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    Have a referral + some questions...

    So my fantastic new PCP has given me a referral to the UBC MS clinic (the primary MS 'specialty' place for BC). He seems to really feel it's something in the MS universe, which wouldn't surprise me. Even if it's not, I have a higher chance of finding what it is. So yay!

    The questions come from those with nerve pain/trigeminal neuralgia. Can't go any higher on the antiseizures. Still having very persistent pain. I'm trying to keep as cold as I can and I've pinned my hair completely back so it cuts down on the triggering of it, but its still very stressful. As well my left leg is back to merrily cramping away. If any of you have any tips, that'd be great.

    Hope that you are all doing as well as you can.

    #2
    sounds good

    i get peripheral nerve pain mostly so not sure if this helps as trigeminal is a cranial (central) nerve but the principles are likely the same. obviously before doing anything to your regiment check with your doctor because diet is very important and not everyone is the same.

    here is stuff that seems to help me a little bit:

    Eat chocolate with a high cocoa content. Not enough but it does dull it a little for me. If you have chewing pain from the TN you can always melt it in a nice warm cup of milk and drink it. Milk fat contains a protein called casein that are broken down into casomorphins by your small bowel. These are basically pain killers. Chocolate I think has cannabinoids which indirectly might do the same thing. So treat yourself guilt free...I sure do "I need chocolate for my feet!" is an upside, lol

    If you're like me and don't drink milk products for whatever reason, there are other foods that i have found sometimes help but again not that much. soy milk contains phyto-estrogens and as far as i know estrogen can activate the opiates already in your body. another source i have found okay are sesame seeds. pretty much have honey chicken for dinner. or you can drink the sesame seeds, and use honey as the sweetener - well, i can down them anyway.

    another source of painkillers are bread, specifically wheat based, try and avoid preservatives/additives as they stink in general, fresh bakeries are best. gluten is the casein of the grains. breaks down into gliadomorphins and does more less the same job. perhaps for breakfast have some french toast. the eggs have b12 i think, there's milk and the bread as well, and that's pretty much morphine on a plate. tastes nice too.

    also with the chocolate you can never go wrong with cashews, which contain glycine which as far as i know is a component of the natural opiate your body makes.

    oh and a little trick i learned along the way. there are specific pain receptors called vanniloid and they are both activated by capsacian (found in capscium and chillies) and vanilla. Maybe activating these ones also releases the opiates in your body. So with most dinners i use a little sambal oelek (not much) and sometimes in sweet foods, vanilla. Not sure if it will work with others but again all these things seem to dull it a little bit and results are better some days than others.
    ---------
    Wishing everyone luck and as many good days as possible.

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      #3
      Originally posted by FourPaws View Post
      So my fantastic new PCP has given me a referral to the UBC MS clinic (the primary MS 'specialty' place for BC). He seems to really feel it's something in the MS universe, which wouldn't surprise me. Even if it's not, I have a higher chance of finding what it is. So yay!

      The questions come from those with nerve pain/trigeminal neuralgia. Can't go any higher on the antiseizures. Still having very persistent pain. I'm trying to keep as cold as I can and I've pinned my hair completely back so it cuts down on the triggering of it, but its still very stressful. As well my left leg is back to merrily cramping away. If any of you have any tips, that'd be great.

      Hope that you are all doing as well as you can.
      I really feel for you as I have bilateral TN, and that is how I was diagnosed 9 years ago. I also now have glosopharyngeal neuralgia on the left side as well. Sometimes the trick is to switch antiepileptics, or stop one, and start another. I know that sounds weird, but sometimes too many can contribute.

      Occasionally, nothing works and you need a short run of steroids to stop the pain. Ask your doc to consider giving you either a Medrol pack (since you are not diagnosed yet), or 3 days of IV steroids to cut down on the pain. Some docs will give it just for TN, others will only give the oral. Either way, it helps.

      Those are my suggestions.

      Have you had and MRI/MRA? Does your leg spasm occur on the same side as your TN?

      Just thoughts, and does your TN come and go...like do you have periods where it is under control with meds?

      Feel better...get some roids!
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        I think you should avoid milk products and red meats. Try to increase potassium and magnesium as well as calcium. Look up their importance on line. Dark chocolate has magnesium in it. The casein from dairy is problematic. Maybe you should try some of the recommended supplements that are used for chronic fatigue syndrome because chronic fatigue has a connection with pain and neuralgia . Good luck

        Comment


          #5
          Thanks for the great suggestions guys! Chocolate is my favorite indulgence, and I like the dark chocolates the most so it never hurts to hear that I have an excuse to nibble a bit on it.

          Jerry D - I also have fibromylagia so I take a lot of supplements to help the neurotransmitters for that such as magnesium, iodine, calcium, b's, omegas, etc. I try and watch refined flour and sugar because that can make the pain worse. I also have migraine problems so i have to be careful of certain foods for that (chocolate too, hence the nibbling). I avoid additives - nothing that is from a can for years. Still get the 'no-no' stuff here and there, but you try to be as clean as possible. I've found it interesting how similar fibro, CF and MS are.

          22cyclist, thanks for the understanding. Of all the nerve pain TN sucks the hardest. I tend to not get it on chewing as much - it's big on zapping me when I have light touches to the face. I started out on just gaba about six years ago due to left sided body numbness/tingling. Then about a year after that developed the TN on the left face and went on carbamazapine. Had a real time controlling the TN so ended up on the highest dose of it. It has been under control up till recent times with meds (just a zap or two once and a while). It's only recently (in the last month) moved to the right side too.

          I always had a small amount of right sided body nerve stuff but now it's about 60% left, 40% right. The facultations and cramping is on my left side. The MRI I had in 2008 showed many small and one larger non-specific spots. Didn't have contrast, didn't scan the cord.

          I'm in a flare right now, so I know that I just have to get through this and things will improve, but each flare tends to leave a 'present' behind - the nerve pain was one of those.

          Another great thing that I stumbled across from another fibromyalgiac is samento which is made from cat's claw. It helps with my fatigue and a bit with the pain. It's confusing with this sort of thing because I don't know what is fibro and what is from whatever else I have. Several doctors have said that while I definitely have fibro there's many symptoms of non-fibro stuff (such as smelling odd things (this morning was fish. ew), the TN, incontinence (not this flare yay!) etc. But trying to work out which one is causing how much of the fatigue? Tough.

          unsureofanything - for the vanilla, I'm assuming it has to be the real deal, right? I can go buy some, but for now we just have the cheap stuff.

          Comment


            #6
            I neglected to mention that I'm also dealing with left legged heaviness, weakness and drop foot. I'm used to working with a cane so that's good. Having a lot of weakness and numbness in the arm I use to hold my cane so that's a bit of a challenge.

            Also having a lot of problems with understanding written and verbal things, having more trouble than usual talking (using wrong words, can't find words and slurring). Writing and typing is more funky too - can't remember how to spell words and I tend to put letters in the wrong order. People I know are noticing and commenting on it, which can be embarrassing. How do you really explain...well I have this thing that I've been told isn't ms, but now the dr thinks it is and is sending me to a specialist to see if it is, or maybe is some other neurological thing. Bleh. This is the beauty of having a diagnosis. You can just say 'I have xyz.'

            Comment


              #7
              Like I have told others who are about to have their first visit with the MS specialist, write everything down.

              1. Write down when your first episode of pain started.
              2. When the flare's (each one) start (dates), how long they last, and what damage you feel they leave behind.
              3. Write down which symptoms come with each episode (like your weakness with your TN pain.)
              4. Make a note of the times you feel better in between and how long that time lasts.

              All of this will assist in a diagnosis of MS, or another neurological disorder.

              Again, if you have to wait a long time for your visit, I would ask for some steroids to lessen the pain of the TN from your PCP, sometimes they are the only thing that can break the cycle if the TN is due to inflammation.

              Good luck and hope you feel better.
              Disabled RN with MS for 14 years
              SPMS EDSS 7.5 Wheelchair (but a racing one)
              Tysabri

              Comment


                #8
                Originally posted by FourPaws View Post
                ..... As well my left leg is back to merrily cramping away. If any of you have any tips, that'd be great.

                Hope that you are all doing as well as you can.
                hello FourPaws, limbo newbie here. Wonderful news about your referral! Knowledge is power, and armed with answers, you can make informed choices on how to best care for your body. Best of luck!

                I have been dealing with cramps, spasms, muscle contractures day and night for 12+ years. Magnesium has been a huge help to me, and yes I do test low on it. Over time, have found oral supplement doesn't do the trick, but if applied topically, either as magnesium oil, or epsom salt soaks, very helpful. Even if I do a footsoak with about 1/2 to 1 cup of epsom salts, I often get relief.

                You may want to check into the main forum section for treatments, the wellness room, if i remember right. Full of nutritional and treatments we can use for ourslves. Lots of common sense suggestions. Maybe do a cross post?

                Be well, and may hope, laughter and love be constant companions.
                ~ Flow
                Share the chocolate and no one has to thumb wrestle for it.
                Besides, chasing you down isn't an option, my bubble wrap suit isn't built for speed.

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