father-in-law died of ALS, husband is worried about his twitching

[wifey]

hello,
my father-in-law died a couple months ago of ALS. he was in his mid-sixties.
my husband is now concerned because he feels he has twitching muscles - thighs, arms, chest. and last week he said he felt arthritis-like symptoms in his hands. he is 31 years old.
i know there is no way to know for sure, but i wonder how worried we should be. should he start seeing a neurologist? my husband also thinks it might be stress - like when someone reads a lot or knows a lot about a disease he is convinced he has it.
any advice/suggestion would be so very appreciated. thanks.

 

[Al]

Hi wifey. Welcome but sorry for the reason you are here. I would guess it is stress related. Not being a doctor doesn't help but after hearing all the stories here I'd put my money on the stress of losing his father. Has there been any other family members with it? #1 is pretty young to get it but not impossible. I'd wait a couple months before seeing a Neuro.
AL.

 

[Angelgirl]

I lost my mom to ALS back in July. Since then I've been experiencing twitching as well. I'm wondering if it's because I was sooooo close to the situation and coming on the forum regularly to see others comments that perhaps pyschologically I'm assuming I'll be the next. It's almost like I'm looking for symptoms. Could it be from going thru the grieving process? Any thoughts?

 

[shopathonic]

If you and your husband are concerned, then you ought to see a neurologist right away--there's no reason to delay. Just be sure that the neurologist is specialist in neuromuscular diseases--otherwise, you'll be wasting your time. In New York City it should not be difficult to find a very good one who accepts your insurance. The sooner your husband does this, the sooner you both will have the reassurance you need. No one out here can really diagnose his condition based on a report of symptoms--he has to be examined an evaluated by a professional. In all likelihood it is nothing serious.

Jeff

 

[mamaoftwo]

Wifey - there is one VERY GOOD reason to delay. Before you consult with any doctor about this, get your life and disability insurance sorted out now. If by any chance there is something wrong, you will have a problem getting it. I have even heard that some people have been denied on the basis that they even consulted a neuro - even where it turns out that everything is fine. So play it safe. Get all your papers in order and then go see a doctor.

 

[Al]

Good advice mama. I forgot about that. So many people have been here and rushed off to see a Neuro and been refused ins. down the road. Seeing a Neuro right away after just a few symptoms can come back and bite you in the butt. Waiting a month or two while you get some Ins. isn't going to make any difference in the outcomes of 90% of the MND's or anything else you may or MAY NOT have. Just my opinion.

Angelgirl. The mind can make the body do strange things. Grieving and it's stress are one of the most damaging things to our psychological well being. I am sure it could give you twitching. If it continues I'd get it looked at but in the meantime I'd try not to hang around ALS websites until you are done the grieving process and feeling better. Once again just another opinion. Not a doctor but have been around the block once or twice as they say.
AL.

 

[CindyM]

I have friends who had parents pass from cancer and you do question every little sign for awhile. Works the same with Alzheimer's. right after my Mom was DX'd with dementia we all started second-quessing ourselves every time we lost the keys to the car. Doesn't hurt to get the insurance and it won't hurt to get a good medical exam (the only way to tell, after all,) but keep in mind that human nature can play tricks on the mind...JMO Cindy

 

[shopathonic]

If you need to get insurance in order, that might indeed be a good reason to delay seeing a neurologist who specializes in neuromuscular disorders. But as far as getting an answer to the main concern you voice in your original message: "how worried we should be"? No one in an Internet chat forum can give you a definitive answer to that--only conjecture. Only a thorough exam/evaluation by a neurologist who specializes in neuromuscular disorders can give you an answer to that question. So if your insurance, etc., is already in order, I think you'd be well advised to see the neurologist ASAP to put your mind at ease. If, however, logistics require a delay, so be it.

Best,
Jeff

 

[Al]

No one here is trying to diagnose anyone. An opinion is usually given in the hopes of alleviating some of the fear and stress related to having distressing symptoms. I'd rather say that someone probably doesn't have an MND than tell them they must rush off ASAP to the nearest ALS certified clinic. Maybe that can be done in California but here in Canada and probably in most states there are steps to be followed. Unless you are filthy rich and can go anywhere you please and see any doctor you want. Most of the people here are just plain folks or else they'd be at the fancy expensive clinics getting advice there not asking for free help and advice on an internet forum. As is seen here time and time again. Going to the fancy clinic doesn't always end in a diagnosis and alleviating your fears. Sometimes it makes them worse. By NO means am I saying do not seek professional help but if you have twitches for a couple of weeks for gosh sake don't panic and start calling the Mayo Clinic. At least try to have a Merry Christmas.
AL.

 

[shopathonic]

Here's my take on this--people on this forum can offer reasonable degrees of reassurance based on personal and comparative experience, and that can be of some value, but no one can here offerthe definitive reassurance of a neuro exam. All I'm saying is that if that is what someone is seeking--reassurance for worry--by far the best policy--logistics and other considerations aside, of course--is to see a neuromuscular specialist as soon as possible. Chances are, in a case like this, he will rule out neuromuscular disease in an authoritative way and thus make wifey and her husband much relieved and much better able to enjoy the holidays. As for availability of a specialist, wifey and husband appear to be in New York City, home to several of the best hospitals--and doctors--in North America. If they are covered by a good medical-insurance plan, they can see a top-notch neurologist within a couple of weeks for only a minor co-pay--somewhere around $20 to $50 tops, based on most plans. If they don't have such insurance and would have to pay the full toll of around $350, that, of course, would give pause and a more serious reflection about costs and benefits. The bottom line for me--and this is only my opinion, to be sure--is that if someone is becoming worried sick about the possibility of ALS, the reassurance to be gleaned from a chat room is real, but passing and minimal compared to an OK from an MD. The only way to dispel this worry entirely is to be examined by a neurologist who specializes in neuromuscular diseases. And since that was wifey's main stated concern in posting here--how worried she and her husband should be (not the status of their life or medical insurance--although those might indeed be valid considerations for them)--I think that a medical consultation is the best cure for that worry. But only she and her husband know all the variables--insurance status, medical policy, etc., etc.--that might influence that decision. Again--just my humble opinion.

 

[Al]

Makes sense to me but we hear horror stories up here that most Americans have little or no health Ins. and end up mortgaging houses to pay medical bills. That was part of my reasoning for holding off if the twitching has only been a few weeks with no other symptoms other than he feels he has twitching and arthritis like feelings.
AL.

 

[shopathonic]

wifey--
I know of a top-flight neurologist in New York City who specializes in neuromuscular diseases and accepts most insurance plans--hopefully yours, if you have one!

Here's his complete information:

http://www.nyp.org/FPHTML/1168360135112.html

Best of luck,
Jeff

 

[shopathonic]

By the way, Al, on US health insurance in general--some 45 or 50 million Americans have no health insurance--an obscenely large number. Everyone 65 or older is covered by Medicare, and poor people are covered by some variant of Medicaid--I think the formula for that varies from state to state. In many cases people on Medicaid do not get the same quality of care that people get with private insurance or with Medicare. Most people in this country are covered, but much of it is employer-based, not portable from one employer to another, and way too expensive. The United States spends twice as much per capita on health care as any other advanced industrial country, but its average life expectancy is no better than those other countries--in many cases, not as good. I firmly believe that this country should expand Medicare--an enormously successful program--to cover everyone: in essence, a single-payer program of the kind you have in Canada, but extended from the elderly to all citizens in this country. It would save a huge amount on private-insurance profiteering and overhead and would finally allow the United States to join the rest of the civilized world--right now we're the only industrialized country without a national health-care plan. Again--just my opinion, and off-topic for the most part, admittedly--aside from your comments about health care in the United States.

Jeff