Neurologist visit today

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karla r

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Neurologist visit, with the new neurologist today. He pretty much poked and prodded every thing from my eyelids to my pinky toes. Took enough blood told hydrate me (as in 13 tubes, where 1 vein quit giving and so they moved to another one to finish). Wants me back tomorrow as a rush for another emg and ncs. He intends to do the entire body. From tongue to eyelids, to arms and legs, ect. I mentioned that I had only had arms and legs done. But he said he noted atrophy and weakness in face, neck, and back. So he is putting a rush on the blood and on the tests. He saidthat although ALS is most likely the cause, he wants to rule out some very rare adult onset of something I didn't quite catch, that usually starts in infancy or early childhood, and mg. I think that one was already ruled out by the other neurologist, but he is double checking. I think he is doing a lot more blood tests than I've had, cause I have never had them draw 13 tubes at one time before. Also had to go get the actual images on disc for my mris and cats from the last 3 years for him to see. The reports were not good enough for him. Hoping it turns up something better than ALS. Will take all the prayers you guys have the energy to send my way. Thank you!
 

Nikki J

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I am sorry you had such a day with another tomorrow but very glad he is being thorough and proactive. To request the actual discs of your scan is good practice as well. Hang in there and will send prayers and strength
 

gooseberry

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Certain muscular dystrophies can mimic als. At one point my pals pcp had that as a diagnosis
 

chally

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hang in there karla sending good energies your way. love ya chally
 

karla r

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Have to go back again Friday morning. He did the emg and nerve conduction today on arms legs and face. Be said it looks more central nerve whatever that means.
 

karla r

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Thanks for the warm wishes, and prayers everyone.
 

gooseberry

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Hhang in there Karla. Make alisst of all your questions. Bring a friend or family member so they all get answered and the answers are on paper. Try not to worry. He did not say you have als. Many diseases affect the central nervous system. Hugs to you, steph
 

karla r

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No, we asked since the other one said probably ALS, he said he couldn't rule that one out, and he'd have more answers after the blood work was back. Ms and several others are already out because mris of head and spine are clear. Others out because biopsy showed no inflammation or antibioties, no vascular problems. Other neurologist said definite upper motor neuron, and some lower motor neuron involvement. She was trying to send me to ALS clinics but couldn't get her staff to send me. That's why I went to new one, to get the referrals. He wants to do most of the tests over before he says he thinks that is what it is to send me there. He mentioned today he may do another biopsy. I just had that one done in May. Just want them to hurry up and decide, before its too late for any medications to help. But, I am also glad he is being thorough, and hoping maybe he will find something else.
 

karla r

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So, still don't know much, other than the zillion blood tests were all fine, except a little elevation in blood glucose. He rechecked my MRI of the brain and saw 1 small white spot that the other doc said was just a small calcification spot, so he is redoing some tests. Waiting on a call for appointment for 3 more tests. He did say he wants to also look at spinal muscular atrophy. He misplaced the spinal MRIs, so he said he'd look at those next time I come in. He also said if it is ALS, I don't need a referral to the ALS clinics because there is only 1 treatment, and he can prescribe it for me.
 

Nikki J

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Sorry you don't have answers fully yet. There is a little more to managing ALS than prescribing riluzole. Pt ot social work respiratory speech will make it easier to get the equipment you need when you need it. If he says he can refer you to these people do you really want to be running around to get your needs met?
 

lgelb

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I agree w/ Nikki that you don't want to be chasing down help, but no harm to find out what he has in mind -- don't know if he's an integrated group or not, who else of the above-named professionals is in the building/complex he's in, what their MND experience is, etc. BTW, social workers are always available via home health once there is an order in, as is PT/OT/RT. And at home is usually where the bulk of contact is, anyway.

The only prima facie downside to not being aligned w/ an ALS clinic is that its pts will get priority in trial enrollment, but access is still possible.

You're going through an arduous process, Karla. No reason not to stay for now w/ the doc with whom you are most comfortable. Of course, you can make an appointment w/ the ALS clinic (if ALS becomes more definitive) to see what they offer, while in the meantime starting riluzole w/ this guy, if you want to.

I just like to remind people that having something like ALS doesn't mean you lose all your care options. You still have choices. And they still have consequences of their own. There is no "one size fits all" way to attack ALS -- it's fatal -- so control what seems fitting.
 

Green Queen

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Oh karla you have had such a rough few days! I wish I could give you a big hug!
It's so frustrating when they have a few things on the table. Hopefully they will give you a definite answer soon.
I hope you are not bruised too badly after all those needles! That's the worst I reckon. My veins like there blood and have a very hard time giving it away but I've never had one collapse like that.
Take care Karla. We are all supporting you.
God bless, Janelle x
 

karla r

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Thanks everyone. He is actually a specialist, I just can't remember if it is ms or MD. And no I really don't want to run around to a bunch of places. He is in an office connected to the hospital, so most of the other stuff may be there. I think I'd rather be referred, at least at first.
Janelle, my vein is normally very good at giving them blood, I have one really good one. The rest are small, usually hurt, and they have to use those catheter type needles to get blood from them. I'm hoping that good vein isn't messed up for good.
It. Will work out, God has a plan I'm know.
a
 

4tloml

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Karla, hoping you get definitive answers soon. You've already been through a lot getting there. Try to keep records of all your test results so they're readily available if you end up seeing someone else (like an ALS clinic). Other professionals will want to send directly for them, but I've found there can be delays and difficulties when others have to collect them, so it's helped when I've had them all right at hand and in order when they ask. (It's also avoided more testing and addressed faulty assumptions at times.)

Wishing for the best for you. Sometimes just naming the beast, whatever it ends up being, brings its own sense of relief--just knowing what we're dealing with and being able to make a plan. Please take care, and keep us posted.
 

Nuts

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Karla, I hope you have an answer soon.

Laurie is right about being comfortable with your doctor, but I agree with Nikki about there being much more to managing ALS than prescribing Riluzole. It bothers me that a neurologist would tell you that there's no need to go to an ALS clinic. Frankly, it makes me question how much he really knows about the disease. If it's ALS, a clinic will provide you with many specialists who will make your life much more comfortable and safer. They will see you during quarterly visits and will suggest things you'd never know to ask about. I wouldn't want to be guessing about what referrals my PALS needed, and you want all of the specialists you see to specialize in ALS. Letting your current d o c start you on the drug is good, but if you get the diagnosis we fear, at least give an ALS clinic a try.
 
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