Flossie
Your Replies
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November 2, 2006 at 3:16 pm
Mudbear,
I am saying this with a smile – but it is going to drive you crazy to have found something that works so well for you and find most folks here very skeptical. I have been there.
Or if a few people do try mangosteen, it won’t work for all of them. I gotta admit my supplement plan including grape seed extract doesn’t seem to have any other cheerleaders.
There are a bunch of different types and stages of CIDP. A few of us are lucky enough to stumble on something at just the right time. It is a real sadness to me that my favorite antioxidant doesn’t fix everybody immediately.
The best we can do is add a footnote to any threads dealing with nutrition in support of our magic helper. You may help a newbie at just the right moment.
Flossie
November 2, 2006 at 12:23 pmRon,
Maybe if you took your web site and contact info off the message it wouldn’t rile folks. Nobody wants to think someone is making money off their pain. If anybody wants to know the exact brand of juice you recommend they will contact you off the forum.
I do know you have been a long time contributing member here and are only trying to tell the others what finally worked for you. Even Quackwatch says that mangosteen isn’t known to hurt anybody. Of course, they also don’t have Western medical documentation that it is a cure all either. People do need to know that it hepled you – just not where to buy it.
You know I am a huge fan of supplements. My personal magic pill is grape seed extract. But I like to think my posts lack any type of commercial endorsement.
I am glad that trying something outside the box worked for you.
FlossieOctober 26, 2006 at 12:42 pmHere are a couple of sites that tell how doctors diagnose peripheral neuropathies.
[url]http://www.aafp.org/afp/980215ap/poncelet.html[/url]
[url]http://millercenter.uchicago.edu/learnaboutpn/typesofpn/index.shtml[/url]Throw in additional illnesses or non standard symptoms and you can see why it takes so long to get a firm diagnosis of CIDP.
Hang in there,
FlossieOctober 26, 2006 at 12:30 pmPam,
It’s a great idea to get some one you trust to help you set up a safe supplement plan. However, do read these 2 articles explaining the snake oil techniques to beware of.
[url]http://www.quackwatch.org/01QuackeryRelatedTopics/pharm.html[/url]
[url]http://www.quackwatch.org/01QuackeryRelatedTopics/compounding.html[/url]My supplement plan only started with the natural pharmacist. He was the one credentialed professional who was willing to take extra time to look beyond the standard teatments for CIDP. I have an excellent neurologist, mental health helper and family doctor; but they are not affordably available nor trained to help me search for alternative pain relief.
Then as I learned more about my disease and how various supplements worked I adjusted my pills according to my own experiences. For instance, my magic antioxidant (grape seed extract) might not be the one that reduces your pain. No supplement is going to cure CIDP , but I do feel that by making my whole body stronger the supplements help me deal with the effects of CIDP.
Each of us has a unique experience with this disease. You need to find help that you can trust. Check out your pharmacist the same way you would check out a new doctor – that’s what licensing agencies are for. Find a personality you will enjoy working with. Then do your own research in addtion – supplements are not always harmless.
Good luck,
FlossieOctober 25, 2006 at 10:45 amPam,
Do you think you have heavy metal poisoning in addition to CIDP? Who referred you to your Environmental Physician?
Here’s a great page on vitamins from the Cleveland Clinic:
[url]http://www.clevelandclinic.org/health/health-info/docs/3300/3393.asp?index=9763&src=newsp[/url]You might also want to take the time to glance at these pages on vitamin toxicity symptoms:
[url]http://www.emedicine.com/EMERG/topic638.htm[/url]
[url]http://1stholistic.com/Nutrition/hol_nutr-toxic-dosages.htm[/url]I am a great fan of supplements. I started my program under the supervision of a licensed natural pharmacist with the approval of my neurologist. Personally I think your pills sound a little unbalanced – there are a lot more antioxidants out there rather than so much vitamin C. Naturally a doctor would know more about what he is prescribing; but I did have friend whose dentist said to take waaaay too much vitamin C because he was not specifically trained to understand supplements.
Five years ago I looked into the possibility of mercury poisoning from my fillings. Unfortunately it looked to me and my dentist that the required dental surgery and alternative fillings would be even worse for my particular health problems.
You are responsible for your own health. Do research and ask questions. Chelation therapies to cleanse your system are not fun so you should not subject your already weakened body to it unless ALL your doctors agree it is necessary.
Naturally there’s a big red flag if your new doctor is selling the supplements out of his own office.
Flossie
October 23, 2006 at 2:47 pmHere’s the web site referred to by my local clinic.
[url]http://www.infraredtherapy.com/[/url]
It includes a page on nitrous oxide and pain, as well as a passle of promises.My neurologist’s problem with it was the cost/benefit ratio. (Or maybe he did not want to insult the hospital’s newest toy. The hospital sent out local mail flyers to advertise the new service.)
But you all know I will investigate any snake oil in my quest for a magic bullet. I think I often give my doctor a nice comic relief in my efforts to short cut the healing process. On the other hand, for me, emu oil (external) and grape seed extract (internal) truly make a huge difference in my pain levels.
Flossie
October 23, 2006 at 11:07 amThis is a real therapy and available at a clinic in my local hospital. Unfortunately my neurologist said it would not help me much and any relief would be very temporary.
We are all affected differently so I think you should ask your neurologist about it.
Flossie
October 19, 2006 at 1:11 pmDennis,
Years ago – in files that are probably lost thanks to the hackers- there was a long thread on possible connections between GBS/CIDP victims. We had polls on where you were born, grew up, exposure to water (lakes, ocean, desert), diseases of close relatives, etc. Naturally we never came up with a true commonality.
I am one of the many who blame my CIDP on campylobacter bacteria from a poorly cooked chicken. Perhaps you had a church supper that affected folks who were genetically predisposed to an autoimmune disease.
(By the way, my favorite conspiracy theory about CIDP is that it is a run away experiment from the military trying to infect the Chinese populace which live in such close proximity to their chickens. This was years before the bird flu.)
You might write your congressman to see if he can get the CDC interested in your church.
Flossie
October 18, 2006 at 2:23 pmcls978,
Something that might help your tummy is to remember to always take the prednisone pills with plenty of liquid and something fatty that will coat your stomach. I ate peanut butter sandwiches for breakfast until I was below 30 mg. every other day.
Of course, peanut butter for breakfast did not help with the weight problem. I think a lot of CIDP victims were once type A scrawny active folks. The forced immobility and medications make weight gain another nasty symptom. So, even though you deserve the comfort of good food, try to avoid the whites – sugar, salt, fat and flour. Eat as much fresh fruit and vegetables as you can. Broccoli and bananas are your new favorite foods.
This might be too late to help you, but perhaps another newbie will find this thread and realize that prednisone side effects can be mitigated.
Flossie the Fluffy
October 17, 2006 at 2:52 pmWow. Beginning high dose prednisone and a cold. You are really feeling miserable. At your stage of illness I was so volatile that I sent my son to Germany and started seeing a mental health helper to protect my life and my marriage.
The good news is that the virus will pass and the prednisone might be your magic bullet to combat the CIDP destruction of your myelin. Keep a symptom diary so you can be impressed by your progress. The side effects of prednisone diminish significantly as the dosage is reduced. Hang in there. Your doctor is correct that each patient needs a different combination of treatments and only experimentation will get you there.
Please consider adding more pills to your day. Between the CIDP and the prednisone you need additional nutritional intake: multi vitamin, calcium, antioxidants, etc. Wash them down with a glass of cranberry juice every day to combat the prednisone’s inclination to give you urinary tract problems.
Above all, try to stay away from crowds where you might pick up another virus. Every time I get a cold I lose a years worth of progress. Argh.
I have been diagnosed with CIDP since 2000. I have only been treated with prednisone (and neurontin for pain). When you are first diagnosed one is naturally and correctly disturbed by the possible side effects of long term steroid treatment. Try to remember that not every one will get every side effect. Prednisone is cheap and works for many CIDP patients.
Here are some reference pages to help you weigh the pros and cons with your neurologist.
[url]http://www.gihealth.com/html/education/drugs/prednisone.html[/url]
My favorite page of prednisone information[url]http://www.classkids.org/library/pred.htm[/url]
A very good explanation of side effects[url]http://www.aafp.org/afp/980800ap/zoorob.html[/url]
How doctors decide if prednisone is safe[url]http://www.medsafe.govt.nz/Profs/Datasheet/a/Apoprednisonetab.htm[/url]
A technical page from NZ[url]http://www.emedicine.com/med/topic3558.htm[/url]
An excellent discussion of immunosuppressants in general[url]http://www.neuro.wustl.edu/neuromuscular/mtime/immunerx.html[/url]
More on immunosuppressants in general[url]http://www.rxlist.com/[/url]
A nice resource for drugs and interactionsI hope this helped,
FlossieOctober 17, 2006 at 1:19 amI have taken varying amounts of prednisone for 6 years. It’s cheap and easy – even though it tastes disgusting.
I saw immediate and wondrous improvements after my first couple of weeks on high doses although I have reached a plateau at 15 mg every other day. Further attempts to reduce my dosage cause an increase in symptoms.
I will continue to take prednisone until I have serious side effects. Then I can explore the other options.
I consider myself very lucky to be able to tolerate the prednisone long term. Especially since it costs me less than $5 a month after insurance and there are no needles involved.
Flossie
October 13, 2006 at 12:45 pmActually bird oil. Ads and testimonials say this stuff will help with just about everything.
I was extremely skepitical when it was recommended to me 5 years ago – especially since its biggest sales pitch is for muscle pain relief. However, emu oil does work as a temporary relief on my extreme foot pain days. All I was looking for was enough of a break from the burning/stabbing/zinging/etc so that I could get to sleep. I was thrilled.
Here is a UK site
[url]http://www.pion-tc.co.uk/[/url]I have also tried some expensive stuff using geranium oil and tea tree oil. It worked but the emu oil has been the most help for the least cost.
I take 3200mg of gabapentin a day and have excellent pain management as long as I do not over do. The best help for the daily night time increase in pain is a leg and foot massage. My unscientific theory is that there is an increased blood flow which helps the nerves settle down. Even using the cheapo wood foot rollers while sitting in front of the TV will help.
I am constantly looking for a magic bullet for my CIDP. I take a slew of supplement pills everyday because they have proven helpful in my personal experience over the past 6 years. (Other people here, including our own Dr. David, think supplements are a waste of money.)
On the old forum there used to be a theory that extra pain meant the nerves were finally healing and reconnecting – so pain was a good sign. (Sometimes you have to work at optimism.)
Your husband has my sympathy. Pain control is so complicated and frustrating. And you have my admiration for trying so hard to help.
Hugs to you both,
FlossieOctober 11, 2006 at 10:24 amSue,
I suspect that your father’s stroke is complicating matters for his physical therapist. I believe that problems with “foot drop” are specific to neuropathies while stroke damage is additional and different.
But do not let them give up. At the very least he needs to be given range of motion therapy so his muscles don’t atrophy. I remember someone saying they wore high top sneakers in the hospital bed to keep the foot muscles flexed.
Here is a definition of Foot drop from a Multiple Sclerosis site:
[url]http://www.lhsc.on.ca/programs/msclinic/define/f.htm[/url]“A condition of weakness in the muscles of the foot and ankle, caused by poor nerve conduction, which interferes with a person’s ability to flex the ankle and walk with a normal heel-toe pattern. The toes touch the ground before the heel, causing the person to trip or lose balance.”
A more detailed article is at:
[url]http://www.answers.com/topic/foot-drop[/url]“Foot drop is caused by weakness that occurs in specific muscles of the ankle and the foot. The affected muscles participate in the downward and upward movement of the ankle and the foot. The specific muscles include the anterior tibialis, extensor hallucis longus, and the extensor digitorum longus. The normal function of these muscles is to allow the toes to swing up from the ground during the beginning of a stride and to control the movement of the foot following the planting of the heel towards the end of the stride. Abnormal muscle function makes it difficult to prevent the toes from clearing the ground during the stride. Some people with foot drop walk with a very exaggerated swinging hip motion to help prevent the toes from catching on the ground. Another symptom of foot drop, which occurs as the foot is planted, is an uncontrolled slapping of the foot on the ground.”
………
“Visual examination of the foot can include routine photographs, magnetic resonance imaging or magnetic resonance neurography (both of which are useful in visualizing areas surrounding damaged nerves). An electromyelogram can be useful in distinguishing between the different types of nerve damage that can be responsible for foot drop.”
………
“Depending on the nature of the cause of foot drop, recovery can be partial or complete. Physical therapy and an ankle foot orthotic device worn in the shoe are important aspects of rehabilitation.”I do not know anything about orthotics but found this generic info at
[url]http://www.cidpusa.org/poly-neuropathy.html[/url]” An ankle-foot orthosis compensates for footdrop by stabilizing the ankle and overcoming the tendency of toes to catch on edges of curbs and carpets [25]. A brace that keeps the wrists and fingers in a neutral position may help patients with weakness of wrist and finger extensors. In general, soft-soled, loose-fitting shoes with thick socks are helpful. Nightly foot soaking (e.g., 15 to 20 minutes in cold tap water without ice) often helps relieve foot pain. In patients with neuropathy involving the feet, learning to inspect their feet daily for undetected injuries is important.”
I hope this was helpful.
FlossieOctober 10, 2006 at 9:15 pmClyde,
I am thrilled that you are responding to prednisone. I kept a diary when I first started taking the nasty tasting pills and it shows the wonderful improvements that happened each week. We are really lucky.
Unfortunately one of the (many) side effects of the medication can be depression. I found it very helpful to talk with a mental health professional. You cannot make the challenges of CIDP go away through force of will – but you can adapt to your new circumstances.
Be optimistic but also realistic. Be careful not to over exercise. Your body will heal at its own rate – it takes a healthy person 3 years to completely renew their myelin. But we are not healthy.
Each victim is affected by CIDP differently – so no one can tell you exactly what to expect. But you have found a place where people understand what you are going through and are willing to share practical suggestions for dealing with the disease.
Flossie
October 10, 2006 at 8:36 pmRegina,
I was lucky in that my foot drop went away within weeks of starting to take prednisone. I never broke anything but I sure do remember the near misses. I am still very careful walking and have completely given up dainty shoes and loose slippers.
To strengthen my ankles I would try to write the alphabet with each foot. At first I could only do a couple of letters.
I sleep with a bolster at the foot of the bed to keep the weight of the blankets off my feet.
Be patient and be careful not to over exercise. You cannot force the nerves in any one part of your body to heal faster through will power.
Flossie
