Possible MND from Aug 2015

[gemini zg]

Dear all,

I will try to make my story as short as possible. I am 49 years old male, finance manager.

Two years ago I started to notice problems with walking and went to see my MD. He sent me to a neurologist who found that I have hyperreflexia, babinski on left leg, foot clonus, made brain, cervical and torrasic spine MRI, EMG and lot of blood works. EMG showed radiculopathy on L2, L3 and C5. As they did not have any explanation for all this symptoms they concluded that this can be possible ALS.

During next six months we did two more EMG, first showed no changes, on second they added C6 and C7 to the list.

In Aug 2015 I was able to walk some 100 meters without rest and climb up two floors. End Aug 2015 I was on physical therapy in a special institution for a 3 weeks. After that I was able to walk some 300 meters and climb up 5 floors without rest.

I continued to work and exercise and in Aug 2106 I was able to climb all 7 floors in 2 min 40 and I was able to walk more than 2 km without rest.

Two months ago I was able to climb same 7 floors in 2 min 30 (I tried few times to confirm) and I am still able to walk more than 2 km, but now I am faster than year ago.

In Aug last year isokinetic testing of my leg muscles has been done, strength test for a hip and knee muscles and fast test for a knee muscles. Two weeks ago we did this same testing again. All tested muscles were stronger 15-20% then last year, on a fast test for a knee muscles only 2 out of 14 motions were spastic.

Just to mention, in Aug last year I did not have babinski or clonus any more, only my reflexes were "little stronger than it should be", as explained by my MD.

In Oct last year I started to feel weakness in my both arms, it was very hard for me to write on my PC keyboard with all fingers as fast as I was used to do. I started to exercise my hands and now it is much better but still not good.

I started to feel fasciculations during spring 2016, it were very intensive until Nov 2016, now I almost have no fasciculations. I have almost constant lower back pain (but not to hard) and neck stiffnes (if I try to turn my head to much I feel dizziness)

I had no cramps so I did not want to take baclofen.

I am reading posts on this forums for a last two years trying to find an answer, so I am sure that this is the right place to ask.

I would appreciate any opinion or insight.

Thank you very much.

 

[lgelb]

Hi Gemini,

As you know from reading the forums, ALS/MND does not improve, in general, and the features you describe do not really fit any patterns we know well, though they resemble upper motor neuron disease more than lower. I certainly agree that with pre-existing dizziness, baclofen may not be a good idea. If your back pain, according to your physicians, is nerve pain, you could try low doses of gabapentin. If inflammation is involved in your stiffness, any standard NSAID might help. Heat, massage and PT as evidently you have had are all worth trying and continuing if they are helpful.

I doubt you will have a definitive answer unless you visit a neuromuscular center, as there are so many rare neurologic disorders you could have. The major concern I would have is missing something treatable, like an inflammatory myopathy, rheumatologic disorder, tumor or spine damage. So a second opinion at another center is recommended, always, in a situation like this.

Best,
Laurie

 

[gemini zg]

Dear Laurie,

Thanks for the answer.

I was diagnosed 2 years ago by neuromuscular specialist. I stayed few days in a hospital, they did MRI, several blood works and EMG. Everything was checked by 3 neurologist, neurosurgeon and additionally they consulted one more neuromuscular specialist in another hospital. They were also searching for a tumor, myopathy, spine damage or demielinizations. My doctors mentioned possibility of upper motor neuron desease, but during last year babinski and clonus disapeared, now I have only slightly elevated reflexes on both legs and arms.

I am aware that improvement is not in ALS vocabulary but after a lot of reading I decided that this is a best place to ask. I found several people who was struggling for a year or two before definite diagnosis.

Although I am obviously stronger and can do more I am not feeling well. Last few months I have a very strange feeling in most of my muscles, both legs and arms. It is hard for me to describe it, it is like when you want to stretch your muscles but very intensive, this feeling does not goes away, doesn't meter how much I am stretching and exercising.

Very soon I will go for a one more detailed checkup (health care is free in my country so that is not a problem) and then maybe they will find what is really wrong with me.

Thank you for your answer and all the best.

 

[Lkaibel]

Sustained, significant improvement practically excludes ALS.

In very rare cases, temporary improvements have been documented but that's like saying it has snowed in a June- very rare.

My hopes for you are solid- best wishes and let us know how this turns out please!

 

[gemini zg]

Dear Lenore,

Thank you very much, your words sounds very convincing.
Every day I am trying to convince myself but it is not always working, specially not on a bed days.

That is why I am measuring evertything I am doing, so when I am feeling very bed i can check if I still can do all the exercises; if I still can do more than 25 squats and more than 5 push ups then all is like yesterday.

Recently I met a guy with similar simptoms and story, he is suffering from a hard cervical myelopathy, only difference is that his myelopathy is clearly visible on MRI.

At the beginning of Sep I should have one detailed examination by my neurologist, I will certainly let you know what was found.