NeuroTalk Support Groups - Fasciculations anyone?

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Fasciculations anyone? (https://www.neurotalk.org/peripheral-neuropathy/218732-fasciculations.html)

Quote:

Originally Posted by Neuroproblem (Post 1138830)

@susanne, I think this is general attitude of most overworked, "welfare" doctors, they are less investigative than private doctors, or insurance based docs, because they are paid so much more to do thier job, and they dont even do it as much as other docs.

I have to disagree with you, neuroproblem. While your grammar is confusing here, it appears you are saying "welfare" doctors make more money?

In general doctors who take "welfare" patients tend to make much less money than private pay doctors. This is why many good doctors are no longer accepting medicaid patients (and even medicare now).
Many HMO's do take medicaid or medicaid sponsored State insurance plans. These have many rules internally for testing, and medication formularies to curtail costs or deemed unnecessary treatments. So in effect, people who have one of these plans will be less tested and not using the most expensive drugs for treatments. Usually the formularies are determined by the clinic or state depending on reimbursement figures and costs.

I apologize if I misunderstand your post. This being a written format, grammar is important for understanding your postings.

Quote:

Originally Posted by Neuroproblem (Post 1138830)

These were highly paid private doctors, one the head of the EMG department at a large hospital, the other an important neurologist at Johns Hopkins. At the time my insurance had very few restrictions on tests, treatments and medications, and I was offered further genetic testing and a spinal tap but assured there would be no change in the treatment or diagnosis so I elected to let it drop as there seemed no point in further testing, and neither doctor felt that an ongoing relationship would be necessary. Once they know they can't help you they lose interest. I think it is more related to feeling it is a waste of their time and skills than money. My local neuro even said she would be taking money "under false pretenses" if she continued seeing me.

Quote:

Originally Posted by Ragtop262 (Post 1138640)

After dealing with various doctors over about 9 months now, I think much of this comes down to resources. The doctors are so busy. Where I am, it takes about 4 weeks to get an appointment with a general neurologist, who it seems is really only there to screen you to determine what sub-specialist you need to see. Then it takes 4 months to see the sub-specialist, who will do tests that primarily see if you have significant motor deficiencies. If you have a pure sensory neuropathy, they may not find any obvious physical symptoms.

So, if you have something like SFN, there are so many possible causes (it seems like hundreds), and so many tests that may have to be run to rule out each one. Then, if they find the cause, there's a good chance they won't be able to do anything about it anyway (other than pain treatment). So, it seems like they just don't want to spend the time and money, when there's so many other patients waiting to be treated.

I don't want to sound too negative on the doctors, I think they do the best they can. But just like everyone else in the working world, they have to prioritize things. And in the world of neurological problems, sensory neuropathies aren't that high on the list.

In my case, the neuromuscular specialist said he couldn't find any significant physical signs of PN. So, to "reassure" me, he said that whatever I had might be "uncomfortable and inconvenient" but he didn't think it was anything that would be fatal or disabling. (For some reason, I didn't feel all that much better after hearing that.)

I think every patient as the right to fair treatment, whatever their condition is, from a cut that gets infected to a paralyzed arm to MND. I can't believe that 3 neuros, of which one is a professor, cannot tell me why my arm is damaged. Or that they can't agree. By the way, two of the neuros (one is the professor) were private neuros, meaning, I paid them for all of their time and all of their tests, so resources can't be an issue there. I did that because I felt like the 3rd neuro (the one that goes through my insurance company) was rushing me and didn't take enough time.

Quote:

Originally Posted by twitchwitch (Post 1139059)

I can't believe that 3 neuros, of which one is a professor, cannot tell me why my arm is damaged. Or that they can't agree.

It's really frustrating when you can't get a definitive diagnosis. :mad:
But, it seems neurological disorders in general are very difficult to diagnose. Often, there are no lab tests, MRI scans, or surgeries that can tell the doctors exactly why your seemingly intact nerves are not functioning properly. Even the symptoms (such as pain) are difficult to interpret since they can't be physically measured and rely on the patients description. So, all the doctors are left with is making "educated guesses" based on your history and symptoms.

Hopefully there will be breakthroughs in this area soon. Unfortunately, it will probably be too late for most of us to benefit. But, at least our children might have access to better diagnostics and treatments in the future.

Quote:

Originally Posted by Ragtop262 (Post 1139084)

It's really frustrating when you can't get a definitive diagnosis. :mad:
But, it seems neurological disorders in general are very difficult to diagnose.

When I first had strange neuro problems 30 years ago that were defying diagnosis, my neurologist at the time apologized to me. His near-exact words were, "I'm sorry I can't give you a definitive answer on this. Neurology is where modern medicine was about 200 years ago. We have a long way to go."

Apparently another 170 years, and we'll stand a chance. :eek:

I don't know how common the twitching is for neuropathy or what it even means. I have everything on your list except for the weakness while twitching. My whole body especially my arms are weakened from what ever happened/is happening to me, but the twitching is random and migrates everywhere.
My neurologist hasn't said anything about it. He asks me if it is still happening when I see him and he just puts in in his computer. I think he is just waiting to see what happens with me.

I was in the military when an outbreak of mono happened on base. They screened everyone & I was positive for Epstein Bar. I didn't have mono as a kid, but obviously I was a carrier. I think EB is also responsible for my positive screen for Lyme. Western blot is neg.

Quote:

Originally Posted by jenng (Post 1139256)

Thank you for your service!

Quote:

Originally Posted by jenng (Post 1139256)

EBV is very common . You can be exposed, and have no symptoms.

http://www.ncbi.nlm.nih.gov/pubmed/23868878

"The prevalence in 2009-2010 by age group was as follows: 6-8 years, 50%; 9-11 years, 55%; 12-14 years, 59%; 15-17 years, 69%; and 18-19 years, 89%."

The stat I've most commonly read on adults is that 95% will show antibodies for it.

ebv,herpes simplex 1 and chickenpox is very common, almost everyone is exposed to it by adulthood.
@mrsd it was the opposite of what your saying. i meant welfare are less likely to help you.
My neurological symptoms are being put off has mentally caused, which people often confuse both of them.
peripheral neuropathy, unlike autonomic have so many causes, that you cant really pinpoint an actual disease.