Some kind of Motor issue going on here....

[Babycakes]

Hi all,

I think like most ppl who have ended up here, I'm thinking that there is a slight possibility I might have ALS. That sounds crazy just saying it.....I'm hoping for a listening ear and maybe a few suggestions or stories etc.....basically support. Thanks in advance.

So here's my story. I'm a 33 yr old woman. About 6 months ago I noticed some weakness in my right hand (specifically thumb and index finger) and thought it was carpal tunnel syndrome. I went to the doctor and starting wearing a brace at night for it. The past few months its gotten noticeably worse, I asked to be worked up for the Carpal Tunnel Syndrome, had an EMG that was odd and ended up seeing a Neurologist last week to repeat the EMG.

After establishing that what I was describing was not Carpal Tunnel, the Neurologist did an EMG and then a needle version of that, blood work, and ordered an MRI of my neck and spine. The muscles in my forearm and bicep area feel weird too. It's an odd feeling......kind of like its asleep? I can tell that I'm compensating with other muscles. Oh also...you can physically see that my hand muscles are smaller/gone/atrophy idk what......in my right hand. It's creepy. I should also say, I don't feel numbness and tingling. Pain once in awhile when I'm trying to use my right arm, but not at rest.

The Neurologist said it could be a pinched nerve, cancer, something auto-immune or ALS. The EMG was abnormal in my whole arm. I'm supposed to see him in 2 weeks and he is going to do the EMG on my other limbs.

What do I do now?

 

[lgelb]

That's a wide range. Does this neuro have a neuromuscular practice? If you care to post his name, we can advise in re his creds.

Best,
Laurie

 

[Babycakes]

The neurologist I saw is not specialized (that I know of) in Neuromuscular issues. Frankly, I didn't even think about ALS or something similar as a potential diagnosis until he mentioned it. He seems to be good though...but I'll definitely seek a second opinion if I am diagnosed. (Most likely at Stanford or UCSF----feedback on either of those would be great)

 

[Atsugi]

Cakes, a few things in your post weren't 100 percent clear.
First, you wrote "I asked to be worked up for the Carpal Tunnel Syndrome, had an EMG that was odd"
Do you mean it was odd that you were given an EMG, or do you mean that the results of the EMG showed something odd?

Then, "and ended up seeing a Neurologist last week to repeat the EMG.
So who did the first EMG? Was it not a neurologist?

"the Neurologist did an EMG and then a needle version of that, "
I think "the needle version" is the EMG. The first test used pads glued to the skin. That's called an NCS--nerve conduction study.
The test with the needles if called the EMG.

Got any results from the EMG?

 

[Babycakes]

Atsugi,

All of this is so foreign and new.

My primary doc referred me for a NCS to evaluate Carpal Tunnel Syndrome. That was done by a tech. The tech had to go really high on the voltage and still didn't get a good motor response. The Neurologist who was planning on reading it said we needed to repeat it because he couldn't read it. I met with him on Wednesday. I was really grateful to meet with him, because I knew what was happening didn't fit with CTS. The Neurologist started with a NCS, but did it up to my neckline. He did reflex testing as well, but I didn't understand the significance of it, then he did the EMG. I was shocked, because that was not the plan. I haven't received the formal results for either test. I'm anxious because the symptoms listed for ALS and MMR seem most close to what I'm experiencing.....but there's no way

 

[lgelb]

Again, you have a right to the full report and that will clarify things considerably.

 

[Babycakes]

I can ask for them on Tuesday when I have my MRI (its in the same building)

I'm partially kicking myself...I work at Stanford. I opted for Kaiser insurance because its more convenient for my kids preventative care. Kaiser is fine and I think they are doing a good job doing a full work-up....but Stanford is a center. I can change insurance late this year....or maybe they will refer me.

 

[gooseberry]

Kaiser tends to like to stay within their groups of docs. Once you get your results, I would ask for a second opinion at whatever facility works with your issue.

 

[Babycakes]

Thanks guys, I'll update when I get results. This forum has a ton of info. Thanks for being here!

 

[diagnosed2016]

I have no idea if it's ALS based on what you've written but since something may be abnormal with your emg I would suggest doing what we did before we got an official diagnosis. If your family counts on your income, get disability insurance NOW, and up life insurance policies or purchase new ones that can be converted to an early pay out. i only say this because you mention having kids, not to freak you out. You can always cancel the policies if you don't need them but you won't be approved if you have a diagnosis. We actually waited to get a diagnosis until we sorted that all out and policies were issued and thank god we did, because this disease is expensive.
Edited to add: the reason we knew for sure it was ALS when it was mentioned as a possible is because of our family history, so don't panic, but do be proactive.

 

[Babycakes]

I'll get the EMG test copy tomorrow. Can you guys help me figure out what it means?

Also, my husband and I talked about life and long term disability insurance. I have both, but probably not enough....if it is the worst case.
Thanks

 

[Babycakes]

Everything else on my life insurance policy should be fine to up our policy...I wasn't sure if I could change it now or not....any advice on that?

 

[swalker]

Regarding insurance (both disability and life):

1. Move on it immediately. If anyone is underinsured for their situation, they should address that without delay, regardless of what they think their insurability could be like in the future. It is not fair to your loved ones to be under insured.

2. Do not put a current policy at risk. So, be careful about trying to add insurance through a current policy if there is any chance the insurance company could decide that you somehow violated the rules, thus potentially giving them the right to cancel your policy.

3. Term life insurance is very inexpensive. Get a new policy from a highly-rated company ASAP.

4. Carry sufficient life insurance to cover the needs of your loved ones in the absence of your contributions to the household (income, child rearing, etc.).

5. Disability insurance is expensive, but every household that depends on someone's income should have that someone covered by disability insurance. Be aware that in the US the way disability payments to you are taxed depends on whether the policy premiums were paid with before-tax dollars or after-tax dollars (at the federal level). This can make a huge difference. Most employee-provided disability policies have their premiums paid with before-tax dollars, meaning the benefits will be subject to federal income tax. Also note that many disability policies will require you to apply for social security disability upon disability and will subtract the amount you receive from social security from your monthly benefit.

6. Play by the rules. You don't want to provide an opportunity for the insurance company to cancel you policy down the road. If the rules prevent you from practically getting insurance, it is better to find that out now.

The bottom line is this. If you (or a loved one) are underinsured, do something about it TODAY - regardless of the potential medical issues you may or may not experience in the future.

Steve

 

[Babycakes]

Thanks for the advice.
1. About LTD, mine is through my work and I'm sure the issues you mentioned would apply. Thanks for the heads up.

2. About life insurance, my current insurance is about 7 yrs of income (30 yr term) It was sufficient when I got it. I should get an additional one. Probably like today.

 

[diagnosed2016]

When we got The extra policy we had been testing for weakness/drop foot and did not have an ALS diagnosis, so were able to answer all questions honestly in order to qualify. Some policies have a clause that you can't be diagnosed within 30 days of policy start date... if you purchase a new one, make sure you know what those rules are. If you need to, you could always move your results appt, so that everything is in place beforehand. A month of uncertainty may be more palatable if you know it would protect your family in the long term. The duck company (not sure if I'm allowed to name companies) had an easy to qualify for policy that pays out for all sorts of things like dr appts and tests in case of major illness (like cancer, but other things are covered too, like ALS)