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At this point

Posted: Fri Sep 19, 2014 11:09 am
by fyother
Hello. I'm a 46 year old female. I have a neurologist that has scheduled my testing for Thursday. I am having some symptoms of RLS (which he says is not RLS), spasms in my thighs, tingling in all four limbs now which has now started in my neck and face also, pretty bad angina, Alot of cognitive issues; memory, speech, slow thought process. Also shakey voice at times. Really weak alot, my legs are heavy but my arms are heavier. I have had like 3 or 4 very short blackouts. My calves feel tight and swollen. This has gone on for about 3 years now off and on. This summer has been worse. My D vitamin is a little low. That is all i know at tbis point Thank you for reading. Any ideas?

Re: At this point

Posted: Fri Sep 19, 2014 11:41 am
by ElliotB
Is the neurologist one who specializes in MS?

Re: At this point

Posted: Fri Sep 19, 2014 11:42 am
by jimmylegs
heya - i have plenty of nutritional ideas, pm me for links to useful info :)

Re: At this point

Posted: Fri Sep 19, 2014 12:43 pm
by lyndacarol
fyother wrote:Hello. I'm a 46 year old female. I have a neurologist that has scheduled my testing for Thursday. I am having some symptoms of RLS (which he says is not RLS), spasms in my thighs, tingling in all four limbs now which has now started in my neck and face also, pretty bad angina, Alot of cognitive issues; memory, speech, slow thought process. Also shakey voice at times. Really weak alot, my legs are heavy but my arms are heavier. I have had like 3 or 4 very short blackouts. My calves feel tight and swollen. This has gone on for about 3 years now off and on. This summer has been worse. My D vitamin is a little low. That is all i know at tbis point Thank you for reading. Any ideas?
Welcome to ThisIsMS, fyother. Since you asked for, "Any ideas," here are mine:

The "tingling in all four limbs" is peripheral neuropathy.This is a common symptom in many conditions. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\
Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Are you gluten sensitive at all?)
Lyme disease
HIV/AIDS
Hepatitis C and B
Please note that the first blood test the U of Chicago suggests is for vitamin B12. I, too, think this is the place to start with #1 a serum B12 test, #2 a serum folate test, #3 a serum homocysteine test, and #4 a serum (or urinary) methylmalonic acid test. Any person, at any age, can develop a B12 deficiency. Neurological symptoms (all yours I highlighted are consistent with a B12 deficiency) can precede abnormal blood test results. There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

We wish you all the best.

Re: At this point

Posted: Fri Sep 19, 2014 1:16 pm
by fyother
Hi. Thank you. I am not gluten sensitive. That's what I was reading. This time around the peripheral is in all 4 limbs and twitching is worse. I am shakey/tremors now also, not sure if that goes with the peripheral.

Re: At this point

Posted: Fri Sep 19, 2014 3:08 pm
by lyndacarol
fyother wrote:Hi. Thank you. I am not gluten sensitive. That's what I was reading. This time around the peripheral is in all 4 limbs and twitching is worse. I am shakey/tremors now also, not sure if that goes with the peripheral.
Peripheral neuropathy is numbness/tingling/even pain in the extremities (arms/hands/fingers or legs/feet/toes). "Twitching" or shaking/tremors is not part of peripheral neuropathy, as I understand it. But a B12 deficiency could include all of these symptoms – symptoms vary widely and no one with a deficiency will have all the possible symptoms.

In gluten-sensitive people, gluten may damage the intestines, where B12 is absorbed (and lead to a B12 deficiency). But the pathway of B12 absorption is very complicated – there can be many places where the B12 pathway can be blocked. For instance, a person's diet can be lacking the animal-source foods which supply B12; antacids and medications such as Nexium and Prilosec can reduce the amount of stomach acid necessary to unlock B12 from the food source; gastric bypass or stomach reduction for weight loss means the Intrinsic Factor produced in the stomach and necessary for B12 absorption is no longer available; sometimes the pancreatic enzymes are insufficient; some people have had the part of the small intestine where B12 is absorbed into the bloodstream removed surgically – and there are many more reasons that a sufficient amount of B12 does not reach the cells in the tissues. Every cell in our body requires B12.

There could be many reasons for your symptoms. I only suggest that a possible vitamin B12 deficiency should be investigated and ruled out early on.

Re: At this point

Posted: Fri Sep 26, 2014 12:56 pm
by fyother
I had my mri yesterday. He said "I think you have fibromyalgia". It could be but the symptoms are not all the same. I'm not sure if fibromyalgia comes and goes like what I'm experiencing. This round of symptoms are worse and exhausting.

Re: At this point

Posted: Tue Oct 14, 2014 10:34 pm
by jgoold87
I dont know very much about MS. but fibromyalgia, i know alot. I have had it for 11 years.

Did your Dr do a 18 point nerve pressure test?
http://www.webmd.com/fibromyalgia/guide ... ger-points
search alot about FMS before you let a Dr give you that as a diagnosis. I have it. and everytime I tell a Dr about it. They look at me as tho I am a hypochondriac.

In my opinion, the only real symptom of FMS is pain. but the pain brings on all the rest of the symptoms that are normal for the disease. if my leg hurts it will move and twitch and I will want to get it in a comfortable position. but if I put heat on the leg then the symptoms relax. If I have been reading correct information about MS, heat is not a good thing to do. When my muscles would tighten up. (another symptom) if i put heat on it the tightness would relax. sometimes it wouldnt but if i slowly and cautiously stretched that part, the pain or the symptom would ease. I am on this forum to find out more about MS because... when i use heat now (for the last 2 years) i feel horrible. i have had weird symptoms in the weirdest locations. the bones under all the skin and muscle would feel wrong. but to touch the leg there wouldnt be any pain. I have had my heart looked at because i had a weird sensation in that area.

The reason I am writing this long is because I have found alot of Drs that dont like FMS, dont believe in the disease and they all complain about Drs throwing people into the FMS pile because they dont know whats wrong and dont know where to look.

I dont want you to be put into a FMS diagnosis, if you dont really have it.

Re: At this point

Posted: Fri Oct 17, 2014 5:55 am
by fyother
Hello. The Dr didn't do any tests. He simply said this is what I think you have. But now my symptoms have increased. I have vibration in all directions, almost like a cold chill (that isnt cold)with a clinch at the end. And really uncoordinated and some vertigo. My friend has fibromyalgia and she says it isn't that, she doesn't think anyway. I have alot of numbing. It is sometimes hard to stand and walk because of the vibrations. I feel like I'mgoing to explode. Thanks for talking to me.

Re: At this point

Posted: Fri Oct 17, 2014 7:15 am
by jimmylegs
you can order tests through a private lab if you have the spare change. docs don't tend to have the nutritional info available on and pertinent to chronic illness. and they don't tend to refer to nutritional specialists either. if tests aren't feasible you can always review your diet and compare to recommended daily intakes of essential nutrients. you're bound to turn up useful action items if you decide take steps along these lines.

Re: At this point

Posted: Fri Oct 17, 2014 11:41 am
by fyother
I will surely try this. I have come to the E.R., I am having pretty bad throat spasms and talking funny. It was scary. It has gotten some better now. Thank you for the info. Have a great weekend.

Re: At this point

Posted: Fri Oct 17, 2014 11:58 am
by lyndacarol
jimmylegs wrote:you can order tests through a private lab if you have the spare change. docs don't tend to have the nutritional info available on and pertinent to chronic illness. and they don't tend to refer to nutritional specialists either. if tests aren't feasible you can always review your diet and compare to recommended daily intakes of essential nutrients. you're bound to turn up useful action items if you decide take steps along these lines.
Jimmylegs is absolutely right: "docs don't tend to have the nutritional info available on and pertinent to chronic illness."

From 2006:– 23.9 hours of nutrition instruction (???!!!).

http://www.ncbi.nlm.nih.gov/pubmed/16600952 "Status of nutrition education in medical schools."

"On average, students received 23.9 contact hours of nutrition instruction during medical school (range: 2-70 h). Only 40 schools required the minimum 25 h recommended by the National Academy of Sciences. Most instructors (88%) expressed the need for additional nutrition instruction at their institutions."

From 2010: even worse.

http://www.ncbi.nlm.nih.gov/pubmed/20736683 "Nutrition education in US medical schools: latest update of a national survey."

"Overall, medical students received 19.6 contact hours of nutrition instruction during their medical school careers (range: 0-70 hours); the average in 2004 was 22.3 hours."

Re: At this point

Posted: Sat Oct 18, 2014 6:34 am
by fyother
So unless they are specifically training to specialize in a particular area then one wouldnt know what to do. Such as at the hosp, I only saw a PA, no Dr and she had no clue and let me go home. Which all in all that's what she was probably told to do. Thank you for the info guys, yall are awesome. I have a referral to a Specialist.

Re: At this point

Posted: Sat Oct 18, 2014 7:59 am
by jimmylegs
sorry to hear about the throat spasms :( i've had those and they can be terrifying! in my case they were readily corrected with a boost to my magnesium status. you can evaluate your diet and lifestyle for factors that can be beneficial or detrimental to magnesium status. also, if you're in the states, a private serum test may be affordable.

a useful first step could be to assess your diet for magnesium content in mgs per day. here is a web site where you can find healthy sources with mgs of magnesium per serving: http://www.whfoods.com/genpage.php?tnam ... #foodchart note that the 1c servings of spinach and chard are measured based on the leaves being boiled (spinach for 1 min, chard for 3), ie much more densely packed (and with lower oxalic acid content) than raw leaves.

mainstream recommendations are on the order of 320-400mg per day for adults. that recommendation doesn't take into account individual exposure to other factors that can interfere with magnesium status, such as choice of drinking water, level of emotional or physical stress (be it interpersonal, traumatic accident/surgery or simple exercise), or alcohol or caffeine consumption (ie diuretics), to name a few.

if you determine that your magnesium intake is suboptimal, then while treating apparent magnesium depletion symptoms it could be helpful to try for 600mg of magnesium intake per day. in order to maintain levels over the long term, 400mg per day is likely more suitable.

sometimes a supplement can help reach a daily target. not all supplements are created equal - you can easily waste your money on cheaper, poorly absorbed forms. magnesium glycinate is an excellent choice. i currently use this: http://orangenaturals.com/essential/mag ... g_60v_cap/

personally, i tried a supplement before doing the detailed work on diet, to get a quick fix. that way, i had a more comfortable time while working out all the dietary details. in my case, the problem with my throat would resolve within an hour of taking a magnesium pill. even so, it took a very long time for me to rebuild depleted stores and be able to go a day without feeling it if i skipped a magnesium pill. it was only in the last year or so (ie about 5 years after starting mag therapy) that i finally experienced an odd muscular weakness in my legs, which was associated with my having added a second mag pill to my daily routine. the problem resolved when i dropped back to one pill per day.

magnesium deficit and dysphagia have been linked in research, however there is one case report (70 y o woman) published recently in which progressive dysphagia treated with magnesium infusion caused worsening of symptoms. in that case, the scenario involved progressive dysphagia involving multiple previous mechanical dilations of the patient's esophagus. in other words, not your average patient dealing with throat spasms. http://casereports.bmj.com/content/2014 ... 3.abstract

i would suspect in that case that the docs tried mag infusion for her due to older studies like this one:
http://www.annualreviews.org/doi/abs/10 ... alCode=med
"Dysphagia has recently been associated with magnesium deficiency (82, 83). The dysphagia is completely reversible with magnesium repletion."

fyi, serum magnesium test you can order yourself: http://www.lef.org/vitamins-supplements ... Blood-Test

also, a couple times in the past people on tight budgets have sent me their typical shopping lists for advice on ways to reallocate funds to optimize nutrient density of food intakes.

hope some of that helps :)

Re: At this point

Posted: Sat Oct 18, 2014 10:20 am
by fyother
Wow. I was taking magnesium but stopped because I didn't know what all Dr's would want to check. I bet that's why it started. I may start taking it again then. Although today has been better. Thank you for the info. I will be checking all of this out. Your a big help.