Patty,

Trusting the doctors can be hard these days when there are restrictions on our choices. You are absolutely correct that we are ultimately responsible for supervising our own health care. I have been wonderfully lucky on my whole medical team – including my dentist who first noticed my gums were getting unhealthy.

I really miss my Husky and our walks. He’s been gone three years and I have gained 30 pounds and my blood pressure has gone up 30 points. There are days now that I literally don’t step off the front porch.

I have a lot of fun quilting. I am not especially good at it but it does let me play with color. My thumbs are not very useful so it is nice that the actual work of quilting these days is usually done by the sewing machine. Any activity that makes you forget your symptoms – reading, quilting, organizing the spice shelf -is a godsend.

Flossie

Tara,

I am an infrequent visitor here so I have not read all of your previous posts. However I would like to reassure you that there is at least one other person who has investigated her medical history and symptoms to the point of obsession.

There were others too who used to post here who tried convoluted paths to get a grip on their rare disease. I remember a thread here that went on for weeks about CIDP being caused by childhood exposure to large bodies of water. Ten years ago there were also exaustive threads about the benefits of food additives and vitamins. My personal favorite conspiracy therory is that CIDP was caused by Chinese germ warfare.

I think you should ask your phsyician to tell you why you do NOT have porphyria. Or leaky gut syndrome. Or a yeast infection. Or the ever sneaky low B12 damage. These are all culprits I investigated in the last 10 years.

It took literally years for me to accept that CIDP is just plain bad luck – like being run over by a bus. I was helped by a few visits with a mental health clinic and long term low dosage antidepressants (nortriptalin). I started a new hobby – quilting – and now spend most of my waking time obsessively reasearching patterns and fabrics. Lots more fun than medical sites.

You know your own body best and deserve answers to your questions and fears. However once your doctor has given you a thoughtful, respectful and complete response you need to accept his medical knowledge. Of course if you don’t trust your doctor I think you should find another medical team.

I hope you can find some mental rest. I am an advocate of getting guidance from a mental health professional and using appropriate mood leveling drugs. You have a rare disease with no known cause or cure. That’s not an easy thing and that’s why it’s helpful and important to get emotional support from the forum.

Gentle hugs,
Flossie

Elmo,

I notice a real reduction in foot pain when I wear diabetic socks. They help at night too. I buy the cheap ones from Walmart.

Among my compromises with CIDP I cut my hair short enough to air dry. I found hair dryers to be especially difficult to hold. And it is actually funny now to think of asking my thumbs to help wind hair on rollers.

I’m glad you found a neurologist with a timely appointment available.
Good luck,
Flossie

Also try drinking cranberry juice (or a cranberry fruit blend) every day. Be sure it is 100% juice not the less expensive juice “drink”.

It is not a cure but may help stave off future attacks once you are “well” again.

Flossie

Kristin,

My ALA dosage has changed over the years – my supplement regimen is constantly tweeked here and there. When I was very ill I took 300mg ALA a day; at the moment I am taking just 100mg a day. But if I remove ALA all together I have increased foot pain.

I have a very long post on May 20, 2006, listing all my vitamins and supplements and the reason I take them. If you cannot get that post under “Search” I can send it in a PM.

I have been taking prednisone the past 10 years. I changed last year from Neurontin to Lyrica for pain. ALA is not my primary pain medication by any means.

My neurologist knows I am taking supplements but considers it a waste of money. So did our dear Doctor David. However, even though my CIDP is here to stay, I think my overall health is much improved from when I was first diagnosed. Be sure to check with a medical professional before you take large doses of anything, even herbal or “natural”, because supplements can interfere with medications and health conditions. However, unless they can tell you a specific reason supplements are dangerous to your particular health problems do start providing your body with safe amounts of extra nutrition.

Good luck,
Flossie

Tara,

I am very careful to take antibiotics even if all I am having done is a teeth cleaning. My dentist explained that a cut in the gums could lead to pericarditis – an inflammation around the heart. I take antibiotics from the day before I go to the dentist until 2 days after the appointment. I have been taking prednisone for 10 years and try to be proactive about its side effects.

A personal quirk that I have developed since getting CIDP is that I cannot take pain shots containing epinephrine – at the dentist or the dermatologist. Also during complicated dental work he stops occasionally and gives me the oxygen mask “to improve my color”.

My dentist said he has an MS patient who went out of town to a specialty dentist to get all her silver fillings replaced. She was better for a while and then had MS issues again. MS is viciously unpredictable.

Congratulations on getting dental insurance. It is bad enough to need all that dental work without paying a lot too.

Flossie