Hi I am bja723

[bja723]

I was just diagnosed yesterday with 98% sure ALS. I am scared but I want to be brave as I am 65 years young with a wonderful husband and great family. I believe my symptoms started nearly 2 years ago in the Summer of 2014! I began with left foot drop left leg weakness and I already had herniated discs and other back issues that I was being seen for when I started falling I got suspicious that I had MULTIPLE SCLEROSIS ALS never crossed my mind. Anyway I had spine fusion which all Dr's agreed I would walk within 6 months. So since June 2015 til now I just kept getting less mobile. Neurosurgeon sent me for EMG and then evaluation so right now I am not sure how fast it will go or anything! I am grateful for this forum as I am sure I will find helpful information as well as support from others. I hope I can be a help to someone else when I know more.

 

[lgelb]

Welcome with sadness, BJA. Your family will be a great help to you. Continued disease progression after surgery is a fairly common presentation. If you have not yet had an EMG, the possibility for something more treatable still exists so we will keep that hope alive for now. What center are you going to for that?

Best,
Laurie

 

[Nikki J]

Welcome but sorry of course. I read that as you have had the EMG and evaluation hence the diagnosis? If so really sorry. Please feel free to ask any question. If you have not already done so, I hope you will read the stickies and find them helpful. Search can be a useful function too as you can read answers written by former members as well as current ones. Look forward to getting to know you

 

[lgelb]

Sorry if I misinterpreted, B, but if you've had an EMG, would still recommend a second opinion as we do for all, at a major neuromuscular center.

 

[bja723]

Hi and thanks for your input! Do you know if the blood work shows that the disease is familia?

 

[bja723]

Thanks Laurie! I just had blood work to confirm ALS won't know 100% til Feb 26th! 2% chance that it could be something else! Dr seems sure it is not!

 

[Nikki J]

About blood work and FALS. There are identified genetic defects that account for about 60-75 percent of FALS. If there is no family history this panel would not usually be done as FALS is only 5-10 percent of ALS and most of us know all too well that we are FALS families. In the US genetic testing would not be done without you being counseled about it and you would have signed a consent to testing.

Re your comment to Laurie I expect you know there is no blood test that confirms ALS. All the blood tests are to look for other explanations. It sounds as if you have had all the other tests including an EMG?

 

[bja723]

Thank you Niki! I did not know that the blood work does not diagnose ALS! I did have EMG! I am researching stem cell option! There is some real progress out there and I am hoping that a cure is on the horizon! My spinal stenosis started years ago along with deteriorating discs in lumbar spine! I started with the foot drop left side a year ago and began falling Nov 2015! Since spinal fusion my back is great but muscle atrophy in left leg worse! I just don't know what to expect - I have hopes that I have a slow progression of this disease!

 

[Nikki J]

I certainly hope you progress very slowly. Are you being seen at an ALS clinic? By a neuromuscular specialist? If not I would defintely see a neuromuscular doctor.

ALS is diagnosed by a combination of things. There need to be certain findings on the physical exam and on the EMG for a formal diagnosis. Other causes need to be excluded to make the diagnosis which is why there are blood tests and usually an Mri. Sometimes other tests like a spinal tap

Be careful about stem cells. There are many people out there who are looking to profit by preying on desperate people. Stem cell scams are a prime example. There are legitimate research trials on stem cells. If you are looking into that that is good. If you are looking at commercial enterprises that claim to treat ALS and probably other diseases for a price not so good

See post 4 on this thread for an honest and thoughtful comment on where stem cell therapy for ALS is now. Dr Benatar is a leading ALS doctor and researcher
https://www.alsforums.com/forum/als-research-news/31056-brainstorm-cell-therapeutics.html

 

[bja723]

Hi Laurie I am in pursuit of 2nd opinion! I found a doctor in North Syracuse NY that specializes in ALS in fact the Medical Center she is from is strictly an ALS Facility! I am waiting to hear from the Dr's secretary to make that appointment.