Neuropathy --- my story!!

[Ameka]

I've been reading a lot of posts on the topic of Neuropathy and I find the one common thread seems to be... WE ARE NOT ALONE!!! We are all suffering, in some form or to some degree with this incurable disease. We are never going to get rid of it; we can only try to manage it by whatever means works best for us through trial and error.

So here is my story... I'm a 71 yr. old female living on my own with my cat (thank goodness for him) in Canada. I first became aware of unusual sensations in my toes in 2013. Tingling, pins & needles, sensitive to anything touching them. The scary part was that I knew what I was in for... Idiopathic Neuropathy.... and it was familial.

In 2008, my Mother had passed away at age 89 but for the last several year she complained of the same symptoms and worse.... the diagnosis was Idiopathic Neuropathy. She tried some medications but rejected them. She didn't like the side effects.

So it looks like I'm in for the rest of my life.... 20 to 30 years dealing with this. Thanks Mom!! I start with consulting my Dr. ..... blood tests to rule out other things like diabetes.... try amitriptyline... have nerve sensory tests... specialist referral. All this took over a year and when I finally do see the Neurologist, he looks over my test results, asks me a few questions about my symptoms and pronounces the diagnosis .... "Idiopathic Neuropathy... probably familial... it won't put you in a wheelchair... " just as I thought..... it won't kill me but I will die with it.

I will jump from the time of my final diagnosis to where I am now. In that interval, I started on medications to relieve my symptoms and made many adjustments to how I lived my life to accommodate this disease.

The symptoms have spread.... at first the sensations were primarily in my toes and foot sole. Now the top of my feet and ankle areas are exhibiting similar symptoms when touched.

Presently I am taking and tolerating these medications:

- 225 mg Pregabalin - twice a day.

- 90 mg Duloxetine - once a day.

This has dulled down the sensations I feel in my feet to a tolerable level. Side-effects are being tolerated also. It takes a few weeks after an increase for them to subside or for me to adjust to them.... drowsiness, dizzy upon getting up, a bite unsteady when walking at times.

Lifestyle changes and adjustments to my daily routines are where I made the most changes. Now I make my bed with the top sheet and blanket turned up about 2 ft to allow my feet to be exposed. I have a pillow under legs at my ankles. This keeps my feet elevated so they are not incontact with the bed or bedding. I generally sleep on my back and probably roll around during sleep but usually keep my feet exposed to the air. I go barefoot in the house all the time. When I sit or lay down on the couch, I try to keep feet elevated and not in contact with anything as much as possible. I dread having to leave my house because it means I have to put something on my feet. In winter, it means socks & a boots; in summer it is sandles.... the less touching my feet the better. Fortunately, I tried and like a winter Crocs boot that has a fabric liner with the low cut heel so I slip my bare foot in and go...... just Google it !!

Otherwise I am quite content with my life, living alone with my cat. I never was a 'social butterfly' so the few friends I had seemed to drop away after I developed this disease and stopped leaving the house unless absolutely necessary..... grocery shopping, appointments. I have some family in the city who I connect with at times but they are busy with young children. Other family members are in touch but phone calls and texting. I keep myself entertained with my laptop computer. More and more I shop online for clothes especially ( I hate shopping in stores). I don't like cooking for one, so I have found an online source for individual frozen meals. (available in Canada - Heart to Home - another Google search). Most of my day is spent playing several computer games. Now that I have a large flat screen TV and NetFlix, I'm set with all the movies and programs a girl could want.

Well. that's about everything for now..... as long as this disease progresses slowly and I can find medications to keep the pain & sensations under control; I will just have to live with the Neuropathy.

I know that I will die with it but something else is going to kill me...!!

[Marz]

b12deficiency.info/signs-an...

I replied to your previous post and I am sorry to say that I have read similar stories to yours on the Pernicious Anaemia Society Forum here on HU and also on the Thyroid forum.

Some of your symptoms also sound like Low thyroid ....

thyroiduk.org

You can click onto my username and read my Bio - just a few minutes - and perhaps you will then understand I have travelled a similar road

Sometimes the basics are missed as doctors are in a hurry to pull out the prescription pad to soothe the symptoms rather than search for the root cause ....

[Ameka in reply to Marz]

Hi Marz..... this will be my third attempt to reply to you, 2 times I have written and my computer jump or freeze and all is lost,

I wanted to say that my thyroid has been a problem throughout my life. In 1983 I had a partial Thyroidectomy because of benign lumps. Since then I have been taking Synthroid.

I.m posting this before I lose it!!

[Marz in reply to Ameka]

Did you click onto my uesername Marz - and you can read my Bio - only takes a few minutes. Low B12 accompanies Low thyroid - so please have the basics tested - B12 - Folate - Ferritin - VitD .... speak soon. Do you have any thyroid test results you can share - often Docs say fine when they are NOT. What medication are you taking for the thyroid ??

[Ameka in reply to Marz]

Thanks.... I take Levothroxin 75mg 3x a week but don't think it is enough. I'll ask my Dr. do blood tests for Thyroid and B12 again soon an share the results with you.

[Marz in reply to Ameka]

Do not think 75mcg will be enough for you - it is a small dose. These are the tests you need - TSH - FT4 - FT3 and Thyroid Anti-bodies TPO and Tg. Also test B12 - FOLATE - FERRITIN - VitD - as all need to be OPTIMAL for the Thyroid hormones to work well and for you to feel well.

TSH should be 1 or under and FT4 and FT3 in the UPPER part of the range.

B12 needs to be over 500 - Ferritin and Folate - mid-range and VitD around 60

Have a read of the Thyroid UK link I posted for you above. We have to read and learn to help ourselves - no-one will care more

[Judmilla]

Ameka: Just a note to say I like your attitude. You are doing what you can to make the best of a bad situation, which is pretty much all that any of us can do in this life. I'm glad that you can tolerate the duloxe-whatever (Cymbalta). I couldn't; it caused a horrible depression. I gave it six months, during which I was miserable, but it was doing nothing for my neuropathy so I quit taking it. I'm taking gabapentin, which has mild side effects I don't like, but can live with. My neurologist doubled my dose last December, and suddenly my hair started falling out, so I went back to the original dose, which helps a little. My hair stopped falling out when I returned to the original dose. I tried alpha lipoic acid (ALA) but it did nothing. Then I read that the supermarket stuff is useless, and it should be "stabilized R-ALA". So I've ordered that over the Internet and will try it as soon as it arrives. Otherwise, I do what you do; try to make the best of it. I have a husband and he is pretty understanding, but there isn't much he can do for it. My two cats died of old age in 2013, and it was so hard for me to care for them that I made the decision to not ever have any more pets. Besides, if they're going to live to 18 or so, they might outlive me, and I don't want to worry about what would happen to them after I'm gone. I miss them though. Like you, I pretty much live on the Internet. I will be 75 next month and have had neuropathy for somewhere between 15 and 20 years, but it was painless (numbness) until 6 or 7 years ago. Nobody can agree or decide whether it is idiopathic or is due to diabetes (which I developed many years after the neuropathy started), or due to chemotherapy that I had in 2005. Or all of the above. Or none of the above. If the R-ALA helps, I will try to find this conversation thread again to report on it.

P.S., "Marz" is right, one's B12 level should be above 500. My doctor insisted that it wasn't a deficiency if it was over 200, and Medicare won't pay for the shots unless it is under 200, but in Europe and Asia, a level under 500 is recognized as a deficiency level. Bringing my level up did not help the neuropathy, but it did cure mouth sores and ocular migraines.

[Ameka]

Thank you, Judmilla, for your encouraging words and suggestions. I don't think I'm tolerating the last increase in Cymbalta as well as I should so I have Dr. app't in a few days to talk about it.

I dread the thought of living the next 20 years or so dealing with the restrictive life that comes with Neuropathy. Not a bright future, even with all my bravado of trying to live one day at a time.

[Swallowpoint]

Dear Ameka, In the past month I have answered a number of the descriptions of neurapothy. I am 76 and have probably had this come on suddenly about twenty years ago. But it has not gotten worse to the extent of actual pain---only annoyance. So I am fortunate. It might be my unique diet or the many supplements I take which have helped. I am not on any prescription medications and never have been. The doctor said there are "too many causes of peripheral neurapathy" to even consider!" (I believe I might have nearly frozen my feet in winter back when this started--but not sure.) But to aid circulation--I am nearly "fat-free" in my diet (except for taking some fish oil) and heavy on the usual vitamins plus forty years of heavy dose NIACIN. (nicotinic acid) I now take 500mg pills throughout the day or whenever I take other batches of supplements. You are as young as your arteries--is my motto. So--give that a try also---it might take some while to work and you have to endure the flush for about a week. But it is worthwhile. ----Eric

[Ameka in reply to Swallowpoint]

Thanks for your reply. I see there are a number of people with PN who use supplements a lot as therapy. It is something to consider so will consult my Dr, about this,

[Judmilla]

I have been taking the R-ALA for about a week so far. I THINK it is helping, but it is highly subjective, and probably too soon to be sure anyway. The recommended dose is 600mg a day, and it comes as a 100mg capsule, which means trying to get 6 pills down per day. I am an esophageal cancer survivor and had an esophagectomy with gastric pull-up, so swallowing pills is not that easy a task for me. I will be looking around for a higher dose capsule and a cheaper price. Unfortunately, higher dosages often mean larger pills, and the larger the pill, the harder it is to swallow, so I may have to settle for swallowing six smaller ones a day. Or I may try emptying the capsules out and mixing them in drinks. It was my neurologist who first recommended this, but she knew diddly-squat about the difference between R-ALA and the cheap racemic mixture available at CVS or Walmart. The word "racemic", means a 50-50 mixture of the active form found in nature, and an inactive (possibly toxic) form that occurs when a previously natural substance is synthesized in a laboratory. The R-ALA form is the one that occurs in nature. L-ALA is just a synthetic, inactive by-product. It could be harmless, but it also could be toxic. Why take that chance? (Similarly, trans-fats are a toxic racemic by-product of the synthesis of artificial fats. They pushed that on a couple of generations of innocent people, and it was killing people for years before they figured it out and reversed themselves on the topic. It's still out there, in a lot of processed foods though.)

[Hidden]

Hi Ameka

I read your story. I am 70 and recently was told l have neuropathy. I don't much about it yet. I fell 78 times this past year. So now I use a walker - the cane doesn't help any more.... l am married & have 4 cats & 1 dog. Pets are such a blessing in my life. I live in lllinois. I enjoy feeding hummingbirds and miss them now... saw the last one 10 days ago.

I like your positive attitude...hoping it will rub off onto me ... l have always enjoyed spring & summer & going barefoot... fall & winter not so much. Hope to hear some more from you in the future.