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Best way to find a solution? My story..
Hey everyone!
After lurking around here for the past week, I've come to the conclusion that you need to be very proactive in finding solutions instead of just relying on the doctor's word. I'm 35 yrs old and it all began after wisdom teeth removal 3 months ago. I was under local anesthesia and also given intravenous steroids to reduce inflammation. Post-op I took motrin and a 10 day course of Amoxicillin. About a week later, I noticed the top of my right foot was partially numb, felt like it was asleep. It never went away and the feeling slowly progressed up my calves. I just thought it would go away until I started getting tingles and buzzing in my left foot. I went to my primary and did some bloodwork. Everything came back "normal" and my B12 levels were around 1500. Then went to a neurologist. I did an EMG and was told I probably damaged my perenial nerve and that I have some foot drop, but she didn't explain why my left leg was having the same symptoms. She just prescribed me 60mg dose of prednisone to take for 3 days, then gradually taper off until day 12. After doing lots of research and finding out that this drug was no joke and the dosage was rather high, I skipped out on taking it. Fast forward a month later, the tingles and buzzing sensations seem to be spreading up my legs, my hands, arms, part of my back/shoulder. My legs feel weaker and my knees have a locked sensation. The pain isn't bad, it's mainly the "asleep" feeling and some slight burning occasionally. It's more of an annoying/uncomfortable feeling. I went to another neuro last friday and i'm having another EMG done in a couple days. Yesterday I felt noticeably more fatigued, loss of appetite, and general feeling of being sick. After doing lots of research, I definitely think I have some form of PN. I'm not sure if its SFN, LFN, MMN, CIDP, etc. What tests should I request be done? How can I make sure they are being as thorough as possible? Like everyone on here, I want to find a solution as quickly as possible to hopefully prevent it from getting worse. It's very discouraging that it's taking people months and years to be diagnosed properly. Should I be seeing multiple neurologists at once? I am thinking of finding another one just to get a second opinion. Any advice would be greatly appreciated! |
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Sounds like me. I'll be 35 in June and this neuropathy started out of the blue. Welcome bud. |
Welcome Tunaboy. :Tip-Hat:
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Same to you!! So how long has it been for you since the start of the symptoms to today? I'm at day 36. I've actually started a count up app on my iPhone lol. To be honest I was getting weird zaps in the affected foot for a while now but it was so random and transient I brushed it off. |
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When you had the teeth removed, did they give you Nitrous Oxide first before the other anesthesia?
My son had that done, that way. A big blast of Nitrous can precipitate PN in some people... it deranges the B12 chemisry. This is an old study... Quote:
also: http://www.ajnr.org/content/19/5/894.full.pdf It is also possible that the Amoxicillin disrupted your GI bacteria enough to change something for you. Do you recall any loose stools or diarrhea from it? Replacing some bacteria with a good Kefir (like Lifeway which has 12 different strains)...may help you restore yourself. Disturbances of GI bacteria are a hot topic right now and suggested for many neurological problems today in the research. Yogurt typically does not have many active cultures, so Kefir would be better. I think this is definitely worth a try. |
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Yes, do find out...
Lifeway Kefir is very good...tastes delicious and is not expensive. It has 12 live strains in it. It is in many stores now...even Costco. A supplement form that is also good is this: http://www.amazon.com/gp/product/B00...?ie=UTF8&psc=1 I found it on a review page that listed the top 10 probiotics. |
Did you get a flu shot last fall.........there may be a connection!
Tom K |
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:D.........it could also be caused by an immunoreaction to the seasonal flu shot(Guillain Barre - CIDP).......did you get one last year? The timing coincides with when most people get the shot.
Tom K |
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OK....good.....but your symptoms still sound like GB/CIDP could be a possibility, and I'm not kidding about early diagnosis being very very important. Be sure your Neuro Dr. is looking strongly at the possibility.
I am traveling early tomorrow to take care of my disabled 35 yr old daughter (CIDP), so I do not have the time tonight......but soon I will come back to share her story and the very real link between the flu shot and GB/CIDP. Tom K |
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I have friend with GBS and his doc told him under no circumstances can he get a flu shot because it can trigger the disease again. |
60 days after trauma
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Had my EMG today. I was told my nerves/muscles are normal and healthy. How can that be??? I don't think I need a skin biopsy since I don't really have much pain, just a buzzing, asleep sensation, slight burning, muscle spasms, and muscle weakness. What is the point of the EMG anyway? I was told I don't have CIDP. Obviously not yet but the point of coming to the doc is to stop the progression. The repeated EMG tests will just monitor your progress while your condition just gets worse. It doesnt really solve anything.
I am scheduled for more bloodwork this week and a brain/cervical MRI. I just don't get how my muscles seem fine according to the EMG but I still feel weak. But wouldn't I feel pain if there was something wrong with my spine or neck? Like if I slept on it wrong which caused this to start, I for sure would have felt some pain in the morning. On another weird but good note, I had knee reflexes today. Very strange because 4 days ago the doc hit it tons of times but couldn't get it to budge. Maybe was hitting the wrong spot. |
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My PCP told me it's called idiopathic because the idiot doctors don't know how to handle it!!! |
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Does anyone know if natural anti-fungals like coconut oil will kill the good bacteria as well? |
The ones I had delivered did not have a refrigerate on them.
But they were delivered very cold...and went into my frig. I believe they now pack probiotics under nitrogen, so they go dormant but remain alive. Some very upscale ones now online don't come refrigerated either. http://www.swansonvitamins.com/blog/...-of-probiotics |
two cents
[QUOTE=Tunaboy;1130974]Hey everyone!
After lurking around here for the past week, I've come to the conclusion that you need to be very proactive in finding solutions instead of just relying on the doctor's word. Had my EMG today. I was told my nerves/muscles are normal and healthy. How can that be??? I wanted to support you in a couple of things you said...being proactive is what we need to do...sadly this comes at a cost. But hopefully in the end we find some relief and a little wiser....and as for your positive results....I have CRPS and my nerves respond healthy and look normal...need a good Neuro who knows and listens....:grouphug: |
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http://www.amazon.com/Jarrow-Formula.../dp/B0013OUKTS _________________________________________ |
Well im still waiting for the MRI results. Had a brain and cervical spine done. I will see my neuro tomorrow.
After doing tons of research and trying to figure out this puzzle, i'm wondering if my condition is caused by leaky gut and/or candida overgrowth. Here is my hypothesis. After my wisdom teeth surgery, I was put on a 10 day course of amoxicillin. Simultaneously I was on 800 mg ibuprofen around the clock for 5 of those days. This wreaked havoc on my intestinal health and permeability, allowing toxins, indigested foods, etc to enter my bloodstream. Meanwhile the antibiotics killed all the good bacteria, allowing candida to take over. My immune system then attacks these intruders in my blood stream causing inflammation. The only thing is that I don't have any digestive issues. I do feel/hear some stomach churning but that's it. Regular bowels, no stomach aches, gas, etc. I've been eating as cleanly as possible. Only carbs are sweet potatoes and some fruit. Mostly meat and veggies. No gluten. Only dairy is eggs and kefir. I'm also taking about 50 billion probiotic units daily. Does this sound plausible? |
If you suspect Candida.... taking thiamine or the Benfotiamine is also helpful. This helps metabolize away the excess aldehydes that the Candida dumps into your system.
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MRI of brain and cervical spine came back normal. Next up is skin biopsy. If this shows up normal then is it all in my head?
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no, not necessarily.... chemical effects on the nerves does not show up until the nerves die back. "in your head" implies imaginary to many people. You are not imagining your sensations. If nothing shows up YET then you should be thankful that you may still reverse and heal some.
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Mine came back normal as well. Did you request the skin biopsy or did they already have it set up as part of your tests? |
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Update:
Hey everyone, It's been a while since i've been here. I promised myself I would come back and update everyone and hopefully help or reassure others going through the same thing. It was a real low point in my life but I've been living a normal life and everything is great! To make a long story short, I went to numerous doctors and tried so many treatments and kept searching for a cause. Never found out. Finally got a skin biopsy and it came back positive. I tried IVIG and didn't notice a thing. When my symptoms were first coming on, it started with my feet, then hands, and then it spread everywhere. I'd get random pinpricks, ice cube rubbing sensations, stabbing, and burning in random places including my back and head. My thighs always felt a constant burn, shoulders felt sunburned, and of course my feet. Limbs would fall asleep very fast, especially my hands during sleep. I opted not to start any pain meds because I didn't want to develop a tolerance. I only took prednisone for a few days and my symptoms got noticeably worse. I tried nortriptylene a few times and it didn't do much. Surprisingly, klonopin reduced the pain almost completely. After going to so many docs with no answers, I went to get tested for Lyme. It came back positive for igenex (which I believe is very common) but negative from stonybrook. I honestly don't think it was Lyme but I did take some antibiotics anyway for a few months (azithromycin and minocycline). Eventually I just decided to quit them for health reasons. My symptoms gradually got better and now I don't take anything and I only get slight burning in my feet once in a while. For overall health I do weight training 3 times a week, and take fish oil and vitamin D. I think the hardest part was mental and reading so many doom and gloom stories. But eventually you reach a new baseline and accept it. I honestly forget I even have it now and it hasn't stopped me from living a normal life at all. Been traveling the world and recently got a new job :). Let me know if you have any questions and i'll make an effort to check back or just pm me. Stay positive! |
Hey Tunaboy,
Glad to hear you've seen such an improvement in your symptoms! Out of curiosity, how long did it take from the onset of your symptoms before you started to see improvement and over what period of time did things improve? Which symptoms were the first to calm down as things reversed? |
Hey Tunaboy, I recall your story from back when I first started on this journey. I haven't tried as many medications a you have - I was on heavy doses of Gabapentin for a while, but now on just a small dose to take the edge off. (And a number of supplements as well)
Much like you, things have calmed down, and I still feel it every day (especially the feet) - but it doesn't significantly impact my life at this point. It's just become the new normal. I do like to stop back from time to time and check in. The forum has become pretty quiet since Mrs. D's unfortunate health problems. I was just thinking that this is about the 5 year anniversary of the start of my journey - so decided to stop in and see what was happening. |
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