[Susanne C.]

I know not many of us have CMT here, but this would probably apply to any advanced case of small fiber neuropathy. I have been having a very stressful few weeks as my daughter is having serious pregnancy complications and we are her primary caregivers, her husband has to work and she has a toddler. With all the commotion I have forgotten my base pain meds a few times, I am on MS Contin 30 mg x 3. The pain if I forget the afternoon one is very bad by the evening, and unlike the generalized leg pain I always have, this is most prevalent in my knees and thighs up to the hips.
My skin biopsy at Johns Hopkins in 2011 showed no nerve fibers at ankle, few above knee, and breaking down at hip. If the primary pain has moved from feet and ankles to thighs as the nerves continue to deteriorate, what happens when it gets to the hips as it has- the numbness has progressed this far? Does anyone have experience or knowledge of what happens next? I definitely have some uncomfortable symptoms of tightness in the chest and muscle spasms, with loss of sensation from the waist down. I was given Baclofen for the muscle spasms and chest "hugs" but it isn't really helping. The Valium worked better, but is not a good idea for long term use and I am not going to get well.
I would be grateful for any input. Thanks.

[St George 2013]

My skin biopsy was only taken at the ankle and showed zero A and C fibers in my feet. I have not yet experienced any numbness except for my feet but have noticed the following: deep aching in both legs, same aching in upper right arm, teeth hurting and jaw. And new symptoms on the tops of my feet. I know the teeth and jaw thing are the SFN because this is what I experienced during chemo but not to the degree I have now. The only partial, able to deal with pain relief is 1/2 a vicodin 7.5 every 3 hours and 1/2 a Xanax when really bad which is quite often now. I, like you, have no idea what to expect in the future and it really scares me.

I am so sorry your daughter is having problems. That can be the most stressful thing to deal with. I admire your ability to be able to help your daughter and toddler with your condition. Bless you...your plate is overflowing. I am very thankful that my youngest grandchild (I have 6) was 7 when this started last year. They have been very helpful and I'm able to let them come whenever they want to because they are basically self sufficient I'm not sure I could handle a toddler but probably could if absolutely needed.

You are one of the few people I've met with no fibers in the feet.

Wish I could be more helpful but I'm sure others will follow that can advise. That will help me too....thanks for the thread

Take care and I'll be thinking of you and your family and praying for everything to work out.

Debi from Georgia

[mrsD]

I wish I could offer some help, but this seems pretty serious now to me. Could you have more going on besides the CMT? That is always possible. I'd get a doctor's opinion on it all.

Susanne, you are always a strength for members here, so I do hope you get some help with this new round of pain.

Long term users of opiates you know make more receptors, and that then requires higher doses to fill those. It is the tolerance spiral.

Once things get this complicated, your only recourse is going to be medical and doctors' opinions.

Debi... you are really lucky to have such a wonderful family to step up to the plate for you.

[St George 2013]

From MrsD

Susanne, you are always a strength for members here, so I do hope you get some help with this new round of pain.

Debi... you are really lucky to have such a wonderful family to step up to the plate for you.[/QUOTE]

MrsD and Susanne,

Our Susanne, MrsD is so right about your strength....your posts have helped me so many times and I want to hug you for that

And dear, sweet MrsD....thank you....I have been truly blessed with my family. Our immediate family consists of 13 including me. My mom just moved into her addition to our house and my daughter (formerly 40 minutes away) has moved into my mom's house.....there is only one house between us now. Good things do happen

Debi

[Susanne C.]

Originally Posted by mrsD

I wish I could offer some help, but this seems pretty serious now to me. Could you have more going on besides the CMT? That is always possible. I'd get a doctor's opinion on it all.

Susanne, you are always a strength for members here, so I do hope you get some help with this new round of pain.

Long term users of opiates you know make more receptors, and that then requires higher doses to fill those. It is the tolerance spiral.

Once things get this complicated, your only recourse is going to be medical and doctors' opinions.

Debi... you are really lucky to have such a wonderful family to step up to the plate for you.

The meds are still working, at least for now, and I am saving switching off to something else for when it gets really bad. I was away from home yesterday, had carried all my meds to my appointment to show the doctor, then forgot to refill my purse pill box and was out all evening. Sometimes I really wonder if any of this helps, then a night like last night shows that I am still getting quite a bit of benefit from the medication. Between no medication and being in the car it was very tough.

I am disgusted with doctors in general. The local neurologist had said to come back if something changed but she had a very narrow view of what were acceptable pain levels and symptoms for CMT, ideas that have recently been disproven, and I do not really want to go back. The chest pains are evidently a common symptom once it advances. I am more concerned about the movement of pain, numbness and weakness into the trunk.

The medication is a double edged sword and I am always evaluating, testing my mental acuity, trying to go with less, but for now I am able to function better with them and I need to function. There has been a study on morphine and Gabapentin as an effective combination for PN.
http://www.ncbi.nlm.nih.gov/pubmed/15800228
For now I seem to fall within the population that benefits from this.

My PCP knows little about CMT, but does work with a lot of diabetic neuropathies. He basically trusts my research and feedback, occasionally I get Mr. Hyde instead of the kindly Dr. Jekyll, but I am quite certain I could have a heart attack in his office without his noticing. I know that I am lucky to get pain management as so many people have trouble. I would be very depressed and possibly suicidal without it. At least I can think about other things beside the pain.

This is my only daughter, ( I have four sons), and she has worked so hard all her life, masters degree in education, high school teacher in the inner city of Philadelphia, and has so little to show for it. Her husband is coming up small in this crisis and I think the increased chest pain may have more to do with stress than CMT.

I would never be able to do this without my husband, who works at home, and my 15 year old homeschooled son, who is magical with his nephew and helps with everything.

[mrsD]

I was just wondering if some autoimmune testing might be in order... IVIG might be worth looking into, if the tests have changed any. It would be awful if in the near future you look back and said ...shoulda, woulda, coulda.

[Susanne C.]

Originally Posted by mrsD

I was just wondering if some autoimmune testing might be in order... IVIG might be worth looking into, if the tests have changed any. It would be awful if in the near future you look back and said ...shoulda, woulda, coulda.

I think I will raise that issue at my next visit. A long time has gone by since my last blood work and things might have changed. He is usually good about ordering blood tests- I have wanted a new MRI because of the sciatica issues but the insurance will not accept that unless my diagnosis changes... And we have a "Cadillac" policy.
I was wondering that myself- it seems that if this progresses enough you can develop autoimmune issues. I hate the idea of being hit with the "Fibro" label or adding anything else to my simple and dire CMT, degenerative spine, and arthritis.
The neurologist at Hopkins thought I was on IVIG and said to discontinue it. I took that as evidence that it wouldn't help. (And that he hadn't read my chart). But as you said, things change and maybe it is time to look for something else.
I appreciate your concern.

[Susanne C.]

Originally Posted by St George 2013

My skin biopsy was only taken at the ankle and showed zero A and C fibers in my feet. I have not yet experienced any numbness except for my feet but have noticed the following: deep aching in both legs, same aching in upper right arm, teeth hurting and jaw. And new symptoms on the tops of my feet. I know the teeth and jaw thing are the SFN because this is what I experienced during chemo but not to the degree I have now. The only partial, able to deal with pain relief is 1/2 a vicodin 7.5 every 3 hours and 1/2 a Xanax when really bad which is quite often now. I, like you, have no idea what to expect in the future and it really scares me.

I am so sorry your daughter is having problems. That can be the most stressful thing to deal with. I admire your ability to be able to help your daughter and toddler with your condition. Bless you...your plate is overflowing. I am very thankful that my youngest grandchild (I have 6) was 7 when this started last year. They have been very helpful and I'm able to let them come whenever they want to because they are basically self sufficient I'm not sure I could handle a toddler but probably could if absolutely needed.

You are one of the few people I've met with no fibers in the feet.

Wish I could be more helpful but I'm sure others will follow that can advise. That will help me too....thanks for the thread

Take care and I'll be thinking of you and your family and praying for everything to work out.

Debi from Georgia

Debi, I just went back and re-read your reply. Yes, I also have the aching in my arms, I had to give up sweeping and mopping ( so sad, right? ), the time I can spend on needlework is very limited, and I have been having problems with my jaw off and on. I hate the way this can affect any part of your body with pain and dysfunction. I would like to know more about the way your jaw is affected. Mine gets sore, I start having trouble opening and closing it, it clicks, and I had a ganglion cyst on one side that I thought was related to a cold sore- for some reason the son that has CMT and I both get weird nerve effects with cold sores and he has had recurrent neuralgia from shingles he got on the side of his face when he was 10, it is very rare in children.

[mrsD]

That Herpes simplex is in you all the time. I wonder if it is affecting your other nerves too?

I use Lysine for my Zoster spells of pain. 1-2 grams a day during cold sores, and 1 gram a day when coasting. See if there is any improvement. Avoiding a diet high in arginine also helps, as the arginine stimulates viruses to activate and divide/multiply.

Here is the herpes diet:
http://www.herpes.com/Nutrition.shtml

[Susanne C.]

Originally Posted by mrsD

That Herpes simplex is in you all the time. I wonder if it is affecting your other nerves too?

I use Lysine for my Zoster spells of pain. 1-2 grams a day during cold sores, and 1 gram a day when coasting. See if there is any improvement. Avoiding a diet high in arginine also helps, as the arginine stimulates viruses to activate and divide/multiply.

Here is the herpes diet:
http://www.herpes.com/Nutrition.shtml

That is really fascinating, thank you!
I am inclined to think that something about the CMT makes us more susceptible to other nerve problems, inflammations, etc.