Your new neurologist is correct.Do you live on farm or downwind from soybean,corn and canola planted field,than please reply.Also check with other farmers,should be lots of them with similar symptoms
Nope, no farming only mining in my area.
I've got fibro, trigeminal neuralgia, dizzyness, problems walking, chronic daily pain and crushing fatigue along with other things.
I also have several 'Unidentified Bright Objects' on my MRI - but neg spinal tap and neg lyme.
So, I'm in a similar boat. It's really hard dealing with the pain. The things I've done is changing my diet to lots of raw fruit and vegitables and avoiding grains as much as possible (though I do allow myself some). I stretch a lot, drink tons of water (avoid sugars) and I found therapy probably the best thing in helping control my mind frame in dealing with all of this.
Still...it's hard. That's why I find this so helpful - talking with others about it. I also am in a chronic pain group that meets once a month locally. Any courses or groups that you can join may help you out.
Hang in there. It's a tough road.
Thanks I too believe positive support is important. I think my biggest frustration is just not having a name for this.
Hi, have u tried having ur thyroid and blood labs checked???
Low levelsof vitamin and minerals can cause twitching and dizziness....check the vit B12 and D...calcium, magnessium and potassium.
To be dx'd with fibro u need to have 11 of 18 tender points....if not u do not have fibro.
I was diagnosed with Fibro New Years Eve but find it hard to swallow! 18/18 so full house!
My friends and family keep telling me not to read too much into my health and accept the diagnoses given,but I have so many other symptoms that do not fit with the fibro, I know my body and how its detriorating so quickly with some very odd symptoms.The rheumatologist who diagnosed the fibro could only account for a few of the following sumptoms!
I suffer iron store anaemia 9
High copper levels
Kidney Function only 65%
Pitting Edema (legs,feet,ankles,fingers,hands,wrists,face even my scalp)
Cognative Probs paranoia,anxiety,depression,suicidle thoughts,persicution complex,
Twitching/Spasms muscles,stiff neck
Itching/burning sensation in feet if stood still, look mottled purple/orange
Itching all over body
Lesions on legs,back,head some of them feels as though there is glass in them
Night blindness/ blurred vision,gritty dry feeling
Downy hair on face, dark hair on arms and legs
Every few months I lose handfuls of hair, grows back dark coarse curly
Vaginal discharge (clear,no smell swabs taken nothing shown)
Dry skin/but looks shiny and leathery
Chronic pain (worse in the mornings if I have the energy to get out of bed)
Sore mouth and tongue, cracking at sides, very noticeable
Deep stabbing pains throughout my body on and off
Migranes which have lessened
1 yr ago had a fit/lost control of my body jerking shaking even when asleep but concious
I walk on tippy toe of r foot when put foot to floor pain is excrutiating (doc says tendonitis)
Itchy blisters recently appeared on legs below knee
Fevers from time to time
To list but a few, so many others that come and go, my gp is doing all she can to try to get me some help.......its so easy to pass me off with fibro/cfs!
Thanks to all that read this post
I meet the pain point criteria for fibro so I can agree with it, I just feel that it is somewhat of a cop-out dx. If they don't know what it is...must be fibro! I can find no studies that say fibro will cause brain lesions.
I feel the docs are missing the big picture...what is causing the brain lesions that have increased gradually over the last several years. Am I to sit back and wait while I have a "pac-man" destroying my brain?
I have had lab work the only thing that is low is my calcium level. I had one doc mention CADASIL to me but my insurance would not pay for the genetic study.
Hi...well it is possible that u have fibro and a couple other health issues. I also have fibro but knew it was not my only dx...and I was right!!
A low calcium level can cause many issues.
As for the brain lesions they can be caused from an injury or migraine headaches.
feather- u deff need more testing, but u may need to accept the fibro, but push to see what else is going on.
Physical conditions associated with copper imbalance include arthritis, fatigue, adrenal burnout, insomnia, scoliosis, osteoporosis, heart disease, cancer, migraine headaches, seizures, fungal and bacterial infections including yeast infection, gum disease, tooth decay, skin and hair problems and female organ conditions including uterine fibroids, endometriosis and others.
Mental and emotional disorders related to copper imbalance include spaciness, depression, mood swings, fears, anxiety, phobias, panic attacks, violence, autism, schizophrenia, and attention deficit disorder. Copper deficiency is associated with aneurysms, gout, anemia and osteoporosis.
Interestingly, the symptoms of premenstrual tension are identical to the symptoms of copper imbalance
U did mention high copper levels- this should be looked at more closley.
Hiya Feather's back, yep I agree with you whole heartedly it does seem kind of a cop out along with CFS/ME, as with you, yep I can accept that I am suffering Fibro but the rheumatologist did say she can't account for many more of the symptoms I am experiencing....I just can't leave it there like my family would have it (family being a brother and a sister who both have families)!
I have a blood test booked for thurs to test what my copper level currently stands at, hormones, anaemia and probably imflammatory markers, from time to time these are raised????
There has to be an answer to the imbalances in my bloods, fibro doesnt cause them!
The same for you dmama5,it doesn't explain the lesions.......
I end up scaring myself half to death with some of the diseases/conditions I read about on the web.....I find you can always make the worst illness/disease/syndrome fit your exact sypmtoms, lots of info which can be real helpful but even more garbage, I spend hours on here (www) being on my own, you really have to stick to the more reputible sites and seek help and support from forums such as this!
I live in the UK where we have free medical treatment, but it does like to skimp on too many tests, but overall I can't complain really......
I don't know what would be done for me if my copper levels stilll remain high, I have read it can be sorted nutritionally but the info I have is the my body doesnt seem to be using it, something about it binding with zinc, oh my goodness I'm going to send myself mad with it all.
Thanks to you too "selma" for your concern, copper toxicity, it really can create some severe problems!
As with you both we know our bodies and for today yes I can accept Fibro but there's a whole lot more going on!
Thanks for the support guys x x
It sounds like you have the same problems and symptoms as my 22 year old daughter. She was diagnosed after a lifetime, literally, of unexplained pain. Her diagnosis was Sarcoidosis. It causes lesions, or polyps, all throughout the body, and is rather rare, so most doctors don't ever test for it. Just a thought.
Sounds like you should ask to be checked for lyme disease as this causes white lesions on the brain.Be ready for a fight as most neurologist and primaries do not recognize chronic late stage lymes.BUt I have it and finaaly with Igenex lab testing got a 9 band CDC positive lyme titer.Most lab test are not sensitive enough to pick up Lyme but keep fighting if you need to as I am in exactly the same spot but also had all started with crowning of my top teeth as this was the insult that activated late stage Lyme I had been living with that they called"Fibromyalgia" or MS but I dont have MS.But many infections and toxins can cause these white lesions and Fibromyalgia.Lyme does not always show up in spinal taps but can rule out MS
Having suffered migraines since childhood myself and then suddenly developing vertigo (with stiff neck) and neuro issues, I can advise you on how to get rid of those issues for good - and possibly even explain the 'fit you experienced too. If you suffer from migraines, it means you have both an 'excitable' brain (sensitive to stimuli) and low levels of magnesium. Magnesium levels are depleted by neuronal activity and low magnesium can cause migraines, seizures, low energy and mood and thyroid dysfunctions. Magnesium is needed to synthesize GABA and its low levels of Gaba that causes the seizures. Magnesium is also needed to synthesize Seratonin, low levels of which cause depression/suicidal ideation. So, to treat all those conditions, using Magnesium threonate and magnesium glycinate (better versions to help brain function- but remember to take them on a full stomach at the START of the day/dinnertime, as they raise energy levels and you don't want to end up wide awake at night!).
Magnesium counteracts/balances the effects of calcium. If you are taking calcium supplements then consider stopping/reducing, as calcium is likely to be responsible for causing your vertigo (and high salt intake will exacerbate the effect). I was prescribed calcium post-hysterectomy and started getting vertigo/stiff muscles and heart irregularities. They all stopped when I quit taking calcium and switched to Vitamin D. Calcium increases smooth muscle contraction (causing the stiff muscles) and inner ear/balance issuesand if you are also low on Vit D,(which is needed to affix calcium to the bone) the calcium will accumulate in your muscles (including the heart) which could lead to heart-attacks and even cancer. If you really must take calcium supplements, at least make sure the calcium is from plant sources rather than rock/mollusc sources.
I say 'if you must' supplement with calcium because some of your symptoms could possibly be explained by FUNCTIONAL HYPOPARATHYROIDISM, http://rarediseases.org/rare-diseases/hypoparathyroidism/ which is caused by low magnesium levels but also creates low calcium levels. . .and this can lead to 'fits' too - So, you absolutely have issues with your calcium/magnesium one way or another but it is VERY important that you get tested for this condition before reduce any calcium intake, just to clarify!. Start taking vitamin D too, in fact, if you just have an egg every day it will provide approx 50% of your vitamin D and provide lots of selenium too, which will help your skin conditions.
The stabbing nerve pains you are getting sound like demyelinated nerves - also caused by low magnesium and vitamin D! Lions mane mushroom can speed up remyelination if you want an extra boost, but the Vit D and magnesium should be sufficient to help remyelinate them within a few months. Kidney function issues can be related to the high copper and/or hypoparathyroidism, but can also be GREATLY helped with nettle tea, its like a wonder drug for the kidneys!!
These articles should help with your copper level issues: http://www.melissadianesmith.com/Articles/CopperOverLoad.html AND http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm
So - in summation, get yourself tested for HYPOPARATHYROIDISM (and ADDISONS DISEASE whilst you're at it),supplement with magnesium threonate/glycinate and vitamin D/eggs, address your copper levels by taking a PLANT-SOURCED multivitamin (mykind or garden of life are the best I know of), and increase your vit C and zinc rich foods (zinc supplements are really hard on the stomach and there are so many zinc rich foods its easier to eat them than supplement). I cured my hypothyroidism, vertigo and drastically reduced my migraines using these few tweaks.
When you do get a migraine btw - best way to get rid is take some extra magnesium, put one of those gel cooling patches on forehead (reduces skin swelling on brain that is the cause of the pain - but don't use ice as it is too cold and the 'sensitivity to the additional stimuli' of that will keep your brain 'excited') turn the lights off in your bathroom and get into a shower, place the stream of water/shower head, DIRECTLY ON (not just 'above') the 'fontanelle' area. . .for some reason it hugely reduces the pain, and keep your mind as 'blank' as you can to calm the neuronal hyperactivity that triggered what is called the 'depressive wave' (a migraine is literally like a computer shooting down and rebooting due to overload!). Good luck, you have all my sympathy because I've been through very similar to you and it almost broke me, but if you do these things, ooh, and almost forgot - make sure you drink enough BOTTLED water (avoids copper piping) may seem a little thing, but helps kidney and thyroid function massively and will reduce your copper intake too - and you will be a different person in a matter of a couple of months! :-)