Joanne such is the state of diagnosis today for PN for many patients. There is a lot of trial and error and educated guessing. Im surprised the doctor wouldnt want to do a lumbar puncture to help maybe nail down or eliminate possible causes. It can show presence of markers for autoimmune antibodies, lyme, meningitus, bacterial infections, white cells, and more. I had it done and it really is not as big of a deal or as arduous as it is made out to be. A nerve biopsy on the other hand is invasive and usually leaves permanent numbness and or pain in the area cut.

A third opinion might not be a bad idea either. sometimes you have to get a few, research yourself and then decide. When my wife broke her leg and it wouldnt heal after 2 years, she had to go to many different orthopedists and get opinions on what to do which often contradicted each other. They ranged from continuing to wait to heal, to external fixators, to plates, to rods to amputation. Medicine to a large degree is still an art rather than just a science.

Joanne,

I think it is a matter if IVIG is the right choice for your husband. It sounds like the neurologist who knows him best feels it is not. Your husband is 77 and I guess you have to decide what you feel is reasonable to subject him to.

IVIG is reserved for people who have no other options to remain functional and stay alive. Age likely does affect the doctor's decsion. It is somewhat 'rationed' for cases that will receive the most benefit. The younger you are the better the chances of getting it. The more motivated you are, the better the chances of getting it. The more inflammatory markers you have, the better your case is substantiated, the more likely you are to get it. There are no formal panels like there are for transplants, but it seems the medical/insurance system, kind of 'self limits' IVIG.

IVIG is not likely to be given for Alzheimers. Keep in mind that IVIG costs minimally, $96,000 per year, not counting loading dose. This is at the cost of roughly $8,000 per month x 12. Loading doses add an additional $32-40,000.

The insurance industry or medicare would be bankrupted if it paid this. There seems to be some kind of unspoken agreement of when it is used and paid for.

I do understand the issues with Alzheimers, both my grandmother and mother had it. I am high risk for it. That is not why I get IVIG. I get it because I have an extremely high ANA (antinuclear antibody titer) and a diagnosis of autoimmune disease. I have antibodies that are essentially eating away at various organs, among them the nervous system. I don't expect to keep it my entire life. I suspect at some point they will tell me I don't meet their criteria and the disease will run its course. My system is so compromised that the doctors are very reluctant to put me on the chemo like drugs to suppress my system for fear of me going downhill from side effects. Prednisone would zap my bones and I am still fairly young. That said, they may still add small amounts to supplement IVIG. I wish I didn't need this, and I wish there were other options.


My neuro, like your neuro, is extremely reluctant to prescribe IVIG, and does so only when there are no other options.

It is akin to a transplant in some ways....not every one who could benefit from one, gets one. It it one of those treatments that once started, when does it end? It is a 'heroic' effort to stop inflammation. I would consider it as serious as chemo. IVIG is a last resort. It isn't given for idiopathic neuropathy.

You are right. It is serious stuff. It is basically a blood transfusion every month, more or less. With all the concern that a blood transfusion brings.

Yes, one can get renal failure, that is why they do kidney function tests monthy. The older one is, the more likely it is that this will happen. It is a huge amount of protein.

Most neuropathy is slow moving....often small fiber. Your husband could get a SKIN biopsy for small fiber, but, in general, they simply give Cymbalta or Lyrica to help the pain.

Cymbalta is an antidepressant, but a different one than Effexor. Cymbalta is duloxetine which resembles Prozac (fluoxetine) and Effexor is venlaxafine? MrsD knows more about this. She is very knowledgeable about drugs. True some people can't take these drugs, me among them, but, I am not typical.

Lots of people do fine on these drugs and their neuropathy progresses slowly if at all.

IVIG is not used for pain. It is used to try to salvage function and even life.

If you don't get IVIG, it will still be fine. There are other medications to control pain of neuropathy.

From what your doctor says, it sounds like the neuropathy is not likely to affect his function or lifespan according to the doctor that knows him best.

I wish you and your husband all the best.

Both Effexor and Cymbalta are combo antidepressants.

They work on two neurotransmitters...norepi and serotonin.

They are called SNRI's not SSRI's.

The only difference I can see in pharmacology between the two is that Cymbalta can cause liver damage. Cymbalta is being heavily promoted by Lilly, hence all the doctors respond to the diabetic nerve studies that are presented to them. But the same doctors do not really understand or compare the drug to Effexor.

If someone does not do well on Effexor, they will most likely not do well on Cymbalta, and in addition are placing their liver at risk.

Some dementia symptoms in the elderly can be due to low B12.
http://www.aging-parents-and-elder-c...eficiency.html

A blood test of 400-500 minimum should be done. Anything lower than these numbers should be treated. Some doctors call 200-300 normal, still in this country with our antiquated lab ranges. So make sure any testing done, the results are actually given to you. Another test which shows if B12 is not working in the body is called an MMA test.
I have an informational B12 thread on this forum at the top of the page. This supplement is pennies a day when done carefully, and can have life changing results if the patient is low.

Not so easily found now tho.
Things that make the case tho are as follows in terms of test results:
Whole slew of blood work - basic metabolic, full antibody blood workup, specialized autoimmune work ups, sometimes even cancer and other workups. Before I was diagnosed? I had about 15 vials taken prior to a preliminary diagnosis, with a recommendation of a spinal work-up for specific immune 'markers' and also blood work for anti-body action/reactions to some components in IVIG. So, at a date about 5 weeks after the first bunch of vials? Got a spinal work-up done in the neuro's office and then toted the vial to a near hospital for even MORE blood work [about 8? I think] which was sent off to area labs and the Mayo Clinic for testing.
Other tests that contribute to diagnosis are the trail of EMGs and NCV's [nerve tests -one with the probes the other with the topical sensors]; MRI and Cat scans w/&w/o contrasts to rule out skeletal issues such as spinal nerve compressions or who knows what else?
So, essentially Blood work for dietary deficiencies such as Calcium or B-12 or excesses such as B-6, nerve tests, X-rays, MRI's, cat scans, and spinal fluid tests. Leave it to your doctors to coordinate the tests, explanations and all w/the insurance companies....Always tho TRY and get copies of the tests being done? Just so YOU know what's being done. Depending on the conditions and diagnoses? There is a 30-60% chance it can help. - All everyone has said so far is right? - I'll post more later as you'll have even more questions! Take care in the meantime? Hugs to your husband too! - j