If the doctors rule out other possibilities, you might want to ask to be checked for vitamin deficiencies.

At least some of your symptoms (vertigo, headache, tingling) might be caused by a vitamin B12 deficiency, common among people with digestive problems and/or people  who take certain other meds that can interfere with absorption.  A simple blood test can show if you're deficient.  Sublingual B12 or sometimes, injections are effective in treating deficiencies.  Other low vitamin levels can cause other symptoms.

Hey there Joan & Mike...thanks for your responses!

Joan - What you mentioned is absolutely what the neuro said as well.  He ordered a B12 test and also a methylmalonic acid test.  I remember that my B 12 has been low normal in the past, so maybe there is something there.  I would be so happy if I could just take B12 shots and feel better!  We'll see once the test results are back.

Mike - Goodness, I feel for you with all those neuro symptoms!  I have had both EMGs and NCT in the past, but on my hands and arms, not on my feet.  Tests always showed that I had carpal tunnel in both hands.  This discomfort is far beyond the CTS pain, however.  It involves pins/needles and discomfort/pain.  I'm not sure if the neuro will go for the tests; I think he's waiting for the blood tests to come back first and then we'll go from there.

Sounds like you've found a combo of meds that at least takes the edge off the neuro symptoms.  I'll keep that in mind if the symptoms persist and it turns out not to be a vitamin deficiency issue.  Thanks for sharing your experience.  Maybe something I need to consider down the road.

Thanks to you both.  I'll keep you posted.

Julie

Julie;
What is the "CTS pain" you mentioned ? I've had tingling, pins& needles, pain in my arms & hands for a while now. It wakes me up most nites and is usually there when i get up in the AM.
I'm going for an MRG on Friday. My GP mentioned carpal tunnel...
So then what- will I have to wear those wrist thingys ? I saw Ketotifen mentioned, but am already on it. I take sublingual B-12
everyday.
OOOH--- Never Mind-DUH Carpel Tunnel Syndrome !!! Sorry- I'm a bit slower than my usual these days  
lori

Lori...no problem on the question about "CTS"!  LOL, brain fog...a daily occurrence for me, so I understand!!

Yes, if you have CTS you are probably looking at wearing the "wristy things"/hand braces, which do help, but are a little bit of a hassle to wear.  I generally wear them at night, because that is when the pain is at its' worse.  It really helps with reducing the pain in the AM.

Joan -  I will definitely update as things progress with my neurologist.  One question; what are the vitamins, micronutrients, etc. that should be checked on a regular basis for MC patients?  I was diagnosed with a malabsorption problem, so I would imagine there must be some areas where I'm deficient.  Doctors don't seem particularly interested in checking these levels, but I'm going to see my PCP and ask her to check my levels, once I figure out what exactly she should check.  Any suggestions on what all I should request on the lab work?

Thanks,

Julie

Pain sources and treatment for that pain is multiple and a mystery unto itself!!

I have connective tissue and long bone pain--from the Masto and also now from newly diagnosed Sjogrens Syndrome which also causes connective tissue pain. It is very common to have other auto immune diseases when you have masto and some of those diseases cause pain too. You cant always be sure which is causing the pain at that moment.

My connective tissue pain and long bone pain is usually in my lower spine, both hips and both knees. It can be VERY painful, where I cant move until I bring that pain level down.  I frequently hear bones that "pop" or make a cracking noise and I think this pain is caused from inflammation because an infrequent dose of prednisone will make it MUCH better. I avoid that though, the side effect of Prednisone isnt worth it. I also have general body pain (I was diagnosed with Fibromyalgia in the past but it was before they found the Masto and Im thinking this pain is caused by the Masto).

I treat those types of pain with pain meds (which I usually tolerate ok, many people dont) AND now I add an extra antihistamines each time I take a pain med--I am convinced that higher histamine levels make my pain level much worse and the pain meds dont work very well until I bring those histamine levels down. Its working-- to my amazement, which makes me think I am under medicated with my antihistamines. I know Dr Castells is now prescribing meds every 6 hours saying that every 12 hours is not covering our need for antihistamines.. It seems she is right--- with my pain level at least and Im changing my med schedule this next week adding a midday dose of antihistamines.

The other type of pain is neuropathy . This pain is usually based on short circuiting and/or damaged nerves and it usually starts in the feet but may proceed to include upper extremities too. I definitely have this type of pain. To make the situation more confusing, the Sjogrens Syndrome also causes neuropathic type pain--add another cause in here--I am Diabetic and  that can cause some pretty intense neuro pain.

So, I cant tell you which disease is causing my neuro pain at any particular moment BUT I can tell you what helps me. First.. as a Diabetic, I take my blood sugar and bring it down with insulin. I am convinced that sugar spikes make my feet hurt. Next I am on Neurontin (newly on it, this last month only). I get some pretty bad neuropathy pain... my feet started with pins and needles, add numbness, then it proceeded to feeling like I was walking on fire and I cant get off of it.  That is HORRIBLE. Sometimes i stick my feet in a pan of ice water 1/2 inch deep and that helps but only momentarily. Since I started the Neurontin (Gabapentin, Lyrica low dose) I do get relief from it and when its particulalry bad, I add an extra dose of 300 mg Neurontin--which helps alot.

With pain levels, you have to be a detective to figure out which type of pain you are having to get a good idea of what to use to treat it. I hope some of my thoughts might help you feel better
Hugs
Ramona

neuro Sx were my first symptom. They have improved with the exception of right thumb numbness. They flare when I'm having a reaction

For me it's tingling and sometimes burning in my tongue, throat, extremities and sometimes whole body

Julie,

  Any vitamin that's absorbed from food or produced in the intestines can be deficient if there's dysfunction of the GI tract. That would include B vitamins and vitamin K.  Some sources say that many vitamins are produced in the intestines, and others say only a few.  I don't know which is true.

  I would imagine the same to be true of minerals.  Osteoporosis is common among mast cell patients.  When there's malabsorption or other GI problem, bone health can be an issue, so vitamin D and K might be tested (in addition to B12).  Vitamin D deficiency seems to be relatively common in mast cell patients.  

  If your doctor doesn't have any recommendations, I'd suggest looking into the symptoms of vitamin deficiencies, and go from there.  So far, I've been tested only for D, K, and B12.  I supplement vitamin C, B vitamins (other than niacin since it can cause mast cell degranulation) and minerals.  I suppose it couldn't hurt to consult a nutritionist.