Afraid of the answer

[wshealey]

Hi All. I've just recently joined the forums and have struggled with whether or not to post this, mostly for fear of the answer. I'm a 51 year old male and began noticing symptoms last May that began with foot drop on the left side. I was a runner and had just finished my second half marathon of 2014 and noticed increased wear on the toe of my left shoe. There had also been several instances of tripping and falling due to the drag. I went to my PCP who referred me to a podiatrist who attributed the problems to a tendon issue. While being treated for that I began to develop balance problems which have resulted in a few falls along the way. It seems like I've lost all strength in the outside toes of both feet and am unable to stand on my toes or heels as well as failing on the heel to toe walk. I've also noticed slight atrophy in my left calf and stiffness sets in both legs pretty quickly if I am inactive, especially if there is a chill in the air. I watched my son's baseball game last week in cloudy, breezy 55 degree weather and could barely walk back to the car. I've also begun to experience twitching body wide to the point that it wakes me up at night as well as cramping in my feet and hands. My gait when walking looks more like Frankenstein than it does the distance runner I was nearly a year ago.

Frustrated with no improvement and having been unable to run since May, I went back to my PCP who referred me on to a neurologist. After the exam which showed the above mentioned symptoms as well as hyperreflexia in both legs and arms, she ran a cervical MRI, came up with a cervical myelopathy diagnosis and referred me on to a neurosurgeon. The surgeon, upon reviewing the MRI, very quickly disputed the diagnosis and sent me back to her for a brain MRI and an EMG. The MRI came back clean but the EMG contained elevated numbers that caused some concern. It was at that time she said it could possibly be ALS, PLS or some other MND. She then referred me on to the IU Heath Neurology group that specializes in ALS. After a physical exam with the new neurologist, she agreed that this wasn't a case of myelopathy and that we could be looking at ALS. She set me up with an appointment at the IU Health ALS Clinic as well as scheduled me for a second EMG. Those aren't set for another three weeks so I'm just sitting here in limbo reading all of the information I can find on the disease on the internet, which isn't necessarily a good thing. She did prescribe Baclofen for the twitching which has helped some but I still feel kind of lost and helpless not knowing what the future holds.

I would be interested in hearing what anyone has to say regarding my current condition, good or bad. Thanks for taking the time to read through and sharing your insight.

 

[Nikki J]

Hi
I am sorry you find yourself here. Obviously you still need tests as there are some mimics of ALS that can be hard to tease out. Your EMG concerned the neuro. Sometimes the follow up EMG by the neuromuscular specialist sends things in another direction will hope that is the case for you. But we know the uncertainty is so hard.

 

[Atsugi]

Sorry to see you're experiencing some scary stuff. We know what that's like. But you still have hundreds of non-fatal diseases to go through before settling with ALS. Good luck.

 

[skipper66]

I'm not a expert on ALS by far. But, some of your symptoms are resembling some that my dad had. However, as Atsugi said there are hundred of non-fatal disease yet that do mimic ALS. Hopefully, you fall into one of those categories. Best of luck to you and keep us posted on what you find out.

 

[canmark]

If you’re having difficulty walking, consider a cane/walker/rollator. You want to avoid falls. Good luck with your diagnosis.

 

[wshealey]

Thanks to all for the quick responses, well wishes and suggestions. My wife and I are holding out hope that we are looking at one of the many other diseases that present themselves with these same symptoms. I feel very blessed to have her alongside during this process, not just for the obvious reasons but she is also a nurse and knows what questions to ask and when to try and push for more information.

Falls are definitely my biggest concern in my current condition. Navigating stairs are the trickiest and a cane might be the best thing for me at this time. I'll post any new information and results as they come in. Thanks again for being there. It definitely helps to be able to communicate with others who have experienced what I'm dealing with in one form or another.

 

[wshealey]

Re: Afraid of the answer-Updated

I had my first ALS clinic visit this week and wanted to update where I am. First of all, what an overwhelming experience clinic was. From what I had read in the forums, I went into it knowing that it would be a long morning but had no idea that I would come out over 5 hours later with my head spinning from all of the info we received. Thank goodness my wife was there to write everything down.

Now to the details, we point-blank asked the neurologist if her diagnosis was ALS and she said there was maybe a 3% chance that it wasn't and she felt pretty confident in her diagnosis. She ordered quite a bit of blood work to test for a few things but didn't expect to find anything. I have another EMG scheduled with her next Friday so I'm thinking I'll know something for sure by then. In the meantime, she started me on Rilutek, upped my dosage on Baclofen and prescribed something, can't remember the name, for excess saliva. Since my last appointment four weeks ago, I've developed swallowing issues with saliva, thin liquids and the increased mucous in my throat. The orthotics specialist, PT and OT thought that I would be better served with AFOs and I go Friday to be sized for carbon fibers for both legs. Fortunately my lung capacity testing was really good but my strength test numbers were all over the place ranging from 1s to 5s.

Hopefully, something shows in the blood work and I can come back here and update a different diagnosis. Thanks for reading my ramblings.

 

[Nikki J]

I am sorry to hear this. I hope something else turns up but welcome for now. Robinul perhaps for saliva? ( forget the generic name just now). It worked great for my sister
Good luck with the afo's. Most of us find they help a lot at this stage.

 

[Nuts]

Holding out hope that you are a 3%er!

 

[Green Queen]

Keeping you in my prayers.
Janelle x

 

[DAKEITH]

Keeping you in my prayers. I am also in the diagnostic stages at the IU ALS Clinic. Take care!

 

[skipper66]

Praying for you! Hope you get a different answer. But, we are here if you need us and will support you as much as you can. If you do have your wife is more then welcome to join us.

 

[wshealey]

Thanks again for the well wishes. This community is pretty amazing. I'm trying to get my wife onboard with the forums but I don't think she's quite ready to face some of the realities of the situation which is understood.

dakeith, I saw your post last week. That's a pretty good group at IU Health. I see Dr. Bodkin and my wife and I both appreciate her and her knowledge.

 

[DAKEITH]

wshealey, my husband is not ready to face some of the realities at this time either. I wish you and your wife all of the best, and we will have to stay in contact as we continue with our follow up visits at IU. Take care!