Told by Neurologist to get off most of my Supplements.....

Discussion in 'Fibromyalgia Main Forum' started by laura81655, Nov 15, 2005.

  1. laura81655

    laura81655 New Member

    Dear Friends, I wonder what you all think of this.

    I saw a Neurologist in Scottsdale AZ. I live in San Diego.
    He is affliated with the Barrow Neurological Institute.
    Neuromuscular Research Center.

    I was able to see him because my sister has her Phd. in Speech Pathology and she works with him in treating patients with problems such as ALS and others.

    My sister also told me that other Neurologists will refer patients to him when they don't know how to treat them.

    Dr. Sivakumar told me that I have small-fiber Neuropathy in my feet. He thinks that my severe stiffness and contractures are not part of fibromyalgia. He has ordered some tests that I hope my HMO will do.

    He told me to get off these Supplements,

    Fish oils
    Organic Flax seed oil
    My Probiotic vitamins

    He said that I am absorbing too many B vitamins, that the fish oils contain vitamin B. He said to much B vit. can mimic Neuropathic pain.

    He said I can take one multi- vit a day, calcium w/mag. and D. Malic acid, and vit. E.
    He said that some supps. can be laced with things that we don't know about. If we have a good diet we will get most of our Nutrients from these.

    I first talked with him in his office about what is happening and how this DD just keeps progressing. Then he did a thorough exam.

    After the tests he ordered, he wants me to try a low dose Prednisone, saying that if I respond to it, it will tell him that there is more going on than fibro.

    I know that I was fortunate in being able to see him. He didn't even charge me for the Consultation. But, I just feel more confused sometimes about how to treat this DD.

    He thinks I may have:
    PMR, Polymayalgia Rheumatica
    Ankylosis Spondylitis

    Blood test - HLA (Human Leukocyte Antigen)test and Rheumatoid Factor
    Muscle biopsy

  2. Juloo

    Juloo Member

    If you're going to go through with the testing, etc., do as he asks. See if you get better. Ask him to give you a timeline for when he thinks you would start seeing results if the too-much-B were the actual cause of the pain.

    If you make it through the time-frame requested and see results, continue. If you see no change and he doesn't have a different diagnosis (other than FM) out of the ones he's considering, then you can feel free to find your own way again.
  3. karatelady52

    karatelady52 New Member

    The problem with trying to go on a "good diet" is our soils are depleted of nutrients and minerals, our vegetables and fruits are loaded with pesticides and our meats have antibiotics and hormones in them.

    So, that's a tall order!

    While you're going to this guy, maybe you could focus on buying more organic veggies(sometimes they look worse than the non-organic ones) and most grocery stores have a brand of meat that has no hormones and antibiotics in them.

    Since I was diagnosed with lyme disease, I've realized that any time I can alleviate wrong foods in my body, it helps with overall recovery.

    Its sooooooo hard to eat healthy (and expensive too).

  4. renae1979

    renae1979 New Member

    It is very sad that the natural and healthier food is so expensive! It is very true that the foods you buy at the grocery store are loaded with terrible stuff (hormones, pesticides, and tons more). Truly organic is the best way to go, but it is also expensive and difficult. Even if something is labeled "organic" it can still have certain percentages of non-organic ingredients, etc. So you have to check the labels really well. Meat and veggies are big ones and getting them at a health food market should help eliminate a good deal of the nasty stuff. But again, it is very expensive.

    But I do agree that improving your diet can make a HUGE difference with this DD in a way that meds and supplements just can't.

    Good luck with the testing!!
  5. ldbgcoleman

    ldbgcoleman New Member

    I also vote to follow the Drs orders and give his way a try. If it doesn't work you can always take another course. I would commit to his treatment for 6 months. Did you have a good feeling about him??? What was your gut reaction?? Lynn
  6. 69mach1

    69mach1 New Member

    about taking the predinsone? look it up and side effects then consider what you want to do...

    also look up the things he things he said you may have.
    find out how they treat those.

    yes a good diet is in order for everyone. an i am guilty of not lately, too depressed to even want to eat something at times, plus i was ill for almost 2 months recently....

    well it's your body and soemtimes we have to make decisions for ourselves. and getting off of those supplements would most diffineley save you some money, so that is a positive.

    well good luck on what you decide to do.

  7. finnigan1229

    finnigan1229 New Member

    My neurologist also told me to get off the fish oil. He said too much of it is like having a Vitamin A overdose.
  8. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Your vitamin C, glutathione and probiotics won't contribute to B vitamin overload, they are all detoxers in different ways.

    I'd be leery of the prednisone. I'm sure you want to give him a chance, but if you don't respond well to that STEROID, then please don't stay on it. It can give you brittle bones and many other problems. You'll need all the detoxing help you can get.

    I wouldn't take it myself, but that's me. If he's right about the different dx, then maybe he can help you alot. But it largely sounds like he's against supplements.
  9. alaska3355

    alaska3355 New Member

    beware of prednisone. It makes you ravenously hungry, so you want to eat all the time! At least that's how it's affected me and others I know....
  10. scrappnmom

    scrappnmom Member

    I don't know about the vitamin B thing causing pain, but I DO know that, Flax Seed Oil and fish oil and Probiotics DO NOT have vitamin B in them! Do Not give those up! The probiotics help with your intestines and digestion and keeping your healthy bacteria in there at a healthy level. This is very important! It does help you detox your body. Flax Seed Oil and Fish oil are good for arthritis inflammation and your cholesterol and heart! You need both of these! And what does Ester C have to do with Vitamin B? I don't know any details about the rest but, I disagree with the above! Be careful and Good luck!
  11. getfitat40

    getfitat40 New Member

    Don't you just hate this DD. One doctor or book tells you to do one thing and then another says - STOP - don't do that. We all react to meds, supplements, and our symptoms are all different.

    My opinion - follow doctor's orders. You said he did a thorough exam so I would listen to him. For me personally - I found stopping all of my supplements helped me a lot. I was over doing it...and I feel so much better. My rheumy adjusted when I take my muscle relaxers and added Elavil to my regime. Once I got adjusted to the Elavil - he has me on a low dose of Prednisone and about 7 weeks after my first appointment - I feel good. Sleeping through the night...ok for at least 5 1/2 hours which unfortunatly is my night.

    My lab work indicated high inflammation from both my SED rate and C-reactive protein and a high white blood count. The prednisone is to see if it will reduce the inflammation. And between the Elavil & Prednisone, I have lost my appetite, so no weight gain.

    Good Luck...Nancy

  12. laura81655

    laura81655 New Member

    It's so true, we are all so different on how we react to supps. meds. etc.

    I do feel lucky to have had the experience and I will follow his protocol for at least six months. I do know that he is a very smart Dr. out of everyone I have seen so far.

    I don't know if I can tolerate the Prednisone. I can't sleep well on a low dose cortisol, but it does reduce my inflammation. I don't respond to NSAIDS. I was told that if your pain is reduced by the steroids, then these are reducing the inflammation in your central nervous system.

    Thanks again for the support,

  13. kalaya

    kalaya New Member

    Do you know at all about Prednisone,or are you fairly in the dark about this med?In the event that you really aren't knowledgable about prednisone let me just tell you that it can cause DRAMATIC WEIGHT GAIN.Perhaps he only wants to do a short trial with it at a low dose,then there wouldn't be much danger of your fat cells betraying you all that much but if he wants to put you on this for a good bit of time then be prepared to need to buy new clothing.
  14. elsa

    elsa New Member

    Do what you feel is right. Read eveything you can on the tests he ordered, what diagnosis he has mentioned and what course of treatment he advocates.

    But most importantly .... DO NOT stay with him or his treatment out of gratitude to your sister and his free consult. In fact, I would insist on paying him right this minute. I would find a way to balance things with your sister.

    Otherwise, you might lose "control" over your own healthcare and your vote may not count as it was gratis and out of the goodness of their hearts that they saw you in the first place. ( ... Just looking at possible thought processes.)

    Being an active partner in my healthcare makes a hugh difference in how I feel ... emotionally as well as physically.

    Hope I didn't offend ....

    Take care,

  15. tansy

    tansy New Member

    and sensory neuropathy, I have both sensory and motor neuropathies, but the former is more severe. Stopped the B6 and my neurological symptoms got worse. Since then I am back on B6, been advised to raise my folic acid (haemotologist) and take methyl B12 along with a B complex. There has been no worsening of my neuropathies.

    I do not take a multi vit/min any more, I do take fish oil and a modest amount of vit A sourced from cod liver oil. There have been no signs of vit A toxicity, in fact I slowly but surely continue to improve.

    Probiotics are not only essential for a healthy environment in the GI tract, but they can reduce inflammation etc too.

    This sounds like someone who's been reading too much of the scare mongering over supps, without actually knowing too much about them at all, nor how studies have shown food no longer provides the oft quoted levels of nutrients.

    The supps he has told you to cease taking are often used by patients with a variety of auto immune disorders, including AS, because they help to ease the severity of their symptoms.

    I sincerely hope he is a good neurologist and can find what is causing those symptoms. My neuropathies are no longer such a mystery, the causes are similar to problems many have here too.

    Steroids were a disaster for me both short and long term. I would only resort to them in the doses used for auto immune disorders again in a life threatening situation and then very short term.

    Good luck with the tests.

    love, Tansy[This Message was Edited on 11/16/2005]
  16. Bailey-smom

    Bailey-smom New Member

    Is what I am doing now working for me? Yes - continue. No - change the plan.

    I would just be sure to ask him for suggestions on how to keep the weight gain down with the new med so I was prepared because that is the berries. But why not give it a shot - I wouldn't be going to him if I wasn't having problems right?

    I wish you luck with what ever you decide & don't forget to thank your sis for the great referral!!

  17. laura81655

    laura81655 New Member

    What he said about the Fish oils is that it causes our bodies to absorb too much of the B's and A's. He seem to know quite a bit concerning supps.

    I saw him at 6:30 in the morning before rounds at the hospital. We didn't get in til late the night before. I was so tired when I saw him, couldn't sleep well that night before, so it's hard to remember everything.

    I know how bad Prednisone can be. It was only going to be given for a short time to see what effect it would have. If it helped the pain, then there is more going on than just fibromyalgia, according to this Dr.

    Yes, my sister is the best friend I could ever have. I love her dearly. She supports and helps me so much !

  18. Rosiebud

    Rosiebud New Member

    my doctor has started giving me B12 injections and I started taking B supplements 5 weeks ago because of the neuropathy in my feet and .... they're helping.

    I'm not saying he's wrong and I think you should definitely see him but some consultants are against supplements.

    I wouldnt touch steroids myself.

    Let us know how you get on with him.

  19. raccoonmom

    raccoonmom New Member

    That's great to get into such a specialist. It will be interesting to see how his suggestions work out. Your sister is sure a great friend to know!

    I've never personally taken prednisone, but I know Jeff has for brief periods, of course I can't now remember why...
    I have heard of many people that had bad experiences with them, but like everything, we all react so differently.

    Good luck and keep me posted.

    glad I decided to check in here today. Now I know where to find you when I haven't heard much from you!

    I was sick for over a week and started to fear my new meds were backing out on me, but I am feeling good today, so must have been a bug.

    When you are up to a long email, something strange happened to me several days that really shook me up. I'll give you all the news.

    Take care and feel better so we can eventually visit!
    Love, Nancy

  20. darude

    darude New Member

    I was told the same thing!!! I am on absolutely NOTHING now and improving. I think initially tho Supplements helped me tremendously.

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