I'm new here...

[Michellesews]

My husband has received one diagnosis from his neurologist of motor neuron disease. A year and a half ago he started having bilateral drop foot and his spine doc suggested low back surgery. They replaced 3 discs. No improvement so a year later the spine doctor suggested pinched nerves in his neck so he had that surgery in March 2015. He has been getting weaker and weaker in the legs and now wears AFOs and uses a walker. Has anyone else had surgery only to find out it was ALS?
Michelle in Texas

 

[Atsugi]

Wow, that sounds like a very bad series of diagnoses. I'm very sorry to hear that.

When did he get the neurologist diagnosis the MND? Is it ALS?

 

[djbailey]

Yes, My wife had foot drop. Went through testing to include the EMGs by a very good neurologist. The EMG we negative and the other test clearly showed spinal stenosis. The back surgeon went in and did his work and fussed L3,4 & 5. She started to improve but only for 2 months when her left hand started to have issues. Back surgeon said, that has nothing to do with where he operated and sent her back to the neurologist. The neurologist re-ran the EMG and you could tell she found something. That was when we heard the first mention that we may be dealing with ALS. As presented, we would have made the same decisions today that we made then. I am not totally convinced that an invasion into the spinal area did not escalate or start ALS in my wife. As no one really knows what triggers it, it is possible.

 

[Mike in Maine]

I had 3 segments in my neck c-4 to c-7 fused three years before I was told it was ALS. At that time I had hyper reflexes and serve spasticity. Saw no improvement from the operation.

Mike

 

[hjlindley]

I had my ulnar nerve repositioned, my cervical spine fused and my lumbar spine fused. All of those were necessary and all they did was complicate the diagnosis. After every surgery my affected hand got better. The lumbar surgery had been coming for many years due to a birth defect. I just was waiting for the right time and the right surgeon. My cervical spine looks like hell due to swimming competitive butterfly. So yes, we can have other things along with the ALS. Wish you the best.

 

[Michellesews]

Thank you to ALL who responded! I am relieved to know my husband did not endure these surgeries for nothing. Interesting though...wondering if the surgeries do, indeed, escalate ALS. Our neurologist woukd not say ALS, only Motor Neuron Disease. He sent my husband to have a blood test run, Anti GM1 Antibodies, and he wanted to review all the MRIs post surgery ordered by the spine doctor when my husband kept having problems. Right now he must use AFOs and a walker in order to walk. He falls a lot and in order to get up the 4 steps to our home, he pulls himself by the railings. I didn't realize how weak he is until he was trying to get into the hot tub. There are no railings to pull up on and I had to literally support him and it took a good ten minutes. We are looking into getting a railing built there because the hot tub helps him sleep better.

We see the neurologist this coming Monday (9/21) at which time he should have the blood work and have had time to review the MRIs.

As each test comes in they are forwarding them to the VA and I imagine our second opinion will come from the VA. My husband is retired Army.

I'm trying so hard not to let fear overtake me. I see small changes every day and now he has begun getting food stuck very frequently. I wake up in the night just to make sure he's still with me.

 

[anderkling]

Michelle, welcome here. I'm sorry you're going through this. I pray fear will not overtake you, as you write. Oh, it's so, so hard. My heart goes out to you. Is your neurologist a specialist in neuromuscular diseases? You have gone through so much already. From what I understand, MND is synonymous with ALS, although I may be wrong. I hope you get some real answers on Monday. With a definitive diagnosis of ALS, your husband will be prescribed riluzole to slow down the progress. There's someone on the forum named Max, and his number one rule, quoted all the time here, is "Do not fall!" Falls can be dangerous in and of themselves, but also detrimental to the progression of ALS, as was my experience when I broke my foot. An Occupational Therapist can help tremendously in putting things in place so that falls do not happen. I would highly recommend having an OT come into your home and giving you advice.
Charlene

 

[lgelb]

MND, motor neuron disease, includes but is not limited to ALS. ALS is the term used more often in the States, MND elsewhere.

 

[Michellesews]

We received the diagnosis of ALS today, 9/21/2015. We thought we were prepared but I guess there really is no way to prepare for this.

 

[cheerleader]

Michelle, so sorry to welcome you. You are fortunate to be in the hands of the VA. Do start applying for everything in anticipation. ( being prepared but not dwelling on the future is wise!). Apply for HISA, housing grant, handicapped van grant, the $10,000 life insurance, etc. A PVA rep will walk you through everything. The VA was wonderful to us, and took much pressure off us financially. (And now that I've lost my hubby, the monthly stipends I receive allow me to stay in our home and pay to have the things done that he used to do. Not a substitute for my much loved guy- but he knew I would be taken care of, and that made him at ease.). You are so right- no way to prepare for that diagnosis, but you still have together time ahead. Enjoy each day. Donna

 

[Nikki J]

I am very sorry. It is a terrible day when you hear those words. It does get better with time though it is never easy. Glad he is a vet. Print out the VA sticky if you have not already and call the PVA

We are here for you.

 

[Atsugi]

Michelle,
Sorry to hear of the diagnosis. It certainly is a stunningly overwhelming event. I hope you'll continue to be part of our community.
--Mike

 

[affected]

So sorry you had to hear those words. This place will become invaluable support now.

 

[Gembead]

You have now inherited a much bigger family from all parts of the world. Welcome.
Love Gem

 

[Michellesews]

Thank you so much. Please tell me, what does PVA mean? We have not gotten an appointment for the second opinion from the VA yet but they are always as slow as molasses in January. It's good to know there will be support for us...it is so very frightening.