33 years old, weakness, falling

[mrs.eptwa]

I am a 33 year old woman, and my symptoms started at the end of April 2015. First my left arm felt strange - tingly, pins and needles, like the circulation to my arm was being cut off, but never numb. Soon after that I noticed my left arm and hand were weak, I could no longer fully extend my index finger or carry a cup o coffee, and every time I would try to reach behind my back with my left arm, my forearm would cramp up and my hand would lock up like a lobster claw until I released it with my other hand. My left leg was also weak and would just give out and I kept falling.
So, I went to see my regular doctor who ordered a cervical xray and referred me to an orthopedist for a suspected radiculopathy. Ortho examined me and was alarmed because I was hyperreflexic, and ordered an emergency cervical mri because he suspected a spinal cord injury. That mri showed a small bulged disc at c5-c6, but did not explain my symptoms, so he suspected brain damage and ordered a brain mri. After that came back clean he said he thought III had an autoimmune disease and referred me to a neurologist.
Neurologist ordered blood tests, did 2 more mri's and ordered LP. Right around then, my right hand started to go, my hand writing getting worse and worse, and I started to walk funny. All tests neuro ordered came back clear, so he did ncv and emg on left arm - results showed denervation of a bunch of muscles in arm, but not in my paraspinal muscles, and normal sensory, but reduced motor amplitudes. My legs often feel so tight II can hardly walk, and my left arm and hand is cramping and spastic when i wake up...
Now I am waiting to see specialists and thinking if I am going to be diagnosed with als I better get some life insurance quick... rather than after a diagnosis.
Also, I believe these may point away from als, but I do have pain in my left arm that starts in my shoulder and goes down into my forearm, and I also am having a harder and harder time making it to the bathroom in time, like I don't feel the urge to go until my bladder needs to let it go now. And I have not noticed any atropy, but I am obese and have llost 20 lbs but gotten fatter - seatbelt is tighter.

Does this sound like it could be als?
or something else?
any advice?
Thank you for your time.

 

[Atsugi]

I'm not a doctor so I can't diagnose you. I can, however, give you some insights since I know ALS fairly well.
A lot of what you described as symptoms were sensory, like pain and tingling;. Those normally point away from ALS.
The bladder isn't affected by ALS.
True weakness without cause is the hallmark of ALS.
The EMG is the gold standard. Since your neurologist saw denervation, that would bother me. But it isn't the final word. Their are other possibilities.

You're right to buy Life Insurance ASAP. That was the smartest decision I ever made. Get it to the max and read it carefully.
Always get a second opinion from a neurologist who specializes in Motor Neuron Diseases.
Take a notepad and a pen to your appointments from now on.

If, in fact, your neurologist does diagnose probable ALS, ask her to write a letter stating the diagnosis so that you can use that to claim expedited action on Social Security benefits, Medicare, etc.

If you served 90 days in the military, the VA will take good care of you.

Be sure to let us know how it goes. Good luck to you.

 

[mrs.eptwa]

Thank you for the response and for taking the time to read my long post. I understand that you are not a doctor and that no one on this forum can diagnose me, but I do appreciate your input.
I am clinging to the fact that my pain and bladder symptoms seem to point away from als, and I read that no one that has ever posted to dihals has actually been diagnosed with als, so i am hopeful .
I also just want to clarify that although my symptoms began with tingling and odd sensation in my left arm, those feelings went away within 2 weeks of starting and were replaced by pain that comes and goes. When it doesn't hurt my left arm feels completely normal, it just doesn't work properly.
What really made me suspect als is that my neuro called me out of the blue and suddenly wants to do nerve studies on my right arm and left leg before I see the specialist, when he was completely uninterested before. I also went back to the ortho last week because he specializes in pain management since Vicodin did not help my arm pain at all. While there i asked about physical therapy and disabled parking, and he told me my neuro suspects MND and gave me a rx for permanent disabled parking, which scared me. I was hoping this was just a temporary thing, but it was very discouraging that he believes I am permanently disabled...
Sorry to ramble on again.
I was never in the military... and I have no idea where to start with life insurance. Any advice on what type of insurance - term or no medical exam? Also, does anyone know if applying for ss disability will affect my chances of getting life insurance - should I wait to apply for ss?
Thank you again for taking the time to read this, and I promise to update as soon as I am diagnosed with anything.

 

[Atsugi]

First, do you need Life Insurance?
Will someone lose significant income if you were to pass?
Then I always recommend getting term life insurance. I suggest a term of 20 or 30 years.
Be advised that the "agent" is not the "company" or the "underwriter." He's just a highly motivated salesman.

People in poor health might be denied or postponed for more investigation. Always be honest on the application. They have the right to see your medical record after death if they suspect fraud.

Term Life insurance policies that do not require a medical exam tend to be more expensive than medically underwritten policies. But be sure that the coverage includes serious diseases. Some policies pay only for accidents.

Depending upon how much death benefit you ask for, some "no exam" policies still require a medical questionnaire. Some policies don't require a questionnaire. Some will ask questions over the phone. Some are "quick issue or guaranteed issue." The less they know about you, the higher their risk, so the higher your premium. You can research this for different companies. All companies with look you up in the Medical Information Bureau, which is like a credit reporting agency. You can call MIB Group to see your own file. Also, they'll look in pharmacy databases for clues about your health.

Guaranteed Issue Life Insurance – Also known as guaranteed acceptance, applicants are not required to answer any health related questions during the application process. Coverage is available for anyone who applies. Very quick to issue, you get the approved policy in a few days. They cost you more because they take higher risk.

Get smart on the subject by googling "Top 10 Best No Medical Exam Term Life Insurance Companies"

Some companies offer term life insurance without a medical exam or a questionnaire. They give a quote in minutes and you can get a "binder." Then they will look up information about you in any database they can find. Finally, they'll approve or disapprove you.

The binder serves as proof of insurance while you're waiting for the company to approve you. The binder insures you until the final policy is issued or the application is denied. Your policy becomes effective when the life insurance company "approves" your application and receives your first premium payment along with any signed forms that might be required. Send a check with your application so your coverage begins as soon as possible.

Don't worry about SS or MC just yet. First get the life insurance approved and in your hand.

 

[Atsugi]

Mrs, Eptwa, my extensive and detailed reply has been delayed awaiting a moderator to look at it. May take awhile.

First, insurance before anything else.--Mike

 

[Coke]

Is your handwriting getting smaller?

 

[mrs.eptwa]

No, my handwriting is getting bigger and sloppier, as well as taking much more effort. My handwriting is hard to read and looks like a drunk person wrote it, but now even typing is getting difficult.

 

[Atsugi]

Is your handwriting getting smaller?

Coke: I'm confused by your question. How is it relevant to ALS?

I'm sure you mean well, Coke. Perhaps it would be a good idea if, when you post in a new person's thread, you let them know clearly that you don't have experience with ALS. New people might think your questions should lead them in some direction, and that could be misleading and unhelpful.


MRS EPTWA: My apologies that my answers to your post are not displayed yet. My response was automatically selected by the system to be diverted for moderation. And I suspect our moderator, who has ALS, is unable to attend to the site tonight.

It's a shame, too, because I wrote quite a lot of essential advice about the critical subject of Life Insurance.



--Mike

 

[Atsugi]

Mrs EPTWA, Here are a couple of things I remember writing:
PART ONE OF TWO
Any healthy person can get insurance easily.


Insurance Many insurance companies, including well-known reputable firms, offer “Guaranteed Issue” Term Life Insurance. These policies are expedited, and are not scrutinized by the underwriter so much. They don’t require a medical exam, some don’t require a health questionnaire, and some don’t even ask general health questions over the phone. Research companies to see which ones offer these conditions.


Research the companies and their policies by googling “Guaranteed Issue Term Life Insurance With No Medical Questions”. Some policies increase the premiums as you get older.


Of course, always tell the truth. After death, the company has the right to ask to see your medical record if they suspect fraud. But if you are accidentally asked a general question about your health over the phone that you don’t want to answer, you can always say your dinner is burning and suddenly hang up the phone. The agent shouldn’t be so rude as to ask an unauthorized question.


Since the company gets to know so little about you, they charge a higher premium for the risk they take. Some people get Guaranteed Issue insurance because they discovered their old insurance is suddenly expired, and they need to be insured immediately with all the paperwork for a normal underwriting.


In every case, however, expect the company to pull whatever info they can find on you from national pharmacy databases and the Medical Information Bureau. MIB is like a credit bureau; they sell information that other companies have gathered about you. And like a credit bureau, you may get a free copy of your file once a year.

 

[Atsugi]

PART TWO OF TWO
Remember that the agent is not a company representative. He has no authority to approve your insurance application. He’s just a highly motivated salesman.


Also know that some Life Insurance policies are crappy and might only cover death by accident and don’t cover serious illness. Inquire about this.


I recommend a long term, say 20 or 30 years. Do the math on the payout. I found that even the high premium was worth it. If some time in the future, say next year, you decide to cancel, be sure to read the policy to ensure you can cancel at will.


When you call or apply online, they can give you a quote in a few minutes, then they will send you a “binder” document which is proof of insurance from that moment. Be sure to send payment along with your application. Do not delay. However, be aware that they can still reject you until you are approved and they send you the complete policy. You need the actual policy in your hand to be assured you have a contract. For Guaranteed Issue Term Life Insurance with no medical exam, questionnaire, or questions, there is no work for the underwriter, so a good company should be able to get the policy to you within a few days or a week or so. Other types of insurance can take weeks or months to get underwritten.


Get life insurance in hand first. Think about SS and MC and everything else afterward.

 

[Atsugi]

PART ONE OF TWO
Any healthy person can get insurance easily.


Insurance Many insurance companies, including well-known reputable firms, offer “Guaranteed Issue” Term Life Insurance. These policies are expedited, and are not scrutinized by the underwriter so much. They don’t require a medical exam, some don’t require a health questionnaire, and some don’t even ask general health questions over the phone. Research companies to see which ones offer these conditions.


Research the companies and their policies by googling “Guaranteed Issue Term Life Insurance With No Medical Questions”. Some policies increase the premiums as you get older.


Of course, always tell the truth. After death, the company has the right to ask to see your medical record if they suspect fraud. But if you are accidentally asked a general question about your health over the phone that you don’t want to answer, you can always say your dinner is burning and suddenly hang up the phone. The agent shouldn’t be so rude as to ask an unauthorized question.


Since the company gets to know so little about you, they charge a higher premium for the risk they take. Some people get Guaranteed Issue insurance because they discovered their old insurance is suddenly expired, and they need to be insured immediately with all the paperwork for a normal underwriting.


In every case, however, expect the company to pull whatever info they can find on you from national pharmacy databases and the Medical Information Bureau. MIB is like a credit bureau; they sell information that other companies have gathered about you. And like a credit bureau, you may get a free copy of your file once a year.

 

[mrs.eptwa]

Mike: Thank you for the advice regarding insurance, and I appreciate your time
I won't see a neuromuscular specialist until Nov 1st, so hopefully I will be insured by then.
Take care

 

[Atsugi]

Mike: Thank you for the advice regarding insurance, and I appreciate your time
I won't see a neuromuscular specialist until Nov 1st, so hopefully I will be insured by then.
Take care

Whew! I'm glad to see you back here. I was afraid you wouldn't get that write up in the insurance. I think your timeline is sound. Good luck.

 

[mrs.eptwa]

Had emg of right arm and left leg today and was going to post it but can't add attachments. EMG "reveals signs of diffuse acute and chronic denervation in all muscles tested".

Now I just have to wait for Nov. 1st...

Any thoughts?
Thanks

 

[Nikki J]

Concerning. What was the whole conclusion and what did the neurologist tell you about it? I hope your next stop is a neuromuscular specialist at an ALS clinic. From the snippet you have posted I don't think ALS is the only answer but it is certainly high on the list. I will say though that we have had members who had equally dire findings and were diagnosed as ALS by a local neurologist only to have the diagnosis overturned by the neuromuscular doctor. I will pray that happens for you.