Blanket diagnosis, is this usually the first step?

[MyNexus2U]

Hello everyone,

I am newly diagnosed since December 2015 with motor neuron disease (suspected ALS). I will start with a little background information first. I am married to the most wonderful woman in the world and have two grown children. I have always worked hard to support my family. I have a high school education and joined the Army just after I graduated. Upon finishing my military obligations I returned home and married the girl across the street who was also my best friend. We started our family right away and I worked mainly laborer jobs as we were starting out. There were times that I had to temporarily work two jobs to make ends meet. I am a fighter and not easily discouraged or defeated. In the meantime I spent twenty years as a volunteer fire fighter as we live in a rural community. We were very active in our community and our local church.

The years flew by and I eventually worked my way up to a dream job for most people, a structural aircraft mechanic. At last I had a future and somewhat financial security making more money than I new what to do with. I had a daughter in college and was finally able to start really starting to sock away money for retirement. I had been dealing with moderate reoccurring depression since I was in my early twenties but it was easily managed with medication. In January of 2012 our first granddaughter was born and I was on top of the world and could not have been happier. In May of that year without warning the bottom dropped out. The depression spiked off the charts with anxiety and panic attacks. My job was a high stress job and just the thought of going back into that environment would break me out into hives. Even on the bottoms of my feet. Basically any stress at all would set me off. I was all over the place. Eventually I lost my dream job and health insurance. I was off all medication for probably eight months or so.

Thankfully I am a veteran and my wife was able to get me help. Finally after lots of counseling I was able to learn how to deal with and accept this new obstacle in my life. Finally mid way through 2014 I felt that I may again be able to safely reenter the workforce. I passively kept my eyes open for a lower stress part time job. Sometime in 2013 I started to notice that I was starting to lose a little strength in my legs. I fell once in a while which had never happened before. I explained all this away as the depression kept me sedentary for a while. About this same time I started getting muscle twitches and cramps. The twitches were mainly in my legs and the cramps mainly in my feet.

As time passed they became more numerous and more intense. I started mentioning these to my primary care provider and my mental health care team. They did not seem alarmed or to worried about it so I just wrote it off as possible side effects from some of the medications that I was on. April of last year the weakness in my legs became noticeably worse. I am overweight and decided that I needed to lose some weight and get more physically active to rebuild the muscle in my legs. I started a diet through the VA with a dietician and started walking. I started walking about a mile or so and was trying to work my way up gradually to greater distances. I was losing weight but I could not build up my legs. No matter how hard I tried they became weaker and weaker.

By July I was having nasty falls and broke some toes and stairs were getting extremely difficult. If I went anywhere with my wife I could not even get close to keeping up with her. Sometimes I really had to focus on moving my legs and sometimes my hands. I had had some tremor in my hands which had progressively became more pronounced as well but really no noticeable weakness. It is at this time enough was enough and I made another appointment with my primary care team. It took months and the toes healed slowly it seemed like the falls occurred daily.

I tried to be as careful as I could and finally make it back to the doctor. He readily noticed that I had foot drop and we started with the MRI's, blood tests, and follow up with neurologist. Finally in late October I got in and she examined me. She encouraged me that it was probably a physical manifestation of my depression and that with physical therapy that the foot drop could most likely be reversed. Basically I had nothing to be worried about. She said that if I was still not comfortable that we could do an EMG to be safe. After more MRI's, lab work, the EMG that had findings, and failed physical therapy some one started to believe me. In December we finally got a diagnosis of motor neuron disease , suspected ALS. I can still walk only short distances and when my legs go they go. I mainly use a wheel chair now. The cane and walker were short lived.

Now I am losing strength in my hands and arms. I am starting to have difficulty with some food wrappers and my fingers are getting fatigued when I eat and catch myself wrapping my fingers around the handle like I used to when I was a youngster. My toes curl and I have to massage them to straighten them out to put on my socks and shoes. My wife and I see noticeable wasting of my legs but my neurologist says that she has not seen a noticeable difference. I still have twitches sometimes as many as hundreds a minute and cramps all over. The worst cramps are those of the abdomen that often bruise and are sore for days. I get cramps in the front of my neck or throat making it difficult to swallow temporarily. I really have no trouble swallowing or breathing at least that I have noticed. I do have some weakness in my neck noticeable mainly when riding in a car.

I live on a small farm and do not like being a bystander. My wife, son, and nephew so 99.9% of everything but I still try and do what I can and overdo it and pay for it for several days before I can recover from the fatigue. Still trying to learn to pace myself. I have become very dependent upon my wife for just about everything like bathing, trimming my beard, clipping finger and toe nails, etc. I have a good sense of humor that has carried me thus far. I don't know if the mental issues have anything to do with the latter. I am not a doctor but it all seemed to start about the same time now that we can look back. Sorry this is so long but thought the background may help.

I am not sure what my neurologist is looking for. She keeps saying it is not ALS. If this is so why did she write suspected ALS in my medical records? I have only been seeing her for only six months so maybe she has established a baseline and is watching and waiting for a while before confirming. I really do not have the resources for a second opinion at this time. As you guys know time is so precious now. I am fighting for the second time for SSI and have filed with the VA as well. Sure would be nice to get something going before its posthumous. I have been reading for several days now and have already gotten a lot good information. What do you guys think? Is my wife and I crazy or just impatient? Thanks for all that you do!

Bryan

 

[lgelb]

Bryan,

If you are a vet, I don't understand why there would be a financial obstacle to getting a second opinion, which we encourage everyone to get.

But also, if your neuro is not yet confirming ALS, you have the right to ask what other options are on the table and what should be done to completely explore them, but to get the benefits to which you are entitled, she or another neuro will need to confirm that diagnosis.

Do you have a copy of the EMG report? What do the notes say?

Best,
Laurie

 

[MyNexus2U]

Laurie,

Thank you for the reply! Yes you are right I do need to utilize the VA for a second opinion. I am sorry I guess that I was whining a bit, ok maybe a lot. Dealing with the VA can be very frustrating at times. As I am no longer able to drive we try to make the most of each trip. It is not that far within forty miles or so. We have been getting a lot of run around and folks passing the buck. I found this site about a week or so ago and you guys are probably my best asset. We now have a social worker at the VA who is starting to help us learn how to utilize the system to get the most out of it. We are finding that you have to ask the right person the correct and very specific question to get what you need. From my experience with the VA where I live their experience with motor neuron disease types seem to be limited. As this is a progressive disease I would think that certain things like being evaluated by rehab for things that we may need to make things a little easier. I did get braces for the foot drop about six months to late to do any good. By that time I was heavily reliant on the cane and wheel chair bypassing a walker. Probably most of these issues are because we did not know how. We are learning fast. I wish I had found this support group much earlier as it would have kept us from being reactionary and more prepared for needs as they come. As with all things in life it sure would be nice if it came with a manual. We are fighters and we will adapt and overcome. For the question about the EMG findings and notes, no I do not have a copy. I will be adding them to my paperwork files that I am building ASAP. You guys have already been a huge help. With the depression I have to stay focused and direct the negative energy into positive energy. A big thanks again to everyone!!!

Bryan

 

[Nuts]

Brian, have you read the sticky on veteran's benefits as well as anticipatory planning? Once the VA has accepted your diagnosis of ALS, there will be a great deal of help available to you. Your VA hospital should have a plan for dealing with ALS or else should send you (at VA expense) to an ALS clinic that does have the expertise you need. My husband goes to the Duke Clinic, and they send info over to the VA on what needs to be ordered for him.

It sounds like you've been on a long an frustrating road--I'm so sorry. I am glad you've found us and that you've been reading!

Becky

 

[KimT]

Dear Bryan,
I'm so sorry you're going through all this. I have suffered with clinical depression and people just don't realize how disabling it can be. It makes everything so much harder to do. During this very difficult time, please don't neglect getting meds for depression evaluated, getting counseling, and doing everything to combat depression's interference. To have depression on top of ALS or any other chronic disease is horrible. I understand.
God bless you.

 

[MyNexus2U]

Becky,

Thanks for the info! We are aware of the benefits or at least most of them. I am still researching daily to see if I missed something. Unfortunately until I can get a specific diagnosis most of the benefits are limited. The sticky on anticipatory planning was extremely helpful. A huge thanks for that one. PALS have been for more helpful than any other resource I have had to date.

Bryan

 

[MyNexus2U]

Dear Kim,

Thank you for the support. From my experience the mental health care that the VA provides to me exceeds any other help that I received else where. My mental health care team is all over this and are keeping a very close eye on me. I have the most wonderful wife in the world, two great children, the greatest sister in the world and her husband and two boys, and countless other family friends and neighbors. I forgot to mention my church family as well. I consider myself as one of the richest men alive for all the support that I have. It may seem strange to most people but that was a huge obstacle in dealing with depression. I tried to no avail to reason why and how anyone so blessed could be depressed. I would sit sometimes for days or weeks and wonder why I had no motivation or energy to do anything. Even when I would force myself to start doing something I would catch myself staring into oblivion. I would not be able to focus or finish sometimes the most simplest of tasks. The meds work to some extent but by far my counseling has been more beneficial. It took some time learning to cope with that disability. Fortunately it is now under control and not as heavy a burden. It is more like a shadow now but it does try to creep up at times so we still are keeping a watchful eye on it. I keep all my family and friends updated via social media and many of them say that I am so strong and brave. I keep telling them that it is not my strength and bravery that they are seeing but His. I am not scared of death like a lot of people might be as it is inevitable eventually. I am in no way in a hurry to cross that bridge anytime soon as I have two of the cutest granddaughters that are toddlers and I would sure like to get to watch them grow up. We have a large six bedroom farmhouse that is paid for. My son has recently laid off and as they were renting they moved in with us. They used to live an hour away so for me this is great because I get to spend all the time I want to with my granddaughters. His wife is working and now he is a stay at home dad for now and his helping my wife keep an eye on me. He will be a great deal of help to my wife if, but more than likely when the time comes. Yes you are very correct in you statement!

His Grace is Sufficient,
Bryan