Accepting Profound Peripheral Neuropathy
 

Hi NeuroTalk Support Group:

Four years ago I was diagnosed with profound peripheral neuropathy. I had so many problems going on I did not KNOW I had it until I begin piecing everything together.

Recently I was retested by an outstanding Duke neurologist. The tests results were the same as they were four years ago.

I said, 'well at least it hasn't gotten any worse." And he said "It cannot get worse. When the nerves make NO RESPONSE, they can't do worse, they can't make less than no response."

I was dumfounded. And I realized that I still have not accepted my neuropathy, after all these years. I still think I can overcome it, that I can somehow get better through my own efforts.

Of course, I haven't. And if I've been thinking I could do it, then I have been feeling like I have been failing to try hard enough.

Today is the first time I realized that if I go to the pool and exercise, and sometimes exercise in the gym on the machines, I'm doing the BEST I CAN.

I don't walk with a walker or with a cane. When I go out, I immediately sit down. I can't stand for any time, or walk any distance. At the mall, I wait while others shop. At museums I sit while others look at the art. I may visit a few galleries, but I sit down between each effort.

My only real outside shopping is at the grocery store, where I have the best walker in the world: the shopping cart!

If I do some grocery shopping, and go to a book group meeting, I have to rest for the entire day. I have other conditions: immune mediated. Both auto immune conditions and an immune deficiency. So I tire very easily, and of course any movement takes enormous effort and concentration.

I want to hear from others who have this condition. How do you manage the expectations of other people?

I also have many episodes of great fear, because the messages from my legs to my brain travel so fast, I am already afraid before I realize that I've just stepped on an acorn! And if someone comes up behind me when I'm standing, I am frightened, my perception is all scrambled. I cannot back up, walk around things, walk sideways, or turn quickly.

What do you do to make your life better? Should I be using a cane? It just seems like another thing to handle and trip over!

Hugs, Elaine

Yes, you should have a walking stick at least. Canes are difficult IMO.

The walking stick alerts others, and they will avoid you. Huffing and puffing some helps too. ;)

I am better in warmer weather, and terrible in cold weather. Seems the cold freezes my large muscles in the thighs and back.

While I don't have much pain from PN compared to my arthritis, but it is all very depressing. So I keep busy with things, and that helps.
I work here on the boards, I am clearing out my studio and getting ready for some major art work, I play with the cats, do some Ebay shopping for supplies and material for still lives... and just keep busy. I pace myself, move around the house, play a few Angry Birds, do the meals, etc. But hubby shops mostly now for food and other things. He is retiring next month, so he won't be griping so much I hope. There are still a very few shows I watch on TV, but I do go to bed early and rise early. That is my new normal. I've had to avoid most of the CNN news, and other downer type shows. Violence makes me ill and depressed, so there are not many TV shows I can enjoy anymore! :rolleyes:

When Feb rolls around I'll be starting my seeds for next summer, and that keeps me positive and occupied. I really don't socialize much anymore. My best friend is very busy at her job over the holidays, and we get together in January and springtime. Neither my hubby or I have any family left alive, except for our son, and he is mega busy with his job, etc. sooooo.... we are hermits of a sort. I rather enjoy the peace, compared to my nightmare noisy stressful job which I have escaped from!

It is difficult getting older, and trimming the life down to what you can handle. I totally sympathize. Keep positive, and do the best you can... baby yourself when necessary, and keep on truckin'.

As always, you have the best words, MrsD.

I did try very large doses of Methyl b-12, for a year and a half, every single day. No change did I notice, and no change showed up on the test in November.

I was really hopeful. But of course, it can only help certain types of neuropathy, and I don't know exactly what kind mine is! Not the kind that is helped by rather costly large doses of Methyl-B-12. Now I just take what I have as a supplement daily.

My neurologist really hopes that the copper supplement might make a difference, or finding Celiac's. He's seen people's lives revolutionized by discovering Celiac's Disease and then making the necessary dietary changes.

I'm rooting for him. I really am. I'm hopeful, but not relying on him to find a cause/cure.

I have family here, grandchildren, and a grand beagle. Friends, book groups, activities I enjoy. It's just that slightly nagging feeling that I should be out and about doing things. We worked for causes we support, and my husband did footwork, while I did phone bank work, which is equally important.

I'm finding ways to be myself. It's just that my husband is remodeling the entire house, keeping the yard, playing golf, running with the grandkids…..

My granddaughter can't comprehend that Grandpa is older than Grandma, since he is so active, and she can't do much!

Fortunately at 5'8" i don't get run down when I AM out and about, even without a walking stick.

Mostly it is just the misperceptions that always throw me, the seeing something, thinking I am going to step over it, and then NOT stepping over it. Message relayed, garbled, and not properly executed!

The other odd thing is that I look about 15 years younger than my age of 71. So even my doctors have to verbally remind themselves that they are dealing with a much older person. I look the picture of health, Mrs.D

Well, I guess that's better than looking as bad as I feel on occasion.

I start on IVIG next Thursday. I couldn't manage the subcutaneous infusions weekly, since I had a negative reaction every time. My immunologist is hoping that I'll just have one negative reaction a month, and then have some recovery time in between with IVIG. I liked the SubQ, don't mind the needles, and of course I can't go running around anyway, so I could sit easily while the infusion took a couple of hours.

I had retired early due to severe coronary artery disease, at 58. I didn't get any of the ensuing auto immune conditions until after that…..so I'm 'lucky'. I always say: My osteo arthritis is the most painful, my PN the most disabling, and my CAD will probably take me out when my time is up! The autoimmune conditions and the immune deficiency are just add ons!

Hugs, Elaine

Just saying that canes are difficult as well as a walking stick when you have a balance problem such as I do.

Yes, Kit, I think a walker would be better than a cane or a walking stick.

When the time comes, that's what I'll use. One with a seat, so I can sit anywhere!

Hugs, Elaine

Hi Elaine,
I am sorry you are dealing with this. I too have this and have had it since age 32. You asked about expectations. When I got neuropathy due to a combo of meds and hypothyroidism I was very sluggish and gained weight. I had no energy and i always had heaps of problems (emotional,anxiety) due to this situation and blamed the neuropathy for everything.

Then I went hyper (got off some meds) and went back to my pre-neuropathy weight and started exercising daily. My neuropathy was still there but my outlook and self esteem improved.

It took many years to get like this but I can say that neuropathy may not always get better, but by improving my overall fitness,weight,mindset I was able to cope alot better and also live a fuller life.

I am having a bad PN day today and am in pain myself and have been miserable and zapping all day at work. But I don't have that bottom out hopeless feeling anymore that I used to have because I know that life goes on, and I can make small improvements to keep my self esteem up and not let this illness get to me like it did in the past.

You mention swimming? Excellent exercise for PN, cardio, and keeping muscles toned and supple.

Aussie:)

Thanks so much for the reply, Aussie.

I cannot imagine dealing with this degree of disability so young. I know many do, and now that I have it myself, I KNOW it can be done.

One theory of the cause of my PN is the antibiotic I took for chronic Urinary Tract Infections which appeared suddenly in 2007. The antibiotic is well known for causing PN.

It turns out that I have Interstitial Cystitis, which is an inflammatory condition of the lining of the bladder and occurs in 50% of those with Sjogren's Syndrome, one of the auto immune conditions. AND I have Primary Immune Deficiency Disorder, and lack the antibodies to protect me from infection.

So my PN is the result of a 'perfect storm' of conditions. It sounds like that's what happened to you, too.

I know that I could work with this condition (I'm retired) but can't imagine doing anything that requires much walking about, that's for sure.

Fortunately, I have many tools to deal with depression and weight issues. So my weight is very good, and I get exercise, which is crucial in so many ways.

For example, I'm allergic to the only medication approved for my Interstitial Cystitis (and it isn't considered to be very effective anyway) and the only way I control the pain is by exercising. It really works, and is one motivation for me to get to the pool.

I can still drive, which is wonderful. If I couldn't, I would move to an assisted living environment with a heated indoor pool in the same building. I'm already thinking ahead as to how to keep up my spirits and my health as time goes by.

We do what we need to do, and I consider that we are fortunate that there are some activities and medications to make our lives easier.

Hugs, Elaine

Just a word about walking sticks. The kind found in outdoor stores like REI and eastern mountain sports, hiking poles, have excellent wrist loops. I use one when on level ground like a mall or sidewalk and two on trails. I would have fallen and twisted or broken an ankle many times without these poles. They are lighter than a cane and do not require a constant grip which is impossible for me since hands are affected. They are infinitely adjustable for height, most canes are not long enough for me.

I am unable to immediately know what position my legs are in, the poles help so much with those moments between standing up and regaining control.

Elaine, these are interesting discussions about accepting the disease. For myself, I am just thankful that I was only slightly affected when my children were young. I can easily accept this now that my youngest is 14. I am not sad about eventually needing a wheelchair. I think a lot depends on what kind of life you had before, how independent you were. My husband and I have been mutually dependent since we were 18, and that makes a big difference.

Hi Elaine,
I can understand because I have been in denial for 8 yrs. I have to let in the reality a little bit at a time. I was working at a large hosp/ital in the neurosciences dept as a RN. First it was just numness and tingling-then progressed to me walking like a drunk. I knew then I needed a walker-and still do. I'm curious if you can tell the name of your doc at Duke. I was worked up there-and the.y basically didn't know why or had no offer of any treatment. Then went to UNC and again very nice but nO answers. Did r/o Sjogren's.
Went to Emory. By this time no reflexes and no response on the EMG. I had low thyroid, stressful jOb (gave it up 6 months ofter this started.) poor diet and had been given Avelox 3 months before my first symptom. I finally saw another doc at EmOry-Jonathan Glass, top 10% in nation (according to USNews)in his speciality of neuropathy. He has seen this b4 and sai/d it was autoimmune all over my body and sai/d /it was /in th.e ganglions-no treatment. I've tried diets, supplements, lyrica(bad side effects) and have had small improvements, scary flare ups, but mainly am stable. It h.as only affected my sensory-no motor involvement. My loss of coordination and loss of position sense have been the worst part. And the pain. I use my eyes to ttell my feet where to go and my hands too. The doc just told me I have fast onset of glaucoma and macular degeneration!So you can make it. I don't need as much rest as I did at first. I keep trying to do things before I let someone else help me to keep up my strength. I hope I've helped a bit-I'll be
thinking of you and this site is wonderful support.

Interesting thoughts on walking sticks and canes. I use a cane (have for numerous years). After reading comments here, I may try a walking stick instead.

I have fallen even with the cane, but it's almost always due to lack of proprioception and not knowing where my feet. So I don't know if it would make a difference in falls, but it sounds like it might just be more comfortable and easy to use...particularly to help with general balance issues.

However, with my dysautonomia (particularly orthostatic hypotension) I am unable to maintain an upright position for a length of time...especially if standing still in a checkout line, etc. So I will be getting a scooter for use in public places where scooters are either not offered or just not available (being used by others or the oh, so common 'out of order' sign on them).

It's a difficult adjustment, but one that needs to be made and accepted.