Wife of neuropathy patient
 

Hello. I have been reading here and there is some good information. My husband was recently diagnosed with sensorymotor demyilating and axonal pherprial polyneuropathy (or thats what the EMG report says) EMG also said something about possibility of spinal nerve root problem. he has a suspected brain/ nerve condition called central pontine myelinolysis. He has as a complication of ,or in adition to these two conditions, dementia, speech problems and a movement disorder.

First of all I would like to say that my husbands conditions were exasperated by or possibly completely caused by a history of ALCOHOL abuse. I have reached out for support and or information on another message board, (which shall remain nameless because I do not point fingers or hold grudges) and got much ridicule because my husband was "asking for this". If this group conscious has any problem with the fact that ALCOHOL was involved, please let me know. I will be happy to gracefully leave with no ill will. :) I just can't take anymore people looking down there noses at me right now in addition to all I am dealing with.

Did anyone have their Neuropathy come on kinda suddenly? He had complained of his feet and legs hurting for years after working long shifts. He worked two jobs a lot so we assumed this was why. He also had restless leg type sympotoms for years but he never mentioned it to his doctor. This was the only possible clue we would have had to the neuropathy.

He also has had some short term memory trouble for 15 plus years that was getting worse. And he had an MRI in January that showed some white matter lesions. These were dismissed as small vessell ischemia. He was given a sleep study that showed sleep apnea and prescribed a Cpap and told if he slept bettter maybe his memory would get better. It hasn't.

In May he was hospitalized for alcohol withdrawl, again. He WALKED into the hospital. He was WALKING with a walker , very unsteadely, at the hospital. He was admitted to a physical rehab facility after a two week hospital stay. He got worse while at that center. He developed right arm tremor, drop foot in right foot and a very minor intermitttent speach problem. I litterally watch him deterioate slowly in a matter of two weeks.

Since he has been home he is doing outpatient physical and occupational therapy. He is slowly geting worse.His memory is much worse, his speech is worse, he now has a movement disorder where he has intermittent involuntary movements in his neck, touge, eyes head,trunk and arms. He is still in the chair. His physical therapist has stopped having him walk with her because he is getting drop foot in the left foot and his gait is worse. Last week she has just been focusing on getting him to stand in proper alignment. He has lost the percepion of where his legs are in space also.

We have been to physical therapy, occupational therapy a medical test or a doctor every day since June 20th. Last week hey decided that the white matter lesions that were in the Pons in the MRI in January and June were probably the CPM.

It has been so difficult to watch my husband go down hill.

So I know this is the PN board. Did anyone have it come on fast and get worse fast?

Yes, there are--
 

--very rapid onset/acute neuropathies (although those linked to alcohol generally aren't among them); these are usually traumatic, toxic, or autoimmune in nature.

It's certainly possible that your husband has neuropathy with something else superimposed; none of us are excused from being "co-morbid".

My supposition, given what you've said, and given the symptom onset and rapid progression, is that this may be more due to the myelinolysis, which is a condition of the central nervous system, rather than the peripheral one. But alcoholic toxicity can have systemic effects across the body, and I suspect he'd likely have some nutritional deficiencies (common in alcoholics) that may be contributing to this as well--vitamin and mineral deficiencies/imbalances may be involved here, and these certainly result in neurological symptoms.

I'd agree with Glenntaj about another cause other then alcohol alone. It's known that doctors will grab a hold of something like alcohol abuse and not even look beyond. You'd be best to pursue a thorough workup for autoimmune or other possible causes. Are there other symptoms that you may not have associated with his neuropathy...like dry mouth, eyes, unusual fatigue, joint pain etc??

The purpose of this forum is not to judge. We offer suggestions and information about any & all types of PN, regardless of the cause.

You should take some time (and it can take a while) to review the stickies at the top of the forum. Has his B12 been checked? The level should be above 400 according to new standards. Don't take the doctors word for (it's normal), get the results/figures.

My heart goes out to you, you must be beside yourself with worry. Just keep in mind alcoholism is an illness, your husband doesn't want to be like this. My dad was 32 yrs sober before his death but it took a long time for sobriety to come around.
Keep strong and as you have already been advised supplements are the way forward.
Best wishes and remember to take care of yourself.

My sensory neuropathy was linked to a lack of vitamins because of alcohol abuse. The favorite thing doctors like to do is tell you that it's 'toxic neuropathy' and there's nothing they can even do for the pain. They'll tell you neurontin won't work (it does for me) and basically tell you you're screwed. I don't have anything near what your husband has, and that's exactly what I am trying to avoid by quitting alcohol. But like I've said before, it still hurts like hell, and it's 24/7, as all neuropathies are. He sounds like he's much farther along, though. All I can say is good luck, another soldier succumbs to the booze. Probably a good man who is suffering immensely. My heart goes out.

Thank you all for your kind words. Since this seems to be a very accepting group :grouphug: I will get honest and add that there is a toxic element involved also. I apologize for not disclosing it in the begining. I just wanted to feel everyone out on the alcohol thing first, because of the way i have been treated in the past by other boards and even doctors. Aparently on this last binge that brought him back into the hospital again....he had drank some RUBBING ISOPROPONAL ALCOHOL the last couple hours of the week long binge when he ran out of booze.

So I guess that would be the toxic element? Maybe why it happened so fast.

another strange thing. He has NO PAIN :Scratch-Head:. except for the pain he would have after beimg on his feet all night after work before this happened? Now,every once in a while he will say his ankle foot orthosis is rubbing a spot on his heel if he wears it too long. But he has no pain in his feet and legs.He is on no pian meds. He complaines about his lower back pain from arthritis of the spine and his left shoulder hurting where he had it replaced in september, but not his feet. He says when he lays down if he crosses his ankles or any other body part while in bed they tingle, but no pain. I try and check his feet and legs over several times a week. I worry he could have a sore from his ortohsis start and not even know it. Is no pain a sign that the nerves are dead or something? I see most on the board expierence signifigant pain.

he has an appointment with a rheumotoid doctor wednesday because of an ANA blood test. results that were off. we have been waiting since feburary to get in at this doctor.


he has been getting B-12 shots since March (the one that starts with the C) . Last week he had another B12 blood test two weeks after his latest B12 shot to see where his levels are.His level was 240!!! while recieving an injection 2 weeks prior!! and we were told this was normal!!!!!! :eek:. Guess I will try and start the by mouth B-12 now also!

He has lack of appetite and has had a full exhaustive work up for that last fall. They found chronic pancreatitis. I have a very, very hard time getting him to eat. Last week he went on 4 days with just a hamburger plain no bun and a couple cups of coffee. I need to check his weight again. I keep telling doctors he won't eat or even drink ensure. But until he looses weight they won't do anything. He is on b12, b6,b1, multivitamin, vit d (because he tested low on that too) and i read the pancreatitis makes it where you don't absorb stuff very well even though you took it in. I am sure he has multiple vitamin deficencies.

and bruce- he is a really good man. He served his country for 8 years. He was a police officer for 18 years. He trained half the guys in this county. he took his job seriously. he never, ever drank on duty, ever. and he was never accused of doing so even though they all knew he had problems off and on with drinking. he was a binge drinker, not an every day drinker. he'd call in sick before he'd go in with one bit of alcohol in his system. I am not saying that his work didn't suffer, because he'd feel yucky after too much to drink and he would go in sober but not be 100%, so it did suffer sometimes. it has been so sad to watch him slowly ruine his life and health while me and the kids watched helplessly.

Thanks again to everyone. i will get busy reading some more sticky's!

I am not an expert on toxic neuropathy and supplements, but MrsD is extremely well versed in both. She is on vacation right now (with no computer access). She checks in every now & then when they go in town so maybe she will see your thread.

I personally wonder if there may be an autoimmune component if the ANA is high. I'm glad you'll be seeing the rheumy this week. Make sure to inquire about the level and pattern of the ANA, as both are important. It is crucial to bring up ANY symptoms (joint pain, fatigue, rashes, etc) whether you think they are important or bothersome or not.

Of course alcohol is known to damage the pancreas, but there is also an autoimmune pancreatitis that may be part of the problem. Either way, his absorption would suffer...even supplements can be difficult to absorb.

I know from MrsD that a B12 level of 240 is NOT normal according to the new standard, yet many doctors aren't aware of these standards. Also, someone with neurological problems should maintain a much higher level. Many here have levels around 1000 or higher. And MrsD always recommends the methyl B12 (on an empty stomach).

Keep us posted.

You are a good wife too, hang in there.

judi

Have you every heard of spinal cord stimulator. It helps eleviate most of the pain in patients with peripheral neuropathy.