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karla r

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Learn about ALS
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South Carolina
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roebuck
Well, blood tests came out fine. No lupus, lymes, mg, nor anything that shows up in blood work. So, had another complete MRI of spine, with and without the contrast this time. Absolutely nothing. With the MRI of the brain done in January, he has now also ruled out ms, and any sort of compression, or disk involvement. Today, he decided that the brain MRI needs repeating. As well, he wants to repeat the ultrasounds and echos and Doppler (?) of the arteries in my neck and my brain. All of those were done in January, when they thought it might be a stroke, but he wants his own done. Said since most other things have been ruled out, he wants to revisit possible stroke and or vascular problems. Said "a few strokes and some vascular problems could be causing these unexplained problems." At this point, I'm just kinda weary. I haven't objected to any tests so far, but, to repeat tests that were fine in January seems to me to be grasping at straws. Who has ever heard of the arteries in your neck going from 87 percent clear to blocked in less than a year? Plus, vasculitis was ruled out by the muscle biopsy in May. I know he's being thorough, but, jeese. Anyway, go back for these results Dec 14.
 
Karla, what a pain!
Your merry go round is going break neck speed by the sound of it!
I so wish you had an answer.
Even though a title won't change your day to day living, it will give you a name to give people.
It's gotta be better than saying 'I don't know what's wrong with me,'
That' does wear thin for you after a while.
This is about you not me, but I can honestly say I know how you feel. PLS is my fourth 'probable'.

Take care, Karla.
Keep us informed on how you are going.
God bless, Janelle x
 
Thank you so much, Janelle. It's not just knowing, but, if there is a treatment of any kind, I'd really like to get started before it is too late to do anything. If it is ALS, then, I'd like to try that medication, before I am too far gone for it to matter. And if its not, and what it is is treatable, then I'd like to get the treatment before I am unable to move, because nothing is going to regrow all the muscles I have lost, and am still losing. That is the biggest part of the frustration.
 
Trip back to the neurologist for latest results. No evidence of stroke or any major vascular problems. Slight hardening of arteries which he said were normal for someone almost 50, slight congestive heart failure, which I've known about for 2 years and doesn't cause any problems. They found that on echo 2 years ago when a stroke was first considered.
He didn't order any new tests. He said he will follow me up in 2 months to see my "progression" at that time, and will probably repeat my emg and nerve conduction tests at that time to see progression there as well.
So, I asked what had been ruled out and what is still on the table. He said lupus, lymes, mg, ms, strokes, vascular problems, heart problems, muscle diseases, and problems with structure, disk, or compression of the spine have now been ruled out. He said I do have some peripheral neuropathy in my feet, which I knew because I have been a diabetic for many years. I asked if it was bad and could be causing the muscle wasting. He said no. I asked what tests did show a problem, and he said so far, only the emg, nerve conduction, and muscle biopsy, which showed a nerve problem.
I did ask him what else can be wrong, and he said he doesn't want to speculate yet, he wants to watch me longer.
And, that's where we stand for 2 more months.

Meanwhile, I have a question. I've had cramps in my index and middle fingers for a while. Well, started with middle, and then index followed. Now, when the cramp ends, those two and my ring finger tremble for a bit. Anybody have a similar problem? I told him about it, and he asked me to video it if possible, so I did. He watched and said hmm.. That was it.
 
Karla, what code did he use on your discharge sheet? Did you ask directly if he considers ALS the primary differential at this point and what about your situation, if anything, doesn't fit it?
 
I have asked, and informed him about the first neurologist saying she was pretty sure it was ALS. He said that although it is a possibility, he is not ready to say it is ALS, that he will need to follow me for a while first. He used the code for neuropathy this time. Last time he used the one for stroke, and the time before he used ms, and so on. Each time he has changed it to suit his current thinking. The muscle wasting he says is currently "unexplained."
 
I did not think to ask him what he's found that wouldn't follow with an ALS diagnosis. But I will make sure I adress it that way next time. Maybe that would get me a better answer than "unexplained."
 
Specific questions do have a better chance of a more precise answer and sometimes that can lead to a more informative dialogue. I have found that many neurologists underestimate both our capacity to understand and our desire to know what our diagnosis/ prognosis might be. Some people do better when they let things unfold but others do not. I am definitely someone who wants to know and I think a lot of us are
 
I'm with Nikki. I go in with a written list of questions and go through them one by one. Is this a neurologist at an ALS center? I have found community and neurologists to be ignorant about ALS. Ask about brisk reflexes. Ask about Hoffman's and Babinski's signs. We all know how difficult the diagnostic process is. Wish it didn't have to be. Good luck!
 
No, I need a referral to the ALS clinic, and my first neurologist's office couldn't seem to get it sent. So, I hot a referral to this neurologist, and told him I needed the referrals sent. He won't send them yet. Actually, what he said was that I didn't need a referral to an ALS clinic even if that is his diagnosis because he can treat me. And I do have hyperflexia... I think is the word both neurologists used. I'm not sure about Hoffman's, neither has said that I can remember. But I have Babinski's with my foot. Both have mention seeing clonus, although I'm not quite sure what that is. Neither gave me a decent explanation. Now the Babinski's was only on one foot. My other doesn't respond to anything anymore. It actually can barely be moved even manually as I've lost most of the range of motion in it. It's kinda frozen. But I've not been able to move it for 2 years.
 
I prefer to get them to try to explain what things mean, rather than look it up, because I don't want to get a definition that is off in someway, if you know what I mean. Like "ALS is a treatable disease" as per "doc google."
 
My family is urging me to either go back to the first neurologist and tell her the referrals were not sent to see if she can get her staff to finally send them, or to try to find another neurologist. Frankly, I'm just tired. Of fighting with insurance, and fighting with office staff at the first neurologist, and this one not wanting to answer questions. I mean I flat out said is the muscle wasting caused by neuropathy, and he said no. So I asked what do you believe is causing it, and his answer is that it is unexplained as of yet in his opinion. So I asked if he thought it was ALS like the first did, and he said he needed to follow me longer to be able to say it was, but it is some kind of motor neuron disorder. So, now I just feel tired out, and I'm wondering if it's even worth the effort to try to find out. I was hoping it wouldn't be, and would be something actually treatable, but I think he's just about eliminated everything else.
 
Others may disagree, but I'm with your family. If I was concerned about a fatal disease, I would not wait 2 months, I would not wait 2 weeks, I would not wait 2 days. I would be on an airplane to wherever the best doctor was, and pay cash if needed.

But that's just me. You know how excitable I can be.
 
Dear Karla,

I am so sorry you find yourself going through
this.
I know what a disheartening, helpless feeling, exhausting battle
it can be, from my own personal experiences.
I am thinking of you in your struggle.
I am so much less knowledgeable than others here on
the forum, but in my nonqualified opinion,
I do not feel you are getting the good quality medical
care each and everyone of us deserves.
I know you're so tired...please don't give up...I definitely feel
it's worth the effort to try to find out.
I wiil be thinking of you.

Sincerely,
Laura.
 
Actually, what he said was that I didn't need a referral to an ALS clinic even if that is his diagnosis because he can treat me."

What an A$$!. He CANNOT treat you as well as a good ALS clinic. He does not spend every day of his life researching and dealing with ALS, and he cannot arrange to have all of the other specialists that you need to see all come to you in his office during the same visit. Ask him if he can bring a physical therapist, occupational therapist, respritory therapist, speech therapist, ALSA rep, DME rep, social worker, and technology expert to his office every time you visit. No, I take it back, he's an ARROGANT A$$.

Seriously, call the first doc back, tell him what happened, and get the referral to the ALS Clinic. You want an expert diagnosing and treating you, and that's not a general neurologist.

Karla, can you tell that I'm just a little bit upset for you? You need the best. I understand about being exhausted, but you need to push a little harder and get to the people who can either set you free or make this journey a bit more comfortable (I can't believe I'm using that word in regards to ALS, but yes, things can be harder without the right support).

Becky
 
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