In state of denial..... please help.

[tony2006]

Hello everyone!
First of all please excuse my writing.English is my second language so bear with me thanks.
Went to a referral neurologist yesterday 02/12/13(don't think he is als specialist,my first neuro refer to him for second opinion).After 15 minutes physical examination,he spells out the word "ALS" and I was stunt "did not expect this".
Here's what I got from him:
Reflexes test
R Biceps 1+
R triceps 1+
R brachioradialis 0
R patellar 3+
R knee adductors 2+
R achilles 0
R plantar 0

L biceps 1+
L triceps 1+
L brachioradialis 0
L patellar 3+
L knee adductors 2+
L achilles 0
L plantar 0

Pathological reflexes
Glabellar,crossed adductor,negative jaw jerk and palmomental;absence of the superficial abdominal reflex

Impression
His history.exam and diagnostic studies support the diagnosis of ALS.He has some upper motor neuron findings and has lower motor neuron findings in 2 limbs.His EMG shows denervation(active and chronic)but not neuropathy.His progression is very slow which indicates a better than average prognosis.
Note:
I asked him if I need a secong EMG ,he said no you just had EMG 2 months ago (with first nuro)and recommend to be treated with rilutek.
I have all the tests done with my first nuro include:MRI ,EMG,NCV,LUMBAR PUNTURE AND BUNCH OF BLOOD WORKS(everything normal except elevate CK)
I would appreciate someone here help me to understand all this.Thanks again

 

[here4her]

Hello tony2006,

There are several very knowledgeable people here, some are nurses, some have other experience that will be helpful for you as you go along. The "resident guru", from what I can gather, is a "very helpful member" going by the name of "wright". I suppose that is his real name, whatever. But he can probably give you some answers......go see Mr. Wright.

Go to "community" on the tool bar, scroll to members list, find "w"......send him your post/questions.

I hate to say this, but, welcome to the club.

 

[Nighthawk]

Hi,

I can understand what you are going through.

The acronym ALS is scary as hell since it's progressive and, after so many years knowing about it and "research" being done, a cure hasn't yet been found.

But, Doctors and Neurologists aren't God and their word is not set in stone. They are human beings like you and me, and thus, they still can make mistakes such as misdiagnosis of diseases.

If have read old posts in this same forum where some patients were diagnosed with ALS and, after a while, it turned out to be something else that could be treatable.

So, my advise to you would be to stop worrying and DO look for a second or even a third opinion. Only after doing so, then you can be sure whether it's ALS or something else.

If in the end, after seeking more Neuros opinions, unfortunately, it does turn out to be that dreadful disease, you can count on the people on this forum to give you valuable advice and support.

Regards,

NH

 

[Cricket]

Dear tony2006

I am sorry to hear about your recent diagnosis.*

What you are feeling right now is very normal. Have you tried to get in touch with the ALS Association near you? They might be able to offer moral support and help with the language.

All I can say about ritulek is that it might (not a guarantee) prolong life by 3-6 months. There is the cost and side effects that you might want to look into before making a decision. Hopefully someone here can share their experience.

It sounds like you have seen 2 neurologists and that both confirm the diagnosis. Hopefully someone here can better explain the difference between ALS and neuropathy.

Sorry that I am not much help.

Good luck

 

[dbltree]

Find an ALS Clinic in your state and go for a third opinion there, they deal almost solely with MND/ALS so if they confirm the diagnosis then at least you can be more certain and get help living with it. Hopefully the first two are wrong but I accepted it after two confirmations of ALS

 

[notme]

Hello

I'd get a check by an ALS clinic--the ALS association will give you the contact info to find one. If it is indeed ALS you will qualify for SSDI assuming you have the work credits needed.

It's good that your progression is slow. Your brisk reflexes are the UMN signs the doctor is referring to. But, those can be normal in some people. Unfortunately, with UMN and LMN signs, without other findings on exam and no neuropathies found on NCV, it leads them to an ALS diagnosis.

I'd get a copy of the EMG report and ask Wright (as suggested) to look it over for you. He teaches at a medical school and is well versed in them. If you've only had one EMG and have not seen an ALS specialist yet, I'd hold out some hope at this point. But, I say that having no idea what sent you to the doctor in the first place (what issues you were/are having)

Best wishes to you. You'll find lots of support on this site.

 

[tony2006]

Thank you all for your replies,advise and suggestions.

I was in panic mode,stress,depress thinking that I can not be there for my wife and my children.That is why I am so down.....and I think my health goes down with it for the last few weeks.I feel my weakness is worst since diagnostic compare to last few months.Anyway may I introduce little about myself.I am fifty years old,father of two six years old twin boy and girl.We have been married 15 years and counting.I believed my twin is a special gift from God so I am very blessing and pray and thanks God everyday.

My symptoms began with weakness in right thumb early 2010.Six months latter I noticed wrist drop and atrophy in thumb,biceps,triceps and shoulder muscles.A year after my right arm almost useless and shrink in half.Now my left hand and arm has all the similar symptoms as my right side two and half years ago.Also I have some burning sensation in my lateral left calf but no weakness in the left leg.I did not notice twitching muscles until year and half after first symptoms appeared.

September last year I saw neuro for the first time (when I noticed my left hand weakness also there is some atrophy now)He order all the test include EMG,cervical MRI,LUMBAR,X ray and blood works.EMG finds chronic and active denervation in the right arm muscles,some chronic denervation and reinervation in the left hand.My neuro said he can not rule out als so he refer me to another neuro for second opinion.As you already know I am diagnosis with als three weeks ago.I also have ivig infusion for two days late Jannuary and I just notice some strength in my right hand few days back.I am schedule to see my neuro next Monday and scare to death he will agree with the referral neuro.Please advise me if any questions I should ask the neuro when I see him next week.

Thanks for reading my post,God bless you all.

 

[skipper66]

Hi Tony,
Sorry for your need to be here. I don't know enough to give out any advice on diagnosis etc. But, you might want to check with your nearest ALS association and see if there is a possibility you could participate in one of their clinical trials. Kim

 

[Nighthawk]

Well,

I don't know what to think but, you're saying you were administered IVIG infusions in late January this year, and...you noticed some strength gains in your right hand.
Now that's quite strange.

In pure and classical ALS, IVIG infusions WON'T do anything positive to your muscles/strength, since (apparently, unless more proof is found in the future), ALS is not an auto-immune disease.

So, if your body responded relatively well to IVIG, then you MIGHT have something else going on inside your body besides just Motor Neuron Damage, thus, that's why I previously suggested you to look for more Neuros opinions to make 100% sure whatever you have is either treatable or not.


Regards,


NH

 

[tony2006]

Hello Nighthawk,

I am not really sure about the little strength to my right hand is from IVIG or from being accepting my illness.I was not able to turn door knobs as of 10 days ago.Now I can do it.

I saw neuro this past Monday.H said I am about the same as of the last time I saw him however he agrees with the referral neuro who diagnosed me with ALS but wondering why this neuro did not offer me an EMG test.

Anyway,my neuro order another round of IVIG next week and GM1 antibodies(don't know what's that for?)

Can you explain the differences between neurologist and ALS specialist?I made an appointment with specialist at university of southwest in Dallas but it's gonna be six months from now.I am still holding out for some hope.Wish you doing ok these day.

Tony

 

[Nighthawk]

Think about a Neurologist as if he/she was a general practitioner (GP) Physician and, think about an ALS Specialist as a Cardiologist (so to speak).

An ALS Specialist specializes exclusively on neuromuscular diseases. Diseases affecting the connections between nerves in your brain and spine with your muscles such as ALS, PLS, etc.
Whereas a Neurologist has a more general knowledge of the nervous system but doesn't have the expertise that an ALS Specialist has in this field, and therefore, that's why Neurologists refer you to ALS Specialists when they suspect that your symptoms might resemble certain neuromuscular disorders such as ALS.


Hope this helps.

NH

 

[tony2006]

Thanks for your reply.

So do you think this als expert will do all of the tests over again or he will diagnose me base on the results from my first neuro?

Thank you

 

[momap53]

Many want to do their own EMGs. Gather copies of all your tests, discs of all MRIs and hand carry them.

 

[Nighthawk]

Thanks for your reply.

So do you think this als expert will do all of the tests over again or he will diagnose me base on the results from my first neuro?

Thank you

He/she might. It would be up to him/her.

ALS is very, very critical diagnosis because he/she (the specialist, in his case) would be giving you very bad news...that you have terminal disease with no cure on sight.
That's why some (again, SOME) ALS Specialists are very, very careful before making a definite diagnosis.

Therefore, it's very likely that your ALS Specialist might order the same tests performed by your Neuro or order even more tests to rule out diseases that mimic ALS or even rule out ALS altogether.

Hope this helps.

NH

 

[caldona]

Ask them to test you for Lymes disease it acts like als if not treated