Vent about Permanent Neuropathy

Hey Bosom,

Thanks for info; I will proceed with caution. Ortho doc is saying knee is early osteoarthritis, I know I have that in my back and neck, and have had for a long time, but didn't think it would start so suddenly as it did in my knee. I have had a shot in cervical spine a few years ago that did no good, only caused more pain. Had a shot in back many years ago that did nothing. Do not have osteopenia yet, so will talk to doc with questions before I get shot if I do. I am going on a trip in May and am anxious to be in as good shape as possible for it.

I had cortisone shots to my knees, both before and after my total knee replacement. I never had any relief from the shots, I'm sorry to say.

September~ Good to hear. Many of us attribute our cognitive problems to the Gabapentin.

Apr 2, 2017 07:46AM maryna8 wrote:

HI, Icietla,

You have had a lot of odd happenings on your way through all this, what do you think caused your hair loss? Looks like Femara accomplishes the same thing as the Tamoxifen, controlling the estrogen. Are you still on the Femara? I didn't have radiation, and wasn't really aware it could also cause so much trouble, as in the RIBP; the people I knew having trouble with it mostly had skin damage, which reversed itself over time. Do you think the cancer you had was very slow-growing? Surely it wasn't with you since age 11, but I don't know. I was just wondering where your long-standing fatigue came from.

It sounds like you have had good docs, to help you figure out all this stuff. It's amazing all the things that can happen to us, it's probably a good thing you didn't have to have chemo, it would probably have exaggerated all the things that are already bothering you.

Happy Sunday, Mary

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Icietla writes:

Thank you, Mary. Yes, I am still on Letrozole. The hair loss may be from the Letrozole, maybe from having had four surgeries last year too. I also suffered severe mental distress for a long time after my first mastectomy surgery. Most of the shedding happened in late summer, earlier in the year than a typical fall seasonal shed.

I did not have Radiation treatment either. I was invited to post on the RIBP thread because of having experience with such limited arm use as many RIBP sufferers have while that complication is progressing. I also had no idea that Radiation treatment could be crippling.

Now I will try to make the tiredness, etc., stuff easier for you. [My apology if this is more confusing to you. I was trying to avoid that, see.] I have Subacute Combined Degeneration of the Spinal Cord secondary to Pernicious Anemia. My demyelination has been from other substances that, but for my deficiency, would have been kept in check. Since my PA diagnosis, in now-informed hindsight, so much stuff, mysterious for so long before, has made perfect sense in light of that PA diagnosis that apparently explains so much. It is now clear to me that I have had PA all my life – now I know that there have been associated symptoms and associated clues all through my life, from infancy [always very cold-natured, feeling much colder than others; always very prone to motion sickness; and distaste for meat-eating (in later childhood, I would learn, with difficulty, to eat some meat)]; and later, there would be my tiredness (to give you some idea, it has appeared to most others as Narcolepsy, otherwise as always exhausted, barely dragging myself along); angular cheilitis; gallbladder disease; cervical dysplasia recurring repeatedly over some fifteen years; vitiligo; menopause at age 40 (but I was nearly done with that at age 39); the neuro complications; and still more puzzle pieces/clues, including peculiar GI issues. I had two surgeries near age 11, and very soon after, I was whacked with this awful tiredness that has sometimes worsened, sometimes lessened a bit, but has never gone away. Now it is clear in hindsight that the Nitrous Oxide exposure in those surgeries had put me into clinical deficiency. In the early 1990s my tiredness became more extreme. My health kept declining and finally fell off a (figurative) cliff. By the time I was finally diagnosed in 2008, I had full-blown Anemia and I could hardly walk or talk. My difficulties with language and balance had started about ten years before. [It was not for a lack of my trying, all the failures to diagnose since my tiredness started in 1972. My leukocytosis, known and followed since 1985, has been confounding also.] Even with (usually) adequate treatment since a few years after my treatment started, I have still had Functional Deficiency. It has taken years of treatment and stepping up of my treatment to get my condition fairly stabilized and slowly improved since about 2011, I think (my calendar sense is especially poor as to recent years). Then, while my cancer was finally getting adequately fed so it could finally snowball at a Grade 1 rate, I was becoming increasingly more tired. After my excisional biopsy last year, I was suddenly appreciably less tired.

[This January my red cell count had got low and my red cells too large, and some other deficiency signs and symptoms were again getting worse, so my treatment rate had to be stepped up again. Now I am treated at eight times what would be standard maintenance treatment for an uncomplicated case.]

In short, I was very accustomed to being very-to-extremely tired. Increasing tiredness had been sneaking up on me for decades, especially since the early 1990s, and especially over the last several years before my cancer diagnosis. No, I do not suppose I had my cancer in childhood, but yes, there is good reason to believe my cancer would have been extraordinarily slow-growing -- that it was critically starved for B12 too, even through the first years of my (then still inadequate) treatment. Some thirty years of that cancer would not surprise me at all. Of course I cannot know (have certainty) for how long I had cancer, but my now-informed hindsight about the course of my tiredness, its cause, my under-treatment and then more tiring with (apparently) adequate treatment, then my cancer being discovered, my understanding that its growth would necessarily have long been severely retarded by the deficiency, and my feeling all the difference it had apparently made in contributing to my tiredness – all gives me this strong suspicion anyway.
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See these__ One is a post from BCO__

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Apr 6, 2010 10:41AM jpann39 wrote:

Im glad I found this thread...

I was dx'd with Pernicious anemia in May of 2006 and started weekly shots of b12 as treatment, in Nov 2006 I was dx'd with Stage 2 breast cancer.

I also have the heartburn issue so take prescription prilosec. I asked my dr about the b12 absorbtion and she directed me to change from the daily pill form to a B Complex liquid. I will have a blood draw for counts in a couple of weeks but I feel that the liquid is actually working better than the pill form. I only take a shot every 3 months or so now that I have finally gotten the levels elevated.

I will see if I can find some of the research I did back then reguarding bc and b12. It was very interesting to me.

I cant say that I think B12 caused my breast cancer, but I do believe it made it grow fast enough that I found it easily. I found it very hard to believe at 2 cm lump could show up in the breast that I wash every day of my life over night. It just seemed to appear out of no where one day.

Take care all

Jule

'Gain strength by the positive and don't be sapped by the negative" Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-

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https://jmedicalcasereports.biomedcentral.com/articles/10.1186/1752-1947-3-9295

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Breast cancer, too, apparently wants to consume B12__

http://cancerres.aacrjournals.org/content/76/4_Supplement/P5-05-06

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Having PA increases personal risk for numerous cancer types__

http://www.cghjournal.org/article/S1542-3565(15)00790-9/abstract?cc=y=

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! ! ! NB: But higher B12 levels are bad for persons with cancer__

https://www.ncbi.nlm.nih.gov/pubmed/26724465

http://jamanetwork.com/journals/jama/fullarticle/184898

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So as to my PA treatment, I am damned if I do and damned if I do not.

I have noticed that my feet are so bad at night....tingling, zapping, numb, shooting pains all amped up at night. Its a weird feeling like I have to move my feet or I'm gonna go crazy. Hands too, but not as bad as feet.

HI, Tangand chris,

I find that the more I am on my feet in a day the more they will be zapping me at night....for me usually when I lay down in bed they are okay, it is while I am trying to relax before going to bed that they are zinging. And my legs will be restless and achy. I am not on any medications for neuropathy, but have never said never. I have tried a couple of them and didn't like the effects but perhaps did not give them enough time.

Also as long as I am busy and moving it is not usually noticeable, but when I come to a stop then it is. The problem there is that since the neuropathy has also given me leg weakness, I can only keep moving for so long!

Hi, Icietla,

You have been through a lot in your life, and I am amazed at all the things you have found out about your conditions. That takes a lot of persistence, and a lot of just pure determination to get to the bottom of things. But it seems it leaves you in a place where there is not much to be done about it, if I am reading this right.

The articles on B12 and other B vitamins and BC incidence are just downright frightening. Because guess what is pushed for neuropathy therapy, B6 and B12 etc. as you know. My doc very recently gave me folinate B vitamins, guess I won't be taking those anymore. Good grief, it's just dead ends wherever a person goes with this thing.

You must live in a city, I live very rurally and have to travel a bit to see docs; most of them don't know much about neuropathy and don't take it into consideration unless I really push it. I can't imagine ever getting the proper diagnoses you have gotten if you lived around here. I do hope you can find something to do about your PA, and the other conditions as well.

Bosom, I totally understand your worries and fears, and I share them.

Gypsy, I agree about keeping legs strong, but what is the best way? I tried keeping exercised and doing leg strengthening work for almost 3 months; one day my rt. knee began with sharp pain, then my left knee joined in. I backed off the exercises, saw an orthopedic doc, who diagnosed me with osteoarthritis, but it's not like in bad enough shape to need surgery. I knew that already, but it has never bothered me much before. He prescribed a course of physical therapy and it was so painful I stopped after 2 weeks, I couldn't get my normal life duties done because when I wasn't in therapy I was using ice packs! So this week I am having a shot in my rt. knee, have no idea if it will do any good. Walking very far is hard with this weakness, even though I used to walk at least 2 miles a day every morning. Yesterday, for an example, I did weeding outside. I was either bending over or kneeling, after a couple of hours I had to stop because of pain. I feel like an old woman, and don't know what to do. What do you do?

Sorry if this has been suggested or tried before and it hasn't been helpful, but what about Yoga or Pilates for strengthening legs? I need to start some sort of exercise regime as well. I'm six months post final chemo (had to stop after nine of twelve doses of taxol due to onset of peripheral neuropathy) and already I'm experiencing weakness in my upper legs (are those your quad muscles? I'll have to look that up). When I've been sitting too long or anytime after I've been driving, it's getting increasingly difficult to get up. Also, I have bunions on both feet and I have noticed recently that both first toes are starting to cross over my second toes. I'm sure this has something to do with the neuropathy. Maybe I should see a podiatrist as well. Now is not the time to be getting bunion surgery.

Love the look of the Garden Kneeler. After catching up on this thread I've come to realize that there are many ingenuous devices out there to make life easier

Urge - yes Yoga would be good for stretching, but the best thing to start is just walking. Be sure you take walking sticks or a cane if your legs feel week. It took me over 3 years, but I hope I've conquered the leg muscle weakness. The feet will always be numb, but as long as I keep walking I think I'll be able to keep some muscle tone. Note - SOME. I won't be hiking up mountains anymore. It would be REALLY bad to have to start all over.

Urge-To-Wander,

Yes, your upper leg muscles are quads. I hope your neuropathy symptoms are not permanent. I don't think anyone can answer your question about if it will be or not, nobody seems to know. My acupuncture doc told me that with neuropathy, sometimes nerves are damaged, and sometimes they are dead. If damaged they can rebuild, if dead they will not. However, sometimes there will be new nerves grown, according to him. Not sure if that's correct, I've heard different theories. My upper leg weakness started very suddenly about a year after finishing chemo, although I had other neuropathy symptoms since my first dose of Taxotere.

I have a bunion on one foot, I had it before the chemo and neuropathy. The toes crossing is one of the things that happens eventually with a bunion, it probably does not have anything to do with the neuropathy. I had surgery on the other foot years ago and removed the bunion there, I wish I would have gotten both feet done, in hindsight.

Minus, I think you have a good plan, just to be determined and stick with it. I have found I have to ration myself, if I have a lot of house/outside work to do, then I can't walk much on its' own, but just have to do the work. That is what has been so hard for me, trying to accept I can't do it all anymore.

maryna - YES, you're right. The hardest is trying to accept that we can't do it all anymore!!! Or even lots of little things anymore. Not only can I not sew on a button, I can't even thread the needle.

My neurologist told me shortly after chemo that it would get better. However she explained the definition of better was related to where I was at that point. It might only be marginal improvement, but likely something. Or I might see spectacular changes. Unfortunately "better" did not mean back to where I started. It meant only a movement up the scale.

I'm very fortunate that I rarely have pain. I'm resigned to my feet being dead after 3 years, and occasional numbness & tingling in my fingers. That causes no end of problems, like loss of balance when I close my eyes, notably in the shower when I'm washing my hair. Compared to those of you in pain or plagued with severe leg weakness, my complaints seem minor. I'll keep walking as long as I can see my feet & the ground so I don't trip. (sad thought - will this make me a hunched over little old lady barely shuffling along trying to watch every step? - Sigh)

VLH, Personally, I feel there is a good amount of healing that can still occur after the 6 mo. period. Physicians kind of fall back on the 2 year time period...meaning, the neuropathy you are left with at that time is most likely permanent. Personally, (again) I feel there is still a slight amount of healing and improvement that can occur even after the 2 year period. In general, after the onslaught of chemo is over, your body and nerves do their best to recover, but many times our best is not good enough. If you have severe symptoms PFC, the reality is that you might not make it all the way back. People with milder neuropathy have a better chance to come back closer to normal. These are just general statements so, of course, there can be exceptions. You can take 10 ladies, give 'em the same chemo for the same length of time, and end up with 10 (8 or 9 anyway) different outcomes.

Just know that you are still in the healing period. Good Luck on the recovery progress you are able to make!

Minus

"And I did have a physical therapist who works only with hospital patients tell me that it was important to keep stimulating the remaining nerves."

That would explain why my acupuncture doc likes to stimulate the neuropathy points on my feet and ankles. I don't like it when he does it on a lot of points, because it makes things tingle and burn a lot more than normal. But he said it's important to keep stimulation going because dead nerves won't come back, but you may generate some new nerve activity if you have anything there at all. I was in his office today, he did needle just a couple of the neuropathy points, so I will probably have a little extra discomfort from this trip. He said it's good to have some feeling (though being on the receiving end, it's not all that pleasant!)