Dr. Appel.
 
Well... my reply went to Moderation. Whatever...
 
>BUT the appointment with Dr. Harati will hopefully be within the next month.

you might also check with Houston Methodist, Dr. Appel's clinic to see about their 3-day diagnosis appointments. Tedious, but definitive ...

A lady named Mrs. Williams called me from Dr. Harati's office this evening. They're still pending to receive my MRI's and then sometime next week after Dr. Harati reviews ALL my tests I should get an appointment.

I'm READY to hear that it's not ALS! I've cried enough over this. I just want to end this mystery & misery:

I'm just curious to know if there's anybody here who has heard about similar symptoms or has similar symptoms.
 
Do you have clinical weakness or have you had less than normal lung capacity tests for your age? I agree with Max, you should get a referral to Appel's diagnosis clinic. I feel for you. Good luck.
 
I keep praying that they will find a missed lesion or even a (gasp!) tumor. At least something that gives you a fighting chance of recovery. Anything but the words MOTOR NEURON DISEASE.
 
I keep praying that they will find a missed lesion or even a (gasp!) tumor. At least something that gives you a fighting chance of recovery. Anything but the words MOTOR NEURON DISEASE.

Thank you. I have a army of people praying for anything that can treated.

I will mention to Dr. Harati that I have suffered from hyperhidrosis since I was 11-12 yrs old. I take Glycopyrrolate to decrease the sweating and I have used certain-dri deodorant for almost 6 yrs.

My hyperhidrosis gives me a small tiny little bit of hope that this could be Isaac's syndrome.
 
Do you have clinical weakness or have you had less than normal lung capacity tests for your age? I agree with Max, you should get a referral to Appel's diagnosis clinic. I feel for you. Good luck.

No, because my neurologist basically "gave up" on me. She said whatever it is she can't give me a diagnosis. I will try a different neurologist in my area before I try other clinics. I live about 7 hours from Houston. Actually, San Antonio is pretty close to me. Are there any clinics there?

Thanks for the well wishes
 
>I live about 7 hours from Houston.

It's a pita, I know, but Appel's the right answer. you can stay with us if you need. we are 35-60 mins from Houston Methodist depending on traffic ... remember, it's a 3-day diagnosis clinic. your neuro should be able to get you a referral.
 
>I live about 7 hours from Houston.

It's a pita, I know, but Appel's the right answer. you can stay with us if you need. we are 35-60 mins from Houston Methodist depending on traffic ...

So, what would I need to get an appointment there? Should I personally obtain my records from my neurologist and just take them with me, fax them? Or do I need my neurologist to write down a referral?

I was very offended with my neurologist's approach to all this. She basically wants to play the waiting game. I might add that she's also very young. :?

Thank you Max for the invitation. I have a distant cousin and my in-laws in Houston!
If I get a definite ALS diagnosis while I'm there I would really like to meet you and just talk about the whole process, etc. I think it would bring me comfort to meet someone else with ALS (if i have it).

Thank you for your responses.
 
>So, what would I need to get an appointment there? Should I personally obtain my records from my neurologist and just take them with me, fax them? Or do I need my neurologist to write down a referral?

I think Appel will rely on his own testing.


>I was very offended with my neurologist's approach to all this. She basically wants to play the waiting game. I might add that she's also very young.

my 1st one down here was a total quack. However, she was able to assure I did not have ALS. It took Appel 1/2 of the first day :-(.


>Thank you Max for the invitation. I have a distant cousin and my in-laws in Houston!

Well, it's open if you need.


>If I get a definite ALS diagnosis while I'm there I would really like to meet you and just talk about the whole process, etc.

well let's just hope not. You'll probably learned more about the whole process from this forum. I can share what I have learned so far, but everyone is so different, as we say ALS progression is like a snowflake no two are alike.


>I think it would bring me comfort to meet someone else with ALS (if i have it).

let's wait and find out what you have to face. The ALSA and MDA organizations have support groups where you can meet others in your area, too.

Hang in there :)
 
>So, what would I need to get an appointment there? Should I personally obtain my records from my neurologist and just take them with me, fax them? Or do I need my neurologist to write down a referral?

I think Appel will rely on his own testing.


>I was very offended with my neurologist's approach to all this. She basically wants to play the waiting game. I might add that she's also very young.

my 1st one down here was a total quack. However, she was able to assure I did not have ALS. It took Appel 1/2 of the first day :-(.


>Thank you Max for the invitation. I have a distant cousin and my in-laws in Houston!

Well, it's open if you need.


>If I get a definite ALS diagnosis while I'm there I would really like to meet you and just talk about the whole process, etc.

well let's just hope not. You'll probably learned more about the whole process from this forum. I can share what I have learned so far, but everyone is so different, as we say ALS progression is like a snowflake no two are alike.


>I think it would bring me comfort to meet someone else with ALS (if i have it).

let's wait and find out what you have to face. The ALSA and MDA organizations have support groups where you can meet others in your area, too.

Hang in there :)

I will call to the Appel clinic Monday.
I think 3 yrs of waiting is more than enough, I will definitively not wait any longer for an answer.


Thank you Max :smile:
 
Hi,

To get an appointment with the clinic that Max mentioned, you will need to have your neurologist send them all the info in your chart. Then they will review it and decide if you can make an appointment or not. I think I mentioned in your previous thread that I sent in my info in early May, it took them three weeks to review, and then the earliest I could schedule was for the last week in July (two month wait time) . I mistakenly thought this was the doc in Houston you were referring to. Soooo slow. The waiting is driving me a little crazy, too, but it will be good to have information I know I can trust. I feel you on that.

Good luck,
Suzannah
 
Yea, I was confused too, my doctor told me on Wednesday that it's the Baylor Clinic. If i need a referral from my neuro for Dr. Appel, I don't think she'll give it to me. She said that she sends all her patients that need a second opinion to Dr. Harati.

I wish you the best of luck at the clinic.
The wait is the worst part. Will this be your first time going to a clinic?
If your appointment is sooner than mine I'd really appreciate if you could share your experience with me. I really don't want to get my hopes up on getting a quick answer from Dr. Harati as I know this can be a long process.

But like you said at least we'll get information that we can trust.

Best of luck to you too Suzannah!
 
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