doctor said als after exam

[monster]

Hello everyone,
This is my first post and I'm very scared. I went to a neurosurgeon yesterday, for something else, and I started to tell him about my other symptoms of brisk reflexes (4 years now), muscle twitching (three years now), lossing voice (for no reason, one year) weakness feeling in legs and arms (one year, about)....etc. there more but these are the main ones.
He tested my reflexes and said they are very brisk but when he tested my jaw reflex it was brisk too, he asked to see my brain mri then came back in the room and said "you have ALS' go see a neurologist, and left, just like that.
I just saw one in Dec 2011, hence brain MRI, and he said I was fine..

After I looked up the Jaw reflex on the computer it said upper neuron lesion ?

What does this mean...I'm really freaking out now.. I tried making an appointment with the neurologist who ordered the MRI but I can't get in till june 1st. I've been to two neurologist who just did an office exam and said I was fine, no emg or other tests. How do you find a good doctor? and does the Jaw reflex confirm als?
I don't know how to use this forum so I how i will see replies
thanks

 

[twinmommie72]

Bless your heart...Some Neuro's just have zero empathy! There are a few tests that have to be done before anyone can hand that diagnosis. Have you had the EMG or spinal tap? Your symptoms alone can't give a diagnosis. I pray the idiot you saw is wrong...
Hugs

 

[monster]

This was a neurosurgeon I went to for something else. The computer says I shouldn't have a jaw jerk reflex can you please give me some answers on this. Do people with ALS have this reflex like me? what does it mean.

 

[twinmommie72]

Just like your reflexes in your limbs presenting brisk, your jaw can as well. Do you have an ALS specialist that can evaluate you and order the appropriate testing? This isn't to say you have ALS, however you should see someone that can give the answers correctly.

Dr. Richard Bedlack at Duke in Durham, North Carolina is one of the best ALS specialist on the east coast. People from all over the world travel to see him.

 

[monster]

I know this might be a strange request but I am alone. Is there any way I can contact you through e mail or phone. I am just confused and nervous

 

[twinmommie72]

My speech has been effected, so I am unable to talk. All of us here understand your fears...You are not alone. You can ask anything and everything here. If I put my email address, it will be kicked out by the moderators. After you post ten posts on the forum, you can receive private messages on your profile page.

Please ask anything that is on your mind. We are all here for you.

 

[notme]

My suggestion is you contact the ALSA in NJ and ask them for a referral to a specialist in ALS. Most doctors don't ever see a case--or not many at any rate.

The ALSA will have a list on their website of various specialists in the are you live. Did your MRI of the brain show anything abnormal? I'm guessing not since he thinks ALS. But--a neurosurgeon can't diagnose ALS--a neurologist would. The length of time you've had these symptoms can be a good sign--ALS tends to progress very fast.

brisk reflexes are upper motor neuron -- ALS causes Upper Motor Neuron and lower motor neuron issues usually. PLS causes Upper, for instance.

You also don't state your age--most are diagnosed between the ages of 40-60, while there certainly are exceptions to that rule. When you get to a clinic--make sure you describe the weakness. Generally--it's when you notice you can't do things you could do before without problem. For instance, buttoning shirts, zipping zippers, pushing spray cans. Foot drop might be noticed as tripping over seemingly nothing at all.

Avoid Dr. G o 0 g le. Bad place to go. My neurosurgeon I was seeing for my neck and spine said he thought ALS, too--but he was very nice about it and worked to get me approved to be tested further.

Please--see a qualified ALS specialist--as my experience has shown that it's best to save yourself the frustration of going to others with either no experience in the disease.

There are a lot of things that could be causing your problems. Try to stay positive until you get some real answers.

 

[913mommyof3]

I'm so sorry you were given a diagnosis like this and just left to hang. I do agree with twinmommie72, we all understand the worry and fears. My husband has ALS, it took a while for me to settle down and be able to talk about this calmly. I also agree that you need to get in contact with an ALS clinic. The doctors and the rest of the staff at ours in KC really know what they're doing and put me at so much ease. I'll be praying for you and hoping you don't have this. We've only been in the ALS community since Feb this year. I have found so much support on this site!

 

[monster]

on the computer a postive jaw refex says it is a upper neuron lesion. With brisk reflexes and now weakness is that a good indication on als? I know it is not a diagnoses? my brisk reflexes were my first symptom 4 years ago, now weakness, some.

I am so sorry to hear of your diagnoses. thank you for helping, Your babies look beautiful
I do feel lost right now. Do you think I can find a doctor in NJ that could diagnose me?

 

[monster]

Thanks Wendy,
I also feel for you too. All this just breaks my heart for everyone here. There are no clinics in nj, i checked. There was only a center at a hospital called Robert wood Johnson. The neurologist who I saw locally said i was fine, this was before i felt weaknss. my mri was done in Dec and it said normal but the was checking for ms i think? but the neurosurgeon said i have it. No questions , no answers, just sent my out the door , he was busy.
I'm sorry i keep going on about him
My thoughts and prayers are with you both,

 

[monster]

twinmommie 72, when i get to 10 post can we e mail then

 

[twinmommie72]

Neuromuscular and ALS Center
UMDNJ - Robert Wood Johnson Medical School
97 Paterson Street
New Brunswick,*NJ 08903
Jerry Belsh, M.D.
732-235-7340
www2.umdnj.edu/nmalsweb/

I hope this helps. Hugs

I will be happy to help any possible way I can. Thank you for the sweet comment about my little ones. They are my breath.

 

[Blizna]

It is not possible to get proper ALS diagnosis without an EMG test. Based on clinical exam he might give you an idea but no certain dg.
To me it seems too slow for ALS (3 years of muscle twitching - bodywide?), no atrophy (i guess?) and just some weakness.
Btw how did you know about reflexes?

 

[monster]

In oct of 2006 in went to my pcp for dizziness and racing of the heart. He did a exam and told me I had brisk reflexes and said it was nerves, take a xanxa. the reflexes kept getting worse where i could feel them when something hit my legs and stuff like that..I also started getting muscle twitches. My whole body would jump sometimes...My ankle mostly. From then in 2010 he sent me to a neuro who said i was fine after a office exam..( I also have perinueral cyst through out my spine) all doctors say that is not the cause of my problem of reflexes and twitches..
Second neuro, this past Dec, did brain mri and said i was fine, I went to the surgeon for the cysts and he told me this..
These reflexes have been bothering me for years..I now notice that it is hard to give up after kneeling, etc. getting up stairs my legs feel tired.
I was the chin reflex that caused the surgeon to notice all .

 

[monster]

Thank you twinmommie72 , that was the only place i saw too. do you travel to nc to dr bedlack