SFN moving up?

ger715 · 03-06-2014, 09:12 PM

Quote:

Originally Posted by 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.

Just a little info about Valium. When I had my L4-5 fusion about 7 1/2 years ago, while in the hospital, was given Vallium to take with the Percocet. Was told the Valium helps Percocet give more relief. Had several other spine issues, as well as eventually PN. Have been under the care of a Pain Management doctor. Have been prescribed Oxycontin, Percocet, and still on the Valium.

I have been taking 5mg's Valium 2 to 2/12 a day for years. An addtional benefit I didn't realize would take place was the relief I received from the terrible muscle spasm on the left side of neck. shoulder to the shoulder blade which I had for years. I Had been unable to sleep on my left side for several years. Since taking the Valium, these spasms have greatly decreased and have been able to sleep on left side. Had been unable to lay on my back so had been sleeping on right side for years. I really started having a lot of right hip pain because of this. Vallium, as with most of these meds are addictive. Helping to relieve pain has caused many of us to be dependent on meds. I am greatful for the relief I have gottin from Valium and have no regrets.

Gerry

Susanne C. · 03-07-2014, 11:53 AM

Quote:

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 · 03-07-2014, 12:06 PM

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. · 03-07-2014, 12:17 PM

Quote:

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.

mrsD · 03-07-2014, 12:29 PM

Don't underestimate viruses for damaging nerves. The shingles one Zoster can last a lifetime of pain in some people.

If your immune system gets overloaded or sluggish or busy with another assault, the Herpes family activates, when the white cells go down.

Try the Lysine...see if it helps. It can prevent cold sore breakouts too. It is not expensive and has no side effects.

hopeful · 03-07-2014, 04:24 PM

Quote:

Originally Posted by 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.

Hi Susanne,
I'm so sorry that you are going through so much. I was going to suggest IVIG also but see that Kitt said it doesn't work for CMT. I wish it could work for you. It helps me somewhat for about 7-10 days after. It takes my pain down to about a 5 level which is awesome for me. I'm not sure why it won't work for CMT but I trust Kitt's info.

From what you have written it actually sounds like you may live around me. If you are looking for a neurologist I have one I like. I also have a rheumo that I love. Really listens to me every time I go there.

Let me know if you want the names. I'll pray that your pain and frustration gets better

Kitt · 03-07-2014, 04:54 PM

It does not work for CMT because CMT is an "inherited" syndrome. However, it seems to have worked for two of the siblings in one family who had CMT1X. But, that's one family and they had CMT1X. Susanne has CMT2 but do not know the subtype.

It seems to work for autoimmune conditions but of course there are side effects as with everything for some people. Affecting the liver is just one possible side effect that a person might encounter. The majority of people who have IVIG treatment can tolerate it. Again, it is for autoimmune diseases of which CMT is not. I believe Susanne also has arthritis so it could possibly help that. JMO.

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