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kmendsley

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Firstly, I am frustrated. I even waited two days before I wrote this so it wouldn't be too bad.

I went to neuro on fri. This is the one that saw me a year ago and said 'lets wait and see'. Unfortunately, also the last time I went to this neuro my mom tried to convince her that it was nothing more that I had but stress...yeah...my mom lives in complete denial and can easily 'persuade' others that she is right in her thoughts. I showed up on fri, without my mom this time. She looked and said, yeah well you have definiately progressed but 'not enough'. What the hell is not enough? It's not enough that I lost 1-2 inches of muscle in both of my legs. It is not enough that my talking now sucks, my walking is almost impossible, I can't even left my left foot anymore with footdrop...it just drags on the ground...etc. etc.

I am mad. This was supposed to be the big appt. where the neuro from my stupid medical group 'agrees' and cofirms the diagnosis so I can get disability. What does she do instead. 'Hmm lets put you back with physical therapy. "Something just went wrong with your connection in your brain"...what kind of diagnosis is this?,Or it must be stress like your mother stated. She told me one year ago that she would wait one year to see how I do. And here I am progressed so much, and she doesn't do anything! I HAD to make her even measre my calves....and that was my chief complaint!

How am I stresed? The only thing that stressed me out was this dumb appt. I work 5 hrs. a week and the rest I sit on couch sleeping or doing light physical therapy stretches.

I asked for a second opinion. She was mad and walked out of the room. Believe me, I would hope to God that maybe I don't have ALS, but something is definately wrong with my body and it needs an answer better than 'stress' and 'lets wait and see'. At the rate I am going, I am not going to be able to walk into my next appt. but crawl. Do you think everyone will take me seriously then? Oh yeah, being young sucks as well. Your symptoms are always chalked up to - eat badly and stress. Not all young people wreck their bodies...Don't assume...as in the world...it makes an ass out of u and me.
 
A doctor that gets angry when a second opinion is requested is just unprofessional.

I'm sorry you are so frustrated. It sounds like a second opinion is definitely in order. I hope you find the answers you need sooner than later.

Hang in there!
 
I am so sorry to hear your appointment did not go well at all. Maybe time to see someone new.
All I can say is I totally understand, Docs can be so uninformed about this disease that say the stupidest things! I've heard so many now it is laughable...We seem to know more than them, as we are living it, they NEED to listen to us.....It is as if we have to take THEM by the hand and lead them to getting the answers we need. When we need comfort and direction from them, they are the "Professionals"?, why is it so difficult? I just dont have the answer. But I am sending Big ((HUG)) your way!
Tomarrow is my turn with Doc again, will keep you posted...
 
Sorry kmendsley, it can be frustrating. You've probably told us, but have you seen an ALS specialist? We all hope you don't have to deal with the beast, but I wouldn't accept "let's wait and see". Get a refferal and explain your situation, get any tests you need and in the end at least you will know. Good luck
 
your experiance was worse than mine. emg and nct in oct 2009 with no discussion of results. dec 2009 finally saw the neuro and she said i suspect you have als. asked her why she didn,t discuss this with me in oct and her response was "you do know i am very busy" that got me a new neuro in jan 2010. get a neuro immediately
 
I thought the place I was going was an ALS clinic but that is just a speciality division of the neuro dept. ...that I am not too confident in now obviously...that they have. I have been given a 2nd opinion through a dr. who specializes in movement disorders and parkisons. We will see where that goes. I wish my insurance would just agree to have me go where I need to go to get diagnosed instead of doing this whole song and dance that they have 'plenty of dr.s to help me with my problems'. yeah right.

Honestly, I just wish I could hop on a plane to the nearest mayo clinic and do it that way.
 
This is the pits...there are others suffering from the same thing you are...incompetent neuro who are insecure to give the firm diagnosis of ALS. I went thru this, but when I asked to go for a 2nd opion, my neuro was happy about it...as he had never seen a real live case of ALS. SO I came to Seattle to the ALs Clinic, and in 3 days I had a firm diagnosis. I feel your frustration...hang in there!
 
Sorry you are being put through this Kels! I sure wish the Doctors would learn more about als, and would either confirm or tell you no als.
 
You may want to check with the nearest "certified" ALS Clinic. I'm pretty sure the MDA will pay for the exam and tests (unless they've changed their policy due to the economy), if your insurance won't. Look on your local ALSA page on the net and find a clinic near you. Then get with the MDA and ask for their help. It won't hurt to ask.
 
You live between San Bernardino and Redlands don't you? The nearest ALS clinic is at Loma Linda. Now convincing your insurance company...

I would complain to your medical group. You need answers and you have a right to answers.

(((Hugs)))
 
hi kmendsley,i 100% feel for you because i too have gone through the same.
i kept telling myself "whatevers wrong will show itself in the end".............it does.
if i get a doctor like you saw then i do not go again,i dont have the time or energy to play games with my life.
i hope you can find a neuro more deserving to look after you.
(((hugs)))caroline
 
You have every right to be mad as hell. A second opinion is your right, it is your health. Get a new Doctor immediately and report this Doctor to someone.
 
My mom struggled to get a diagnosis and because of her fast progression she had pretty much every symptom on the list. She had both limb and bulbar onset at the same time. Do you want the kicker? We have a very strong family history of ALS even in the face of all that the neruo kept chasing things like MS, a stroke, you name it. It wasn't until we got ugly and demanding that he would entertain the ALS possibility.

I really think what it came down to in her case was the doctor simply wasn't listening to her.

The medical profession is just so horrible every patient needs an advocate for them.

While she was sick I spent countless hours being downright pushy with doctors and nurses who didn't put the patient first, didn't listen and didn't do what they should have been doing. It was all so frustrating.

5 months after my mom passed my son was born and spent 4 weeks in the nicu and I dealt with incompetent doctors all over again. I just have been amazed at the gross incompetence it is more widespread than I ever imagined. I think they are all chasing money and doing just what it takes just to keep making the money.

Now my grandfather is in the nursing home and almost daily we are dealing with poor care, uninformed and incompetent doctors its is a broken record. I spent all morning wondering how I could possibly open a nursing home possibly even non profit that provided excellent and compassionate care for people.

You have to pay attentions, do your research, get loud, and be heard or you will suffer.

**steps off soap box**

kmendsley, I love California, I think is a trip is in order, I need to speak with your doc :)
 
My first Neuro did all the right things by sending me for all the proper tests. (CT, MRI, EMG, NCS, and Spinal Tap) However, when he decided to tell me it "Might" be ALS, he just said you will die in 18 months and come back to see him in 6 months. No referral to ALS Clinic (of which we have two here in Jacksonville - Mayo and Shands) No mention of a support group or even brochures given to me as I was dismissed from his office.

Fortunately I had met a very kind, compassionate Neuro at Shands during one of my tests and went back to see him. Dr. Pulley immediately enrolled me in the clinic and made sure I had access to every possible need to work with this illness. There is a lot of help out there......including this great forum.

Kmendsley, dear, As soon as possible get yourself to a doctor that has your best interests at heart.
 
Magpuff, that Sounds about like my mom's diagnosis. It was pretty much "Yep you have ALS you're going to die, there's the door." It wasn't even a doctor who told her and when she asked to speak to a doctor they told her no and sent her on her way. There should be immediate counselors available when telling a patient they have a terminal illness.
 
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