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Neurothapy or no?
I'll try to make a long story short.
Symtoms starting June 2012: Tingling, strange crawling sensations, burning in feet, sometimes sensitive skin or exxagerated sensitivity, tightness in calves, tightness on the top of my head(it hasn't happened lately), pins and needles in the heels of my feet Starting February 2013: All of the above, now having muschle spasms, electrical zaps/shocks, aching/sore ankles and feet, sometimes sore pains shooting through my muscles(both arms and legs) The pins and needles in my heels is usually just when I wake up in the morning but are gone shortly after. Neurologist says no neurothapy, based on everyting I've read on here I'm not going to go by what she said. I have had an MRI which came back normal, countless blood test which where "normal", but on my next day off I'm going to to get a copy of all these and check all the numbers for myself. Reasons that could have given me neurothopy, that I can think of would be from alcohol abuse, lyme diseas, or "anxiety" as my neurologist said. I hope she's right as she said that my condition is reversible, but now I'm left to figure the rest out for myself. I'm not going to take the chance on her being wrong and my conditions become drasticly worse and then me be wishing that I would have kept investigating. I guess my questions are have any of you or do you know anyone who has had these symptoms from anxiety and fully recovered from it? Or, do I need to continue to go to different doctors and continue to look for an answer for these symptoms? Does anyone have any other ideas as to what these symptoms sound like? I will post my blood tests and numbers when I get them within the next few days. |
Anxiety will alter the amount of carbon dioxide in the blood, and
if you hyperventilate while anxious there can be all sorts of odd sensations. Usually they are around the mouth. But top of the head is a prime spot for doctors to make this diagnosis. Really severe hyperventilation will affect everywhere. Not just some locations. If you know you are anxious there are two supplements you can try. One of them, L-theanine...is also recommended for sensory neuropathies. Doctor's Best makes a good one. You can start there. 2 capsules twice a day and see what happens. This was recommended in Dr. Blaylock MDs newsletter and if you search "theanine" here you will find posts about it. Secondly you can start with magnesium soaks with epsom salts, at night before bed in the bathtub (6oz to a tub of lukewarm water for 20minutes to a 1/2 hr or more). This will relax your muscles and take the tightness away. Some will also be absorbed and help you sleep. If this works, then you can take a supplement like SlowMag twice a day. Another anti-anxiety OTC product is PharmaGaba. This form is more easily absorbed and gets into the brain and works like a mini-Valium, without the addiction or sleepiness. There are a few PharmaGabas out there, but they are very expensive. This one is not and works for me: http://www.amazon.com/GABA-Supplemen...rds=pharmaGaba Subjectively your anxiety should be less with either or both theanine and pharmaGaba. The magnesium is really important to nerves however and muscles, so start with that as soon as you can. Many of us on PN here use magnesium daily, in one form or other. Avoid the oxide form, as it doesn't get absorbed. Here is my magnesium thread... http://neurotalk.psychcentral.com/thread1138.html If you don't have results for B12 and Vit D...then you need to get those measured. That is the first thing for people with nerve symptoms and pain. Think back to when this started. Were you ill? virus? food poisoning, or did you take antibiotics for something? Were you exposed to chemicals, toxins, insecticides, garden chemicals? Do you have well water? If so get it tested for arsenic. Look at your diet. Do you eat MSG in processed and restaurant foods? MSG is very hard on some people, and in many things, soups, flavored chips like Doritos, sausages, sauces. Check food labels to find it. monosodium glutamate. Some people become gluten intolerant and neuropathy symptoms can come just from eating wheat, barley and rye. You may have to alter you diet, to see improvements. Sugar, and white flour also are stimulants to nerve symptoms, especially in people with impaired glucose tolerance (this is not diabetes, yet, but a beginning to it). Those are your first steps. Let us know your test results, please. |
Reply
***My vitamin D level was low when they tested, but B12 was "normal", I will post exact numbers as soon as I can get over to the hospital to pick the records up. When these symptoms first started there were a few things that i can remember. 1. I had an absessed tooth. It took them a few months to find it they where saying "nothing was wrong" so they kept perscribing me amoxi-clav(I think this is how you spell it this has been almost a year ago), my diet was awful it was a binge drink on weekends, drink 5 cokes a day, and go to mcdonalds all the time diet. I HAVE cut out ALL alcohol and most cokes. I rarely get fast food I usually take a can of tuna and crackers with me for lunch now. I eat raw meat such as seafood and steak( I don't know if this would contain anything), and this is about all I can think of. I'm pretty sure no one in my family has had this, unless someone that lives out of state does and I'm not aware of it. This is about all I can think of, I don't think I was ever around any toxins.
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Lab Results
The following tests were taken on 10/18/12
Test Esrman=1 CRPHS= 3.9H MG= 1.9 FOLATE= >19.9 RPR********** VITB12= 444 HIVINDEX= <1.00 HIV QUAL****** PROT,S= 6.7 ALB,SER= 4.2 A1 GLOB,S= .2 A2 GLOB,S= .7 BGLOB,S= 1.0 GGLOB,S .7 MSPIKE=******* GLOB,S= 2.5 A/GRAT= 1.7 PLS NOTE= Comment ARSENIC= 5 LEADBLD= None Detected MERTCBLD= None Detected MMA= 111 If I need to provide any more information I will do so. I have an appointment scheduled for March 20th with a new primary care physician. I have been to a neurologist that said negative, and MRI has been negative, and these are my lab results( excluding a low vitamin D that was done at another doctors office last June, it was checked again later and was "normal") what are my next steps, what direction should I go from here? I'm willing to go to any type of doctor/specialist, and take any test necessary. I do have medical insurance so none of this should be a problem. |
Does your lab report give the ranges for that lab with the results?
This can be important, because of lab procedures and calibration. If you are in US 444 for B12 is just barely normal. The lowest normal now is considered to be 400pg/ml. Your MMA level seems odd. From the net: The reference range of MMA is 0-0.4 µmol/L (0-4.7 µg/dL). from http://emedicine.medscape.com/article/2108967-overview Elevated MMA indicates that B12 is not working in the body, so the MMA builds up. One wants to see a very low number for MMA, therefore. This link gives arsenic ranges: http://www.atsdr.cdc.gov/toxguides/toxguide-2.pdf So your arsenic level needs explanation. Your magnesium is in the low end of normal. http://www.nlm.nih.gov/medlineplus/e...cle/003487.htm This is common in the US where 70% of Americans show some low magnesium levels. So eating more foods that contain it, and avoiding diuretics like alcohol and caffeine, and diuretic drugs, may help that. You can take a supplement like SlowMag twice a day. Or soak in epsom salt baths. Your folate is elevated: http://www.everydayhealth.com/health...d-results.aspx This is common when there are B12 problems. You may not be methylating B12 and folic acid properly. So you can start taking methylcobalamin and methylfolate OTC and see if that helps. Most doctors will not suggest anything with your test result. they are not aware of the new guidelines. Folic acid is in fortified foods now in the US. If you cannot methylate (activate to folate) either, then it will build up in the serum. This failure is a genetic error and pretty common. Left untreated it can lead to cardiovascular damage and disease. There is a DNA test for MTHFR genetic polymorphism if you care to delve more deeply into it. Do the magnesium because it is really helpful for most people. Here is my magnesium thread. http://neurotalk.psychcentral.com/thread1138.html Methylcobalamin: 5mg daily orally on an empty stomach. Do for 3 months, and evaluate results. Your levels should be over 1000. Methylfolate: Metafolin by Solgar, 800mcg a day to start. Both of these are available online, example: iherb.com |
Revised lab results with ranges
Test Range Units
Esrman=1 0-15 mm/hr CRPHS= 3.9H 0-3.0 mg/L MG= 1.9 1.8-2.4 mg/dL FOLATE= >19.9 >3.0->3.0 ng/mL RPR********** VITB12= 444 211-946 pg/mL HIVINDEX= <1.00 <1.00 HIV QUAL****** PROT,S= 6.7 6.0-8.5 g/dL ALB,SER= 4.2 3.2-5.6 g/dL A1 GLOB,S= .2 0.1-0.4 g/dL A2 GLOB,S= .7 0.4-1.2 g/dL BGLOB,S= 1.0 0.6-1.3 g/dL GGLOB,S .7 0.5-1.6 g/dL MSPIKE=******* GLOB,S= 2.5 2.0-4.5 g/dL A/GRAT= 1.7 0.7-2.0 PLS NOTE= Comment ARSENIC= 5 2-23 ug/L LEADBLD= None Detected 0-19 ug/dL MERTCBLD= None Detected 0.0-14.9 ug/L MMA= 111 73-376 nmo1/L mrsD, I went to wal mart today and got some Slowmag, I'm looking into the Pharmagaba( I went to an herbal store in town and it was outrageous so I'm going to do some online shopping). As for my vitamin b level, I would like to bring it up would you recommend b-complex or just regular b-12 for that? As far as all the other tests go I am going to take your advice and get the other products online as well. I plan to take all this information to my doctor and hopefully he will comply with the steps I want to take, if not I guess I'll go doctor shopping again. Is there any other lab work I should request? I'm going to write down the levels suggested on some of the links on this forum and go every 3 months to make sure I'm maintaining levels that I want, and hopefully from cutting the caffeine, alcohol, and stress and maintaining a healthy diet (cutting fast food) I can get back to my normal self again. And this is probably an obvious question but I'm still new to this, if my conditions are from alcohol, poor nutrition, and anxiety, if i fix all these things will my "neuropathy" revere, or is this an irreversible cause? And is there a suggested book or website that will give me a complete 100% guide of a great healthy diet, not for weight loss, just all around good health? |
Alot is unknown about PN. This why you are HERE, and why your doctor is not helping you.
Your lab range for B12 is the outdated old one, where lows are in the 200 range and called "normal". This is unacceptable. We have tons of information gathered here on the Subforum and on the B12 thread and some at the vitamin forum. To start you need to up your B12 to a level at least of 1000. Use Methylcobalamin 5mg orally on an empty stomach, for about 3 months and get retested. Start the magnesium, and with both of those see how things go. Avoid sugar, MSG, and gluten if possible. There are over 100 types of PN, and you have to approach this carefully and with thought. You could have a hereditary CMT. At this point you just don't know. Try to relax, do meditation exercises, and keep your brain off your discomforts. If you focus on them they will burn a pathway to your pain centers and become self perpetuating. This is the new way to approach chronic pain. Do not allow your brain to train itself to focus on discomforts. You can Google and find these techniques, for many types of pain. |
Thanks mrsD, I probably speak for everyone when I say I'm so thankful your on here and willing to help everyone.
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Welcome to NeuroTalk, Beachbum...
You are off to a good start. But check that magnesium and make sure it is NOT OXIDE form. That type is not absorbed and is passed in the stool. I think you would do better on active methylcobalamin oral 5mg a day on an empty stomach. The shots don't work well for everyone and they are not the activated type of B12 either, unless you get them compounded especially for you. Anyone who drinks alcohol or suspects a connection with alcohol should try the improved B1 called benfotiamine. You can get this at iherb.com or Amazon. Most of us use the Doctor's Best brand. Start at 300mg a day and see what happens. After 3 months or so you can drop to 150, if your improvements sustain. People getting B12 shots should have testing done to see if they are really working. Don't do any shot or supplement for 7 days before the test. You should be above 400pg/ml...which is the new cut off point for "normal". Don't accept "normal" comments from a doctor. Get your own numbers. |
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This says magnesium( as Magnesium Oxide and Magnesium Gluconate). 250 mg.
Wow what is better ? Thanks.:confused: |
Good absorption and good price= SlowMag. This comes in a generic too. WalMart has it. One tablet twice a day.
Example: http://www.walmart.com/ip/Slow-Mag-A...-1-CT/10321219 |
It can be pretty scary I know. I take fish oil with omega 3, a daily vitamin, and SlowMag 2 times a day. I think it was like 10 bucks at wal mart. I'm going to get my vitamin B and D checked this week and go from there on that. I think mine was caused mostly from alcohol, because my diet was awful when I drank all the time. Good luck to you and hopefully you'll find some relief.
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More lab results
I have some more lab results from last summer. I also have some lab tests taken a couple weeks ago. Here they are.
** These are from last summer ** Metabolic Panel Result Range Glucose, Serum 83 65-99 BUN .79 .76-1.27 eGFR If NonAfricn Am 125 mL/min/1.73 >59 eGFR If Africn Am 144 mL/min/1.73 >59 BUN/Creatinine Ratio 11 8-19 Sodium, Serum 139 134-144 Potassium, Serum 3.8 3.5-5.2 Chloride, Serum 98 97-108 Carbon Dioxide, Total 23 20-32 Calcium, Serum 9.7 8.7-10.2 Protein, Total, Serum 7.5 6.0-8.5 Albumin, Serum 4.8 3.5-5.5 Globulin, Total 2.7 1.5-4.5 A/G Ratio 1.8 1.1-2.5 Bilirubin, Total 0.3 0.0-1.2 Alkaline Phosphatase, S 66 25-150 AST (SGOT) 15 0-40 ALT (SGPT) 10 0-55 Vitamin D, 25-Hydroxy 25.7L 30-100 TSH 1.57 .45-4.500 Vitamin B12 428 211-946 Folate (Folic Acid), Serum 18.0 >3.0 ** These are from a couple weeks ago ** ANA Direct Negative Creatine Kinase,Total,Serum 199 U/L 24-204 Calcitriol(1,25 di-OH Vit D) 46.8 pg/mL 10.0-75.0 (Note I take a multivitamin and 2,000 IU of vitamin D daily) Lead, Blood (Adult) <1 ug/dL 0-19 LYME DISEASE CONFIRMATION TEST (86617) 3/27/2013 4:44 PM Panel/Test Value Unit Normal Range IgG P93 Ab. Absent IgG P66 Ab. Absent IgG P58 Ab. Absent IgG P45 Ab. Absent IgG P41 Ab. Absent IgG P39 Ab. Absent IgG P30 Ab. Absent IgG P28 Ab. Absent IgG P23 Ab. Absent IgG P18 Ab. Absent Lyme IgG WB Interp. Negative Note: Positive: 5 of the following Borrelia-specific bands: 18,23,28,30,39,41,45,58, 66, and 93. Negative: No bands or banding patterns which do not meet positive criteria. IgM P41 Ab. Absent IgM P39 Ab. Absent IgM P23 Ab. Absent Lyme IgM WB Interp. Negative RA Latex Turbid. 8.0 IU/mL 0.0-13.9 Panel/Test Value Unit Normal Range Hep A Ab, IgM Negative Negative HBsAg Screen Negative Negative Hep B Core Ab, IgM Negative Negative Hep C Virus Ab <0.1 s/co ratio 0.0-0.9 Uric Acid 5.8 mg/dL 3.5-7.2 I had more blood work taken this last week, I'll post it when they post my results. On the tests from the summer I wasn't taking anything. On the current tests I take a multivitamin, fish oil, some b12 type stuff that mrsD recommended, 2,000-4,000 iu of vitamin D a day, and SlowMag. |
Thanks for that list.
You are still marginal on your B12. I'd raise that to 5mg a day on an empty stomach. CPK is close to being out of range however. Don't know at this point what that means. |
Thanks for the reply. I've been taking thr 5mg a day for a couple weeks and plan to do so for a few months and be retested. What is CPK, is it something else I should be concernrd about?
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http://en.wikipedia.org/wiki/Creatine_kinase Basically it reflects some muscle problems, and hypothyroid issues. This link gives a list of what else, can raise this. http://www.nlm.nih.gov/medlineplus/e...cle/003504.htm Do you use statins for cholesterol? They can raise this. Your test should be repeated in the future, in case this is a lab error. |
I read over the links that you posted. One of the causes for the increase was alcohol, but it's been at least 6 months since I've consumed any alcohol. Another reason said it could be from an EMG, which was done back in October, but surely it would be down by down? At the time the tests were taken I had been taking a one a day vitamin, vitamin D, SlowMag, folate 800mcg, methyl-cobalamin, fish oil with omega 3, and possibly alieve because the back of my left knee has been having sharp stinging pains. Within the past few months I have been experiencing muscle spasms and twitches. Within the past couple weeks my left leg has had a strange weird weak feeling that comes and goes, it seems to fatigues easy.
I'm getting to the point to where I'm not sure which direction to go with all the different symptoms I have. I had told my self it was neuropathy due to alcohol, stress, and not eating like I should. But I find myself wondering about MS or some sort of autoimmune disease. I'm just not really sure what my next move should be. They're wanting to do an ultrasound of my legs and feet thursday and I'm supposed to go to a neurologist in Nashville May 20th. He specializes in MS and is board certified in psychiatry. I thought he could help determine between it being anxiety or something else. I'm glad this forum is here, because everyone on here understands how hard it is to be their own full time doctor and still have personal obligations. Between this, being a full time student, and having 2 babies I'm not sure what to do. |
mrsD, I have been racking my brain for what could cause this to be high. I use to take creatine supplements when I worked out. This was a couple years ago though. I guess I need to have my kidneys tested?
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The CPK has to do with muscle damage mostly. And then too, it could be a poor lab error. So just having it redone at another time is what is needed at this point. If you don't use drugs that raise it, or have muscle pain? Just get it retested in 6mos or so. |
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I don't have muscle pain, but I do have spasms and sometimes weakness. Which could also be anxiety. |
The rest of my lab tests
These where taken about a week ago. Any imput will be greatly appreciated. I went and had an ultrasound of both legs down today, they said they'll call and talk to me about that next week. I think that everything on it looked fine though.
EBV Acute Infection Antibodies 3/27/2013 4:44 PM Panel/Test Value Unit Normal Range EBV Ab VCA, IgM <0.2 AI 0.0-0.8 Note: Negative 1.0 EBV Early Antigen Ab, IgG <0.2 AI 0.0-0.8 Note: Negative 1.0 EBV Ab VCA, IgG >8.0 AI 0.0-0.8 Note: Negative 1.0 EBV Nuclear Antigen Ab, IgG >8.0 AI 0.0-0.8 Note: Negative 1.0 TBILI 0.4 mg/dL 0.0-1.0 DBILI 0.20 mg/dL 0.00-0.30 Alk Phos 67 U/L 35-123 ALT 10 U/L 7-40 AST 14 U/L 5-34 Total Protein 7.2 g/dL 6.4-8.3 Albumin 5.0 g/dL 3.5-5.0 UA Panel/Test Value Unit Normal Range Clarity Clear Clear Color Yellow GLU Negative mg/dL Negative BIL Negative mg/dL Negative KET Negative mg/dL Negative SG 1.020 mg/dL <=1.030 BLO Negative mg/dL Negative pH 7.0 5.0-8.5 PRO Negative mg/dL Negative NIT Negative Negative LEU Negative Negative Urobilinogen 0.2 EU/dl NORMAL BMP 4/3/2013 4:27 PM Panel/Test Value Unit Normal Range Sodium 143 mmol/L 136-145 Potassium 4.8 mmol/L 3.5-5.1 Chloride 103 mmol/L 98-107 CO2 25 mmol/L 19-29 BUN 12 mg/dL 7-18 Glucose 86 mg/dL 70-115 Creatinine 0.7 mg/dL 0.7-1.3 Calcium 9.9 mg/dL 8.5-10.5 GFR final 144.89 COMMENT >=60.00 CBC 4/3/2013 4:27 PM Panel/Test Value Unit Normal Range WBC 7.0 K/uL 4.0-10.5 RBC 5.02 M/uL 4.70-6.00 HGB 15.3 g/dL 13.5-18.0 HCT 45.7 % 42.0-52.0 MCV 91.0 fL 78.0-100.0 MCH 30.5 pg 27.0-31.0 MCHC 33.5 g/dL 32.0-36.0 RDW 12.2 % 11.5-14.0 PLT 304.0 fL 150.0-450.0 GRAN% 56.6 % 40.0-70.0 LYMPH% 36.5 % 20.0-45.0 MONO% 6.9 % 0.0-8.0 HEMOGLOBIN GLYCLATED (HGB A1C) (83036) 4/3/2013 4:28 PM Panel/Test Value Unit Normal Range Hemoglobin A1c 5.1 % 4.8-5.6 |
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***I don't know why these jumbled up, I took time and separated them so they'd be easier to read**** |
Did you get tested for Mercury? If you have silver teeth fillings or eat a lot of cheap fish products, you could have mercury levels that can cause forms of neuropathy.
I am getting my mercury and heavy metal urine test tomorrow. I have a lot of old (1980s) silver fillings in my mouth. I am hoping that my tests show high mercury and/or low B12 (from blood test). At least that way I hope to know why I am having the same symptoms of neuropathy like you are having. The nerve zaps, tingling, and muscle twitches & spasms. In 40+ years, I have NEVER been tested by my dozen of docs for VitB12. How ridiculous is that in today's modern medicine? I had to specifically REQUEST the B12 test and I am getting it for the first time. I had to self-educate myself via the internet. It's really sad that doctors do not test for B12 on a regular basis. |
Koi13, I don't think it has been tested, I will bring this up to my doctor when I go Monday. I do have several fillings, I am 26 so most of mine would have came in the late 90's and on. I know how you feel about researching every possibility, it's very time consuming. I find myself putting other things off just to sit around on the computer for hours digging for any information that may be out there. Good luck and I hope you find answers soon.
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Jake, your MCV is creeping up... not out of range yet, but in high normal. This means you may be low in B12...since MCV elevates when B12 is low.
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Yes, I had an MRI done sometime last fall, and they said everything looked normal. I think I'm going to suggest I have one of my spine, because my left leg and lower left part of my back have been feeling strange the past couple weeks. |
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