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notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Out of desperation due to the darn insurance not allowing me to see a neurologist, I paid for an online consult with a neurologist--hoping that perhaps MS was a more likely diagnosis. His response was:

"Your symptoms are not what is seen in MS. The twitching and cramping with muscle atrophy is classical for AlS. Also generalized weakness. In ALS the nerve cells in your spinal cord and brain die and your muscles atrophy and twitch. this is called s\fasculations Most patients lose weight from loss of muscle and the inability to swallow large amount of food.. things can be done to help this and improve the quality of you life. A EMG is the most diagnostic test at this time... However compression of the spinal cord in the neck or compression of the brainstem can cause similar symptoms this why it is important that you have the EMG,nerve conduction, MRI of the Head and MRI of the neck to make a accurate diagnosis and to treat your condition. THIS MUST BE DONE. I don't know what your insurance is, but I am certain that no medical director would not order these tests based on your clinical finding and the neurosurgeon request. you have three options. Go to a emergency room and tell them about your problems. "

Here was my initial question: "A neurosurgeon said I have major atrophy in my left hand that is spreading to the right. I'm having lots of twitching and severe cramping in both legs and arms as well as weakness. My insurance won't allow the EMG/NCV the neurosurgeon said I needed--he said "Neurological disease" but wouldn't name it. Any ideas what it could be? He has said it is NOT due to the issues in my Cervical and Lumbar spine. I'm getting worse--It takes all my energy just to walk down the steps at my apartment."



He went on to suggest I storm the insurance company office, and contact the MDS foundation if all else fails.

Has ANYONE else had problems even getting the tests done that are suggested? I simply can't afford to pay out hundreds for a private consult with a neurologist--let alone the EMG/NCV. I'm on disability and have a very limited income as I'm unable to teach my nursing assistant classes at this time due to the worsening of my symptoms over the last month.
 
How the heck can any doctor give an on-line diagnosis?
 
Long distance consults are funny things, they are definitionally a little fuzzy because the doctor can't observe or examine you.

If you're worried about ALS, the hinge point is this: did you say you are weak because you feel week, or did the neurosurgeon find clinical weakness on examination? If you have this major hand atrophy, have you lost the use of them or all but perhaps a finger or two?
 
Notme, you also have to have UMN signs to have ALS. So that would be, hyperreflexia, clonus, spasticity, babinski ( don't count hoffmans as it's so unreliable). Did your neurosurgeon detect any UMN signs?
I don't know how your system works, but neurosurgeons often request EMG before they do spinal subset, to detect how badly affected the nerves are and whether or not surgery is indicated. Why can't your neurosurgeon request an EMG and somehow tag it onto the disc problem to get the payment covered? At least you would have an EMG which would tell you a lot of important information.
Aly
 
Aly, Notme said his insurance won't cover a neurologist visit at all.

I would self-pay one neuro visit. If your situation is that serious, it's worth it, and have his office put in appeal for insurance coverage for future visits. Your problems sound like they be stark, obvious, and you'd get support.
 
I will pray that you get the help you need. Praying also for good report.
 
We went to the ER as we had no insurance. After 20 minutes the Neuro agreed with me that Les had ALS, and admitted us for tests. We were there for 7 days, Medicare ended up paying for it all.
 
Here is the mama in me coming out....

You need to start advocating for yourself. You need to get your GP and any other dr you have seen to help you fight your insurance company to allow you to see a neuro. And let me say if there is something wrong with you it is better to pull yourself up by the boot straps now and get things going than later. I have a child with special needs and NO is an unacceptable word when it comes to his medical care. I have had drs see us for FREE because I begged. Also, go to the ER. I am sure you have major medical and emergency with your insurance.

There are all kinds of quacks and whackadoodles out there. Don't bother with online diagnosis from God knows who. If you think you have one of these life changing disorders or diseases don't accept no and go park your butt at the insurance office until you get an answer or the drs office.

We just won an appeal with our insurance that was denying payment on tests we have had during this process.

Stay strong and keep at it.

Kim
 
Exactly.. If you have ALS Medicare will become retroactive 6 months from Diagnosis.. Disability will be processesd under the Compassionate clause.. Surely cannot be diagnosed. without a clinical exam first, among a ton of other rule outs. I am sorry that this forum is turning into Do I have ALS? I can remember when we did not even have this section.
Not to be a broken record, but the people who wanted this section, did NOT have ALS..And have not been here in years...Oh gosh, it is getting ridiculous..
 
What is getting ridiculous? This is the Do I Have ALS section of forum. When people post questions wondering about that possibility outside of this section the threads get moved into this section. I think the forum does a good job keeping this section contained within its virtual boundaries. This section is just one tiny part of a large and vibrant forum. Many enjoy the wonderful varied features of the forum and never visit and/or post to this small section. Is it really that big of a deal what goes on within it?
 
What kind of insurance do you have that won't allow you to see a neurologist? That's just plain ridiculous. Is it through work or through the state? I'd call your state senator and ask for their help in expediting this test to be done. IF you do have ALS , this diagnosis will fast-track you for disabililty, etc. Also call your local MDA office for help, maybe they can get you to a clinic. I wouldn't trust an online diagnosis, they have to SEE for themselves what is wrong, not what you tell them. I'm grateful that I live in a state that has public health insurance available (I pay for it, but its affordable), and has paid for all my MRIs, EMGs, a spinal, all bloodwork, etc. I do wish it would pay for the Rilutek, but I'm not sure I want to take that anyway. I wish I still had the BC/BS that we had years ago, but that's not affordable when you self pay.

In the meantime, have you had your vitamin levels checked? Many of my twitching symptoms stopped once I started taking Vit D, and many people also have low B12 levels.

Good luck,

Helen
 
Sorry did not mean to be grouchy. Sometimes the nervous nellies, get under my skin..
 
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Got the letter from neuro in the mail today. My new diagnosed is highly suspicious for ALS. The letter was to my doctor, not to me. Like an idiot, I read it. His reasoning is twofold: clinical weakness and atrophy, oh and fasciculations.

I'm screwed. At least my GP blowing me off for more than a year doesn't matter, since ALS isn't treatable. I got an extra year of not knowing I was likely terminally ill.

I always tell people to read their charts and all...now not so sire thats such a good thing. Can ALS really be diagnosed based on reflexes, fasciculations, and bilateral (left worse than right) atrophy?

Anyone with any helpful ideas will be appreciated. I was hoping for MS, as it was the lesser evil, but that is not even in the running apparently.
 
No ALS cannot be diagnosed with reflexes, atrophy and fasciculations. ALS is not the only disorder that causes these things. You need a positive EMG showing, denervation etc, and you cannot get definite diagnosis without fulfilling the el escorial scale. It rates it as possible, probable or definite. The reason for the scale being developed was initially for clinical trials....to make sure the subjects on the study does have ALS. That tells me that mistakes in diagnosis are often made, when few areas are affected. I an not saying you do not have it, rather it's too soon to say that you DO have it.

It doesn't sound at all like MS, as you said. I hope and pray you will get answers soon. And I can't keep my eyes off my medical records either. It seldom pays off, but is very hard not to do.

Aly
 
Notme,

Look for the phrase differential diagnoses in your letter. My neuro's letter did the same thing, but MND was listed as a differential along with 2 other possibilities. These first letters to GP usually indicate first impressions and future courses of action. As my neuro continued to investigate, she removed MND from the list. This came in a later letter to doctor. My GP concealed the original differential from me because it was needlessly upsetting. But I sought my own copy of neuro's letter, and in hindsight, sort of wish I hadn't. Why would your neuro send the letter to you directly? Wait....this isn't a letter from the online doctor is it? If it is, you can't take it seriously. This person did not see you in office and confirm via examination that your self-report of symptoms are indeed what is happening with you.

I also don't understand what kind of insurance won't allow a neuro to be seen. I have heard of a lot of bad plans, but never that specialists can't be seen. Maybe the co-pay is enormous, but never that you can't see one. Or maybe that you need your GP to refer you, and he won't, so you can't go. My own insurance doesn't require me to have a referral from GP, but one of the neuros I saw wanted one anyways.

Lydia
 
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