Asking Docs for more tests...
 

Well, since the docs aren't finding anything, and my PN is slowly marching up my legs, I've asked them to do a test for Aids and re-test for Diabetes and thyroid.
Over nine months ago they ran diabetes and thyroid tests, both were "normal" but still close to the high area. As I read the boards, and other info, I keep running across info that says it can be attributed to Aids. God Forbid, but my Ex-Husband was not faithful to me, maybe he gave it to me. So, I've requested an appointment to be tested for it along with a re-test on the other two. We will see if anything comes of it. If nothing else, at least peace of mind that I don't have PN as a result of that!

Like all of you, I'm still trying to find a reason, a cause, something that will help me. I just can't give up. I'm so "tired" all the time. I need 10 hours of sleep at night now, I used to be fine with 7. Feet hurt all the time, and I'm at the maximum dosage of Topamax.

Guess it's time to start the drug cocktails. None of the Neuro Docs at Kaiser in Santa Clara or San Jose CA have experience with PN, so it's hard to get them to listen.

I'll keep you up to date, first to see if they will do the tests, and second, what the results are. The only reason I think the Diabetes test is necessary, I had a cut on my hand and it seemed to take a long time to heal, and it seemed to heal very weird, more like a burn than a scrape... not normal looking.

Anyone with Diabetes can tell me if their cuts or scrapes heal differently than they used to heal before diabetes?

Thanks,
Terri

I believe that the AIDs connection....
 

The PN is connected to the DRUGS used for AIDs, mostly. Progressive PN is not common with the AIDs virus itself:

http://millercenter.uchicago.edu/lea...hiv_aids.shtml

poor healing can be due to low zinc status and poor EFA (essential fatty acid status) as well.
I have threads about this on our vitamin forum.

Thyroid is an issue, but it typically does not progress up from the feet or hands. My experience has been confined
to hands and feet only when it was at its worst.

OK Terri?
 

Refresh my own semi-traumatized memory..HOW LONG has this been going on?

Don't bother testing for AIDS...if you can, simply ask if they could 'do' both auto-immune panels and cancer panels....I'll bet lite bulbs mite go off...Tho for both or either on their own I hope all is negative...Isn't that one test always done rite off? And others are right, it's the s/e's from AIDS treatments that cause neuropathies, as in cancer's chemo patients....

Did you have a really bad cold or flu a couple of months before? My case it was 4 months. I ask as that was my case...and it'd turned out that my immune system went into over or 'hyper'-drive BIG time... You have worked w/docs...ASK the silly 'what abouts?' that usually pushe the 'ego' buttons as to NOT omitting SOME MORE of the all of the zillions of options. OFTEN it works...But, my most recent experience about Hashi's is, I guess, an example of 'out of their purview'? in that I'd asked the neuro 'THYROID is not an issue?' Answer was always YES IT IS NOT. And whoa and behold the 'hyper-t' had become auto-immune Hashi's...Good thing the neuro'd upped my IVIG dosage? Huh? Maybe it's good that my Ocon who's also a Hema got some possible dots connected.. Treatments not really changing but peace of mind is a heap better... HANG IN THERE... We all are not stupid, nor did our parents raise us under a bunch of ROCKS! HUGS - j

Terri
 

Yes it's the drug's not the aids.But you may be take you choice Pre-
or border-line Diabetic. So i'm glad you checking. Yes i had a hard
time healing..Did you ever get better transportation,because that was
quite a hike to work and back. Let us know what the tests say. Sue

Healing
 

Before my health issues surfaced. I noticed that I had very slow healing and heavy hair loss. Mine is no doubt related to autoimmune issues. I also (still) have problems with sore places on my scalp, which initially would come up like a pimple in hair follicles. They would clear up somewhat on various antibiotics, but would always come back. They still come up frequently, except now they are filled only with fluid and are VERY sore.

Cathie

Hi Terri, one of the side affects to Topamax can be fatigue, perhaps taking a high dose may be contributing to your tiredness, may be worth talking to your doctor about it.http://www.migraines.org/treatment/protpmax.htm, just look under" Possible side affects".

With slow healing, i was labeled as prediabetic 4 years back, but i had no problem with slow healing at any time.
I am wondering if they give you a 3 -5 glucose tolerance test, my prediabetes was not showing up on a normal Glucose blood test.
good luck
Brian :)

You Guys Rock! Your answers are so right on!
 

"Did you have a really bad cold or flu a couple of months before? My case it was 4 months. I ask as that was my case...and it'd turned out that my immune system went into over or 'hyper'-drive BIG time..."
I believe STRESS brought on my PN, I believe I am Pre-diabetic, and I believe that STRESS is my worst enemy!

I didn't have a cold or flu, but I did have MAJOR stress in my life, and that can affect your immune system... check this out:
June 2000 Daughter Graduated High School
Aug 2001 Turned 40 and Graduated from College
Oct. 2001 Got Married after 11 years of single life
Nov. 2001 Bought a House
Dec 2001 Nursed my dad through his last days of Lung cancer
Feb 2002 Got laid off from my job
Aug 2002 My 15 year old announced she was pregnant
Sep 2002 She comes to live with me permanently (had been with her dad because she wanted to finish school in the same high school) Now she is terribly ill with the baby and needs 24 hour care. Loses 30 pounds through the pregnancy and can't keep food down. Needs suppositories just to keep food in her stomache. 3 trips to Hospital just for IV's to keep from dehydrating. Home schooled to finish Jr. hear of High school. Baby is Due in April of 2003.
March 2003 My mother who is 59 years old commits suicide by shooting herself in the heart. I am the oldest daughter and responsible for all the funeral arrangements. Her husband will not speak to any of the family members other than me because there was a big rift between them and would not release her body to us for a memorial service. He had her cremated and buried. Lots of stress, but he did allow me to say goodbye at the Medical Examiners. BIG mistake... I never should have seen her like that! It was something I should not have done.
April 2003 My granddaughter was born by C section and my daughter was very slow at healing. The baby had jaundice, was breech, and had the cord around her neck three times. She was kept for five days, but now both are fine and spoiled rotten!
July 2003 My new husband and daughter got into an argument, new husband was jealous of my time spent with daughter and granddaughter, and he demanded they leave the house and never come back. Daughter was sixteen, with a 3 month old. She left and went to live with her father.
August 2003 I took a trip back to my mothers house to clean out her things, as my step-father didn't know what to do with the things she had that belonged to her children. I went to pack them and ship them to my home. It was very emotional and difficult. My step-father and I bonded over trying to figure out why she did what she did. I was there for 2 weeks. When I called home, my husband said he was going to Las Vegas with his brother. When I returned home, I found pictures of him with another woman in Las Vegas. I left him.
January 2004 I start working for my brothers business, who's wife just left him and embezzled over $50,000. from him and left with another man.
February 2004 I moved back in with my husband, he promised we would work things out. And I believed him. I finally allowed myself to grieve the loss of my mother, and he became impatient with me. Said I wasn't being a good "wife". By the end of Feb, he had filed for divorce.
April of 2004 I moved out again. Put all my things in storage and got an apartment with my daughter and granddaughter.
July of 2004 My older daughter comes home to live after breaking up with her boyfriend. After a few months, we find out she is using drugs, crystal meth and have to kick her out of the house. She comes in and out of our lives over the next few months, trying to convince me she is clean, when she is not and I drug test her to prove it, she does not pass and I do not let her live with me.
January of 2005 Sister gets a divorce, she and her twin 15 year olds and her 1 sixteen year old boys move in with me for three months! Until she gets an apartment.
June 2005 Feet and legs start to hurt, feet start to become extremely sensitive and legs start to cramp a lot. Sister has MS and she tells me symptoms are exactly same as her MS symptoms. Tingling in feet and pain in legs. Feels like restless legs syndrome. I am currently taking Paxil for my depression due to Mom's suicide, (brother and sister have different mom, they are half siblings) and blame it on my medication. I'm still dealing with grief for mother, and haven't had time to get to medical doctor to deal with pain in legs/feet.
January of 2006 I leave brothers company and go back into temping in the corporate world. Can't wear heels any more, as feet are very sensitive and I attribute it to wearing tennis shoes for the last two years.
March 2006 I start working as a temp. at the company I'm at now. Things are going well, but I start having severe pains in my feet and legs, still no medical insurance, so I can't do anything about it.
August 2006, I finally become a permanent employee, and I can go in and get attention for the pains I'm feeling in my feet. It is diagnosed as PN. Idiopathic PN.
November 2006 I'm walking with a cane and barely able to make it to the bathroom. I'm overwhelmed with this diagnosis and afraid I'm going to lose my job. Trying to adjust to the medications and find a cause for what I have, I'm devastated!
Today I'm not using a cane, I have more good days than bad days... my granddaughter is 4 years old, my drug addicted daughter is 9 months clean and sober and still living at home. My other daughter has finished high school and is taking college courses at night while working during the day. They both live with me and depend on me a lot to help support them while they attend college and work to purchase their cars. The three of us take care of the granddaughter and work together to keep it working.
I usually spend most of my weekends in bed resting so I can work all week.
I believe STRESS brought on my PN, I believe I am Pre-diabetic, and I believe that STRESS is my worst enemy!

Thank you all so much for the information on AIDS, that takes a lot of weight off my mind!

Wow!
 

And I thought my life was stressful!!! I don't know if stress can cause PN or not, but it probably makes it worse, particularly if there is an immune component. At least, it sure is NOT helping things any. I don't know how you made it through all of this and remained sane...

Yes, I remember being under a lot of stress-but nothing in comparison to yours. Teenage daughter driving us crazy. The company I worked for went bankrupt. Difficulty getting a job with equivalent pay. Back to school and experienced a lot of stress because memory didn't work properly. Quit school and worked 7 days a week here and there-things looking up finally. I do remember my feet hurting a lot-doc thought it was plantar fasciatis. No reflexes, then EMG/NC studies really triggered burning. Then PN diagnosed & believed related to a nearly 17 year history of implants...

Well, if stress does cause it, you certainly have had a LOT of it... You have my sympathy...

Cathie

I keep hearing that emg/nconduction studies trigger burning.

Why on earth do they keep giving these tests, IF THEY TRIGGER BURNING??
Like when I went to my podiatrist and he used that vibrating tool on me and that night MY FEET WENT NUTS. Now I know the podiatrists didn't mean for my feet to go nuts. When he used that vibrating tool on me and I jumped out of the chair he laughed and said "good, good, you've got feeling".

I know that "FEELING" is a good thing, I do know this. But when a person had diabetes, and, as was the case with me, the tips of the toes get numb (I didn't know this at the time),and then I'm diagnosed with neuropathy and then I go to the podiatrist and now he knows I have neuropathy because he ordered special diabetic shoes for me, THEN SHOULDN'T HE HAVE KNOWN NOT TO USE A VIBRATING TOOL ON ME??? Or am I stupid here??

Also, if I do go to Alan's neurologist (for my neuropathy), and she gives me a neurological work up and then she goes 'oh, we'll have to give you a emg/nconduction thing, CAN I SAY "no, I don't want that, I don't want to trigger anything"!!!!! I CAN SAY THIS, RIGHT???

Melody

Wow!!!??
 

Yep, you have had more than a realistic share in your life of late!

I guess, you are doing the smartest thing in focusing on the good stuff and not letting so much of the bad eat at you....Somehow, all of us here, no matter what our situations seem to muddle by as best we can... Counting the blessings we HAVE often is far better the counting the problems for sure.

Hang in there and here's a :hug: to help you along the way! - j

It sounds like the past 6 years have been very very difficult for you and I can see how you would think that the stress could cause your PN.

My symptoms began shortly after my husband left me. We bought a restaurant that we managed together and thought this was a good investment for our future. Instead, I worked hard and my husband started to cheat on me with a regular customer and got her pregnant. Then he left me.

This was a very humiliating and traumatic experience for me. I wasn't eating and I was drinking a lot. Shortly after this is when my weakness started in my arms. I would have tremors when I carried anything. This slowly progressed for 2/3 years in my arms and neck until I started limping on my right foot. The weakness then spread to both legs. Currently my IVIG therapy seems to have stopped the progression.

I talked to my neurologist about stress being the cause of my neuropathy and he said that was not possible. It drives me crazy all the time. I would love to know what the cause is. I have read that neuropathy can be caused by toxins, rheumatism, alcoholism and even botulism. I don't know if these are really proven causes.

I really sympathise with your situation. It's very frustrating to deal with a neuropathy. Stay positive and keep strong!

Counting my blessings!
 

I've now got two HEALTHY and BEAUTIFUL daughters!
One Healthy and Handsome son and his wife who is pregnant with another grandchild! :icon_smile:
A beautiful Granddaughter :Girl(angel-flying): who was born three weeks after I lost my mother!
I have a job that I love and a great boss.
I am also going to buy a new car this week! :Wheel: Very first time in my entire life I've EVER bought a brand new car! Woo hoo! I'm so excited!
Oh! Oh! Oh! I also have a new BOYFRIEND!!! :D

Another one of my blessings I count is that I have all of you to come to and share my life with. You all make this "crap" more bearable! No one else really understands the good/ bad/ and the ugly of all this. It's nice to have all of you there to go to and vent to! To brag to when I have a good day, to anyone else, it's a "normal" day, but to me it is an incredible day because I have done something other people take for granted!

I have good days, not so good days, bad days, REALLY bad days, and then I have days that I just can't get out of bed.

Today is a good day.

Here is a pic of my spoiled rotten Granddaughter!
 

Her name is Destiny.... Next one I attach will have her eyes open... but this is too cute!

This is her with her eyes open
 

Attachment 1197Destiny with her eyes open.... (Destiny is four years old now)



Attachment 1200My Son Jason and his wife Monica (Monica is four months pregnant now)

The daughter on the left is the mommy of the baby. She will be 21 years old in October. The one on the right will be 23 in October. She is the one who is clean and sober now! I'm such a lucky mom! Oh, my son, he is 31!

Wow, good looking people!!!!!!

And you have a new boyfriend???

Way cool!!!!

Melody

Destiny's hair...
 

I would give my right arm to have hair like that... She is a cutie...


Cathie

Melody (AKA Elizabeth Taylor)
 

I will start another thread about the EMG's/NC studies...

Cathie :)