What's A Good Dose Of Alpha-Lipoic Acid?

[Victoria]

I picked up some Alpha-Lipoic Acid yesterday. Can anyone recommend a healthy dose for SFN? My new internist is taking away my pain medication soon and I'm scared to death.

[potsgirl]

Hey Victoria~

What pain meds were you on and why are they taking you off? I've been on Lyrica, but think I'm going to try Gabapentin because it's much cheaper. I also have purchased ALA, as my neurologist at Mayo recommended it for my SFN along with my Lyrica. He told me to start off at 150-300 mg a day. I'm seeing him in another 6 weeks, so I'm sure we'll talk about my pain meds more then. One of the basic tenets of treating SFN is to control the pain! What gives? I know how painful it can be, and would hate to have you dealing with that along with everything else.

Cheers and best wishes,

Jana

[Victoria]

Hey Victoria~

What pain meds were you on and why are they taking you off?

Hi Jana. I've been taking Hydrocodone since about 2004 for chronic pain of undetermined origin and I've never deviated from the prescribed dose. My doc called yesterday and told me they were discontinuing that Rx come August because they only give narcotic pain meds to people who are dying. I knew that wasn't true. Besides, my pharmacist is a good friend of mine and she verified it. I was dumped to the UIHC because my health complaints are too "complex." I've only seen the internist at the U once, but I can tell already tell where this is going. Psych.

I don't mean to scream, but no one will look at my autonomic test results!!! It's right there in black and white. I'll back up and try to give them some credit by saying maybe they don't understand what the results mean.

[Victoria]

And I meant to add that the hydrocodone doesn't do a thing for my nerve pain, but it does help relieve some of the subsequent muscle pain from weak muscles.

[Sallysblooms]

I am on 600mg-900mg of Lipoic Acid Supreme. My doctor told me what to take and it can go higher.Good if you have a doctor to help with dosage. I am doing great on what I am on right now. I am so sorry you are in pain. It is good to try to help the nerves with the things to help them be healthy.

I caught my problems early and I try to not take prescription meds unless needed. They are hard on my nervous system. HUGS to you.

[janiedelite]

"They only give pain medication to people who are dying" ??????? As a nurse, we were always taught that pain control is a patient right! Can you get into a pain management doctor? They are often anesthesiologists or other docs who specialize in managing chronic pain. They often use meds in a combination that they believe will work best for your condition and narcotics aren't always used.

I ended up going to a neurologist who specialized in managing small fiber neuropathy symptoms.

I use gabapentin 1800mg daily, and recently started paxil which has been helpful for the pain also. I hope your GP at least gives you other alternatives!

[Victoria]

I am on 600mg-900mg of Lipoic Acid Supreme. . . . I caught my problems early and I try to not take prescription meds unless needed.

Bless you for the info on Lipoic Acid. Do you spread your doses out through the day? Oh, and thank you for the hugs. I really needed them today. I do have a good brand of LA, I think. It's made by Frontier Herbs (Norway, IA) and I buy it at our Co-op. I wish I had a doctor to help with this, it would be so much easier. For now I have to wing it by treating myself and pray that Dr. Grubb/Beverly will be able to help me.

I would dearly love to eliminate all of my prescription drugs, and I'll work on that. The one I'm most concerned about is Ambien. I take it every night or I wouldn't be able to sleep at all (pain and adrenaline). I feel super blessed if I can get 6 hours of sleep. Anyway, is Ambien a bad one for our nervous systems?

I didn't have this degree of pain at the beginning of my illness. And I didn't have muscle weakness at all, so I have to speculate that my nerves have continued to deteriorate through the decades. I can't hold a pencil for very long, let alone my Grandchildren without pain, tremors, weakness, severe shaking and total exhaustion for a few days. Darn it! This is a very cruel illness. If I got diagnosed I could accept it and move past the grief of losing my former self. I'm very sorry for droning on like I just did. On the other hand, I know you understand the pain and my need to vent.

I just thought of one last thing. Can you explain why I now have Axonal and Demyelinating neuropathy? Mayo also documented an "old" nerve root injury. Any idea what this means? And how would they know if it's old or new? I understand all of my existing medical records except for the important ones: my autonomic screen and my EMGs.

Thank you so much for the help. I appreciate it more than you'll ever know.

[Sallysblooms]

Victoria, I cannot tell you about your Ambien. I also cannot say why you now have the other types of neuropathy. I wish I could. I only say what works for me. Just in case something can help. We all have to take meds. We just have to learn about them and always be careful. This is all so hard. Maybe others will have information.

Read all about antioxidents. They are good for a lot of reasons.

We are all here for you!

[Victoria]

"They only give pain medication to people who are dying" ??????? As a nurse, we were always taught that pain control is a patient right!

Crazy statement for an internist to make, isn't it? I know it isn't true. I have reason to believe they're trying to go the Munchausen's or somatization route. I do understand I have the right to have my pain reasonably controlled. If I can get him to believe I'm in pain. "Believe" is the operative word here.

I'm afraid to ask for Paxil or any of the antidepressants that may help with pain (for obvious reasons). I'm going to a large teaching hospital (not by choice). Unfortunately, they've treated me poorly in the past. But maybe, just maybe I'll have a fighting chance if I can get to their pain clinic.

I've started taking the Alpha-Lipoic Acid and plan to add some other antioxidants and B vitamins to try to tame this beast a bit.

To back the boat up a bit, my records reflect the fact that I have neuropathy and major pain, but I haven't been successful at getting anyone to look at my records closely enough.

Thanks so much for the encouragement. I really do appreciate it.

[Victoria]

Victoria, I cannot tell you about your Ambien. I also cannot say why you now have the other types of neuropathy.

For now I'll take your beautiful bloom and hug my warm puppy. I have a little Papillion. I can't tell what kind of dog you have on your lap. Is it a Shih Tzu? If so, they're wonderful little creatures with good manners. It also helps to know I've finally found my home — this forum.

Thankful,

Victoria

[Sallysblooms]

Yes, a Shih Tzu! I bet your pup is adorable!

[Victoria]

Awwwww. They're usually calm and soothing little dogs. Male or female? What's his/her name?

I do think mine is adorable. Even with the Christmas tree coming out of the top of his head! This is Carter:

[DoozlyGirl]

Victoria,

Sorry it has taken me days to respond, my 3 week old computer got a virus and it has taken days to get it debugged, and I didn't want to send messages until I had a virus extraction team guarantee my system is clean. I plan to respond to you by email, but wanted to send this along tonight. In case it takes a while to get in to see Dr Grubb, I wanted to send along the names of my neurology team in Wisconin. Just before my computer issues I read one of your posts seeking a knowledgeable MD in one of the states near Iowa. An endocrinologist ordered the autonomic tests for me, then Dr Alexandru Barboi, autonomic neurologist at the Medical College of Wisconin at Froedtert Hospital in Milwaukee gave me my autonomic diagnoses, based on my testing results. He was absolutely fantastic, putting me at ease and was the first to explain autonomic dysfunction to me, putting together what we knew about me very complex history at that time. I see his NP, Mary Yellick on a regular basis. There are also two or three other neurologists who understand autonomic dysfunction there and they have a full service autonomic lab (QSART, TST, TTT) and other muscle-related tests. Not sure how far out they are scheduling out, but if you have any autonomic test results, I bet you could fax them, which may expedite your appointment.

I am now trying to get into Mayo for more extensive testing to determine the triggers/cause of my AN and NOH. I am convinced my triggers are endocrine related, so I am now on the search for an endocrinologist with a basic understanding of autonomic dysfunction. Lwet me know if you have any questions.

Best Wishes, Lyn

[Victoria]

. . . .Dr Alexandru Barboi, autonomic neurologist at the Medical College of Wisconin at Froedtert Hospital in Milwaukee. . . . I see his NP, Mary Yellick on a regular basis.

I've searched but don't see a full autonomic lab at the UIHC where I'm currently going for health care, so this is great information to have. Thank you Lyn.

[arizona girl]

Hi, victoria. Does your health plan allow you to choose the doctors you go to or are you being forced by referral? Do you have copies of all your medical records, including doctor's notes from the doctor who is challenging your pain treatment? Is that doctor the one who is sending you to the teaching hospital? The reason I ask is that we have had a few forum members who's doctors tried to treat them like psych patients and were treated in such harmful ways by these care givers. One ended up having stiff persons syndrome and by the grace of god is being treated at mayo in jacksonville. If you sense your doctors are going down that path, you have to be really careful who they send you to.

Knowing everything in your medical record is really important. Depending on your insurance plan, you usually can go out of state and still be in network. If you can self refer, don't have a doctor your concerned about refer you. Take your copies and make the appointment yourself to the new doctor. It may be time for you to change internists and start fresh. Also hydrocodone can be addictive and he may be thinking you are drug seeking even if you are not. I agree a pain doctor that specializes in neuropathy or a neurologist who specializes in neuromuscular neuropathy are a better fit.

I noticed you said you have some motor or large fiber neuropathy and the small fiber neuropathy, is that right? If you have tests that show both, you may have a polyneuropathy, the most common is CIPD and there are FDA approved treatments for it. Try googling that and see if the symptom of CIPD match yours.

Hope this helps, you have the right morally and legally to direct your own health care. Hope I was able to help.

[Victoria]

Dr Alexandru Barboi, autonomic neurologist at the Medical College of Wisconin at Froedtert Hospital in Milwaukee. . . .

I'm big time confused Lyn, I'm having a brain foggy day. Is Froedtert Hospital part of the Medical College in Wisconsin? Is it at the same place? Like St. Mary's is part of Mayo Clinic in Rochester?

P.S. I hope you have a good doc (well known in the Autonomic community) lined up at Mayo and you have a stellar experience there.

[Sallysblooms]

Your doggie is adorable! Yes, they are wonderful to have and so relaxing to hold.

[Victoria]

Does your health plan allow you to choose the doctors you go to or are you being forced by referral? Do you have copies of all your medical records, including doctor's notes from the doctor who is challenging your pain treatment?

I won't have supplemental insurance again until June. But I should be able to self-refer wherever I want. BUT I was forced to go to the University of Iowa because I was once again deemed "too complex." I have no one in my corner right now. I've exhausted the private practice pool in my area. Rest assured, I will NOT go to psych or allow psych to treat me for a condition I do not have.

I have all of my medical records — boxes and boxes of them, and when I forward them I do not forward physician comments. I only forward test results. I'm contemplating going to Wisconsin right now until I can get to Dr. Grubb's office. But then there's the financial end of it. Between my illness, my son's and my husbands we are financially drained.

When my internist phoned to tell me of his plan to discontinue Hydrocodone I offered my pharmacy's phone number because I WANT him to talk to my pharmacy. I'm sure by now he's spoken with the pharmacists and discovered I've never, ever deviated from my prescribed dosage nor have I requested it earlier than prescribed. I'm quite certain he's looking for an addiction issue, but he won't find it because it doesn't exist.

Yes, I have small and large fiber neuropathy. I have to wonder if the small fiber has gone undetected/untreated for so long that it affected the large motor nerves. Just contemplating, 28 years is a long time.

I'm trying to exercise my moral and legal right to direct my own health care. I am in the midst of getting a patient advocate involved at the U and possibly an attorney (cringe).

I've looked at CIDP and some of it does hit home, but I didn't read anything about having autonomic issues with CIDP. Did I miss something?

Thank you for cheering me on, I really do appreciate it. You helped immensely.

[Victoria]

Awwww, thank you. They're relaxing for sure. Mine knows when my BP/HR are going haywire and when I'm not feeling well. In fact, he sometimes knows before I do when I'm going to have a big crash. I'm sure some will call me crazy!

[arizona girl]

Well your sort of missing it. Large fiber nerves are mostly your motor nerves, allow you to move, etc. Small fiber nerves are the ones that control your autonomic function as well as the more commonly known nerves that cause painful neuropathies. So if you've had tests that show abnormal emg large fiber and you've had tests that show small fiber damage then that is polyneuropathy. So no the small fiber nerves don't damage the large fiber nerves, something else, your trigger cause is causing damage to both kinds of nerves, most likely autoimmunity or genetics. If you are progessively getting worse, moving slow or fast, that is classic CIPD. I don't know what your son is sick from, but there may be a genetic base here, since you are sick as well.

Not sure what tests you've had for the sfn, but skin biopsy is the best one, though the others can show damage too. Skin biopsy will actually show how much nerve loss you have had. If you can find a neuro that does that test, then you've got a neuro who probably treats autoimmune neuropathies like CIPD, MS, etc.

Honestly, if your internist is trying to pigeon hole you like that, he is working against you. I don't know if I would go back to him, can you find someone else? I understand the $$$ issues, which is why, if you can stay in network and local better for you. Do some research and see if anyone near you treats polyneuropathies, one of those treatments is IVIG, if they are using that you are in the right spot. Not every state has these type of doctors though. I'm lucky to have one here, but I went through some pretty rotten stuff to get to him and even though I'm in the right spot, I've still had set backs with treatment.

He and I laughed about SFN being considered a rare condition. He said it is more common then people realize. I laughed and said yes, "it's not rare, just rarely diagnosed.".

[Victoria]

"Well your sort of missing it. Large fiber nerves are mostly your motor nerves, allow you to move, etc. Small fiber nerves are the ones that control your autonomic function as well as the more commonly known nerves that cause painful neuropathies."

Dang, I knew that. They're on separate circuits. I don't know what in the world I was thinking. Small fiber = autonomic nerves. DUH! Gee, can the brain be involved in CIPD? I definitely don't have MS. And yes, I have polyneuropathy. I've had everything from large muscle groups being paralyzed to having mild respiratory paralysis to just not being able to pick my feet up off the floor, to just having mild muscle weakness. Mayo told me I should be on mechanical ventilation in 2004. Two weeks later my respiratory function was fine. The severity waxes and wanes with really bad and terrorizing episodes and some not completely horrible times.

You said autoimmune or genetics. My symptoms have been progressive through the years. Given enough time, I used to be able to snap out of it somewhat, but not anymore. It has been slowly progressive with big ugly painful and scary peaks but definitely progressive.

You asked what tests I've had for SFN. I've not had a skin biopsy. I've only had the QSART test and it was abnormal (a very quick screen, it wasn't a full test).

I already know I've had a huge amount of nerve loss. You know the lancets diabetics use to test their blood sugar? I can stick them up and down both arms and legs, in my lower back and my butt without any pain whatsoever. I can stick them in my flesh as deep as they'll go. I bleed, but I don't feel a thing. Maybe I should take my lancets with me to my next appointment and put on a show for my doctor? My 14-year-old can do the same same in some areas on his arms, and he has the same symptoms. One of my sisters has a severe chronic pain issue (not fibromyalgia or CFS) that no one can figure out.

You said my internist is trying to pigeon hole me and you are correct. He is working against me and I HAVE to go somewhere else. I've exhausted the local physician pool. As soon as they hear I've been ill for this long with no diagnosis. Well, you already know the conclusion they all came to without even investigating. I'll do some more searching. I've phoned a lot of offices and no one does QSART, so I've X'd them off my list of possibilities. Using IVIG as a Google term is brilliant!

"I'm lucky to have one here, but I went through some pretty rotten stuff to get to him and even though I'm in the right spot, I've still had set backs with treatment. He and I laughed about SFN being considered a rare condition. He said it is more common then people realize. I laughed and said yes, 'it's not rare, just rarely diagnosed.'"

I'm sorry you also had to suffer to get where you are. Can I ask how long your diagnosis took? How are you doing with the IVIG? Is it even possible for me to make a comeback after almost 3 decades?

Thank you so much for the concise information, and for sharing with me. You've given me some great ideas and I'm feeling a LOT more confident that I'll finally be able to put this baby to rest.

Blessings,

Victoria

[DoozlyGirl]

Victoria,

To answer your question "Is Froedtert Hospital part of the Medical College in Wisconsin? Is it at the same place? Like St. Mary's is part of Mayo Clinic in Rochester?" Yes. The Medical College of Wisconsin encompasses the medical school faculty and clinical research entities of the Milwaukee County Regional Medical Center, but is better known as the individual entities on the same campus (Froedtert, Children's Hospital of Wisconsin, Blood Bank of Wisconin, a Psych hospital, etc)as well as VA hospital down the road.

You go girl!!

Lyn

[DoozlyGirl]

In my previous research, I only recently focussed on SFN - I had previously researched AN and OH, among other topics. This is opening up my research wide open... Just found a pretty decent description of Small Fiber Neuropathy at SFN with plenty of decent references to reputable researchers/authors. I didn't realize that SFN can cause inability to feel pain. It also states that SFN can progress as LFN, causing progressive neuropathy of both small and large fibers.

Lyn