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kmendsley

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Ok I probably get this more than most...because my family simply does not accept the fact that I have a terminal disease...but I am sick and tired of hearing it. "You need to drink more water, You need to eat more at meals." "If you just took in more protein in your diet you would be fine...here drink gatorade...this will make all your problems go away." NO IT WON'T! If it isn't hard enough that I have to convince every new dr. I see that I have the freaking disease when I see them, how bad is it when your own family is convinced that you are just being lazy and un-nutritious. They refuse to see what is in front of them and grasp at whatever they can to cause the problems.

For example, yesterday was a bad day. I got up to go to work and passed right out on the bathrooom floor in front of both of my parents...kind of hard to ignore that one. So I got taken to urgent care later in the afternoon after being force fed in the morning a banana for potassium and pedialyte...as my mother was convinced this had to be the issue. I insisted on going in to urgent care and that she come with. So I get there and get a new dr. She looked at all my records, including vitals...my bp was 90/50...that is why I passed out. So anyway, she did a quick assesment on me for general neuro...failed it all. It helped I think that my mom was there watching me horrendously fail the finger to nose test and have extremely brisk reflexes...etc. Well after the test, dr. said low bp is the least of my worries and I needed to see a neurologist like yesterday. (let me explain that I have had a yes, no, and hesitant yes diagnosis...so insurance is taking there sweet time and appt.s are hard to come by...as I am sure they would like me off of the insurance by the time I turn 25 and then agree I have the disease.

So anyway...dr. was real good and sent emergency stat referral to neuro for me. But as we sit there waiting, what does my mom do but say every possible thing she can think of as to why I could not pass these neuro test. quotes from my mom "She has low bp, well she had shingles couldn't that be it, she has had anemia, I think she is stressed with her jobs, ...on and on it went." Thank you dr. for listening politely and ignoring every statement she said. Anyway...I am sick of it...what is it going to take...me dying and it saying death by ALS? seriously, tired of it. Sorry, just needed to rant.
 
Wow! I feel for you!

Part of me is just hoping that your mother knows enough about ALS that the very thought of you having it would drive her nuts. So, maybe she wants to deny this possibility knowing full well what it means.

I really don't want to believe your mother is flippant regarding the diagnosis you have of ALS hanging over your head.

Here is a suggestion for you. If the next trip to the neurologist winds up with a diagnosis of ALS still on the table, have the neurologist contact your mother to give her the "low-down" on what this means. Better yet, bring your mom to that appointment. Most neurologist just about require a family member to be present if they suspect their findings will come to such a conclusion.

Best of luck to you! I'm hoping eating those bananas and drinking the pedialite will do the trick for you. Well, at least I can hope so, huh?
 
Well, I can relate... My husband's family was in denial for years. Now that the disease has taken away almost all but his dignity, they are kinda convinced! Even my SIL that used to push health supplements (that can possibly do more harm than good) on him has given up on that.

You may not be able to convince them til it's time for them to open their eyes. The time will come.

In the meantime, if you are not too bad off right now, humor them! :smile: (Take their advice on supplements or whatever and just agree to try.) Eventually, they will stop! However, it is very annoying.
 
Well, hon, ALS shouldn't have caused your BP to drop to 90/50--and a BP of that shouldn't have made you pass out. It's a little low--but not dangerously so. (My daughter's runs in the 80/40 range--and she's just toppled over from changing position a time or two)

Keeping your electrolytes balanced does make sense for overall health. Potassium is the one electrolyte that has a very narrow margin for level. Both too high AND too low can affect your muscles--even cause death.

Of course your mom is in denial. It's the first stage of grief and perfectly normal--though annoying, I'm sure. Still; if her going with you to appts makes you more stressed--leave her home!

What all testing have they done on you? And, were any of those doctors specialists in MND? If the answer to the second is 'yes' and the two 'yeses' were from MND specialists--I'd certainly think you've got your diagnosis.

I'm not sure I see the point of yet another neuro. Contact the ALSA and find a doctor listed with them. Or even MDA. When you're getting conflicting information, you need the confirmation one way or another.

I've found a neuro that has promised to figure out what is wrong with me--whether it ends up being ALS or something different. She specializes in MND and neuromuscular disease--and is a co-director of an ALS clinic at South Florida Hospital. I am going to assume she knows her stuff--and take whatever she says and run with it--good or bad.

Personally--I simply refuse to deal with doctors that I don't feel comfortable with. Dr. K was great. I'm sure there are some good places in CA as well. Probably many more than we have here. Get a referral from a PAL here if you need to.

Lots of things can mimic ALS. Even 'dirty' EMGs mean nothing unless other possible causes of them have been ruled out. You said you had a hesitant 'yes' and a 'no'. What were their reasons?

I'm not saying you don't have ALS--but I can understand your mom wondering if there are conflicting diagnosed.

Hope you get it all sorted out
 
Yes;
I have found that even other consulting MD's are skeptical....especially those that I have seen for long durations. No one likes to admit that you have ALS...be patient with your mother. She will be in denial until it cannot be avoided.

I am sorry for your circumstances. It is hard to know you have ALS and then be bounded by doubt.
I hope you can make some helpful connections here on the forum.

- Jerry
 
You know I'm one of your biggest fans, but from a parents perspective it is un fathomable to think of loosing a child, especially to such a slow debilitating illness. I am 40 plus and my mom still can't accept it either. I got a case of protein drinks from her. Be patient.
 
Maybe mom don't know how to face this. She sounds like she is grasping at straws. Moms are always able to fix us and she sounds like she don't want to face reality. My mom get defensive when she don't know about something. Instead of my mom asking questions it's safer for them to put up the wall or shield. I am, sure it is very hard for you not having support where you should get it most. Sounds like she put up like a mental block, don't want to face that her child has this awful disease. Hang in there, she's probley hurting inside real bad and don't know how to deal with it, so she don't deal with it at all. I hope she has knowledge of this disease . Stay strong
 
@notme Oh yes believe me I know that a bp of 90/50 is not low enough for fainting. That is what it finally rose to in the afternoon...some 6hrs. after the fainting that I was able to be released cause it was better(ie higher) When I got in they couldn't even get a reading for the first 20 min. cause it was so low. . on average my bp is around 100/70's. I know about electrolytes too as my potassium dropped to 1.76 last aug. for some unknown reason and I had to be 'brought back' by the emts. They are testing my kidneys at the moment extensivly for problems there. The hesitant answers were because they were dirty emgs every time but the dr.s not wanting to tell me such, and my insurance being real stupid about second opinions outside of the medical group decided to "wait and see" as they put it. I did see ALS specialist - I see her again Jul. 15th for 'follow up' to show my progression. In other words, I followed the health care procedure at this point so that I can be re-diagnosed once again and get the materials I need for ALS diagnosis in july. Now I just got to make it to then, just hope I don't fall too many times on my face in the mean time. Thanks for all the advice folks.
 
If you have an ALS diagnosis from a neuro, you already qualify for assistance from ALSA. At least here in our chapter. A 2nd opinion is recommended -- but a third and fourth opinion seems obsessive of them.

Maybe it is because you have other issues going on- potassium and now B/P. They shouldn't confirm a diagnosis until all those other possible causes of your issues are ruled out.

Good luck
 
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