Feeling very frustrated and sad

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Feeling very frustrated and sad

Postby Seuriu » Fri Apr 11, 2014 11:22 am

I just got back from seeing a second neurologist (this time an MS specialist) and although she was very nice and thorough I'm upset that I don't have an answer for everything that's going on. The last neurologist that I saw tried to tell me that my symptoms (including foot drop and vision colour loss) were due to fibromyalgia but my rheumatologist disagreed and said that I needed to see a different neurologist. I've had an MRI and there is 1 small spot but nothing defining, so she ordered another MRI. She says that if the next MRI comes back normal then we can rule MS out. She also ordered some tests for auto immune diseases.

My symptoms have been coming and going over the past 2 years, lasting from a few days to a few months and they include foot drop, vision colour loss in right eye, pain when moving eyes side to side, nerve pain in legs, muscle spasms and stiffness in legs, intention tremors, shakiness, difficulty thinking and speaking, bladder problems, numbness and tingling in my arms/hands, and generalized numbness from my waist down.

What could this be if it isn't MS? It has to be SOMETHING right? This doesn't just happen for no reason...
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Re: Feeling very frustrated and sad

Postby CaliReader » Fri Apr 11, 2014 12:34 pm

You could ask for a lumbar puncture and an mri of your cervical spine. You could also visit an ophthalmologist to test whether you've had optic neuritis. There are about 400 listed 'mimics' of ms, so doctors are slow to diagnose if it's not clear to them. Hopefully you have had blood tests for a lot of diseases including diabetes and hiv.

You can also go back to your general doc and ask for help with pain and numbness. If you still have bladder issues, you can ask for help with that, or a referral to urology.

My experience with diagnosis was that ms symptoms can be a little like a ghost that disappears when you try to show it to someone else. I knew I had it from the moment I read the list of symptoms, but convincing my doctor took both an mri with lesions and symptoms he could observe that were typical of ms. Several times the symptom disappeared before the appointment.

I wouldn't stop trying. You might have something treatable. Or you might have ms. But if it is ms, you need to get used to two levels of treatment. Diagnosis and ms treatment don't help symptoms. Feeling better via symptom treatment is completely separate, so you could start that part now, before diagnosis. I hope you don't belong to this club, but if you do, welcome.
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Re: Feeling very frustrated and sad

Postby lyndacarol » Fri Apr 11, 2014 2:52 pm

Seuriu wrote:I just got back from seeing a second neurologist (this time an MS specialist) and although she was very nice and thorough I'm upset that I don't have an answer for everything that's going on. The last neurologist that I saw tried to tell me that my symptoms (including foot drop and vision colour loss) were due to fibromyalgia but my rheumatologist disagreed and said that I needed to see a different neurologist. I've had an MRI and there is 1 small spot but nothing defining, so she ordered another MRI. She says that if the next MRI comes back normal then we can rule MS out. She also ordered some tests for auto immune diseases.

My symptoms have been coming and going over the past 2 years, lasting from a few days to a few months and they include foot drop, vision colour loss in right eye, pain when moving eyes side to side, nerve pain in legs, muscle spasms and stiffness in legs, intention tremors, shakiness, difficulty thinking and speaking, bladder problems, numbness and tingling in my arms/hands, and generalized numbness from my waist down.

What could this be if it isn't MS? It has to be SOMETHING right? This doesn't just happen for no reason...

Welcome to ThisIsMS, Seuriu.

With the symptoms you described, MS is always a possibility until the other conditions that share the same symptoms are ruled out. MS is an exclusionary diagnosis. At the present time, all your symptoms could also be due to a vitamin B 12 deficiency. Any of your doctors can order the tests; ask your GP, your rheumatologist, both of your neurologists.


Numbness/tingling in the legs and arms is the textbook definition of "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
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 definitely think this is the place to start. 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.

You may find information in the following video useful: "Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0

I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

By the way, alcoholic beverages depletes vitamin B12 – not good, if you are even borderline B12 deficient.

If you are found to have a vitamin B 12 deficiency, it is easily treated with B12 supplementation; when it comes to MS, the cause is unknown and the "experts" have no effective treatment for it.
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Re: Feeling very frustrated and sad

Postby ElliotB » Sat Apr 12, 2014 12:23 am

"This doesn't just happen for no reason..."

You are correct. So act accordingly. There are many things you can do to help yourself until you find out exactly what is going on. Changes in lifestyle, diet, and exercise may help you to feel better sooner.

Good luck.
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Re: Feeling very frustrated and sad

Postby jimmylegs » Sat Apr 12, 2014 8:52 am

hi seuriu and welcome to the forum :)

before i was diagnosed i had symptoms similar to those you describe, and although i had to experience a bit of a crisis to make me really sit up and pay attention, in fact many of my problems disappeared with proper attention to nutrition.

fyi:

regimens-f22/topic2489.html#p15460
"If you have an MS (or other) diagnosis, you are likely to have a constellation of nutrient imbalances that have been extensively researched. unfortunately, the knowledge gained via this research is only sporadically applied to mainstream treatment.
ms patients and healthy controls can typically all be described as 'normal'. the difference between patients and 'healthies' is RELATIVE deficiency, generally found within the normal range, eg low normal vs high normal. ... "

here is a list of nutrient levels seen in healthy controls:

regimens-f22/topic2489.html#p15460
serum vitamin B12: aim for at least 500 pg/mL or 370 pmol/L.
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). ...
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL).
serum selenium: two reference ranges found..
1..........0.90 to 2.00 µmol/L (adults)
..........< 0.3 µmol/L (in adult) - supplementation may be required
..........> 2.5 µmol/L (in adult) - possible toxicity
2..........1.02 to 1.91 µmol/L, OR 80 to 150 µg/L (molecular weight of Se is 78.96)
serum calcium: just a link to p. 11 for now, more later: regimens-f22/topic2489-150.html#p57111
serum uric acid: aim for 290-300 umol/L (about 5 mg/dL).
serum hemoglobin: at least 13
serum ferritin: i used to go for 100, now I go for 80 because some studies have shown increased disease risk at levels 80 and higher.

you can be proactive by examining your diet for possible imperfections regarding nutrition. if you are interested i can point you at a variety of excellent resources to help you figure things out. for example, the general population don't have enough magnesium in their blood, and they don't eat enough in diet. ms patients are even worse off than the average joe. ideally, you should be getting close to 600mg of magnesium from food daily. you can check out this list and the mgs per serving size to see whether or not you are on track:
magnesium foods http://www.whfoods.com/genpage.php?tnam ... nt&dbid=75

that site has pages for each of the essential nutrients extremely handy resource! feel free to ask any questions you may have :D
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Re: Feeling very frustrated and sad

Postby Seuriu » Sat Apr 12, 2014 12:15 pm

Thanks so much for the replies :)

I'm getting the bloodwork done today. As far as nutrition goes, I try to follow a 75% raw food diet which I've fallen off a bit this winter but am getting back on board with. I juice almost every day to make sure I'm getting enough greens and I walk every day for an hour while my toddler naps.

I'll check out the links provided, thank you again!
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Re: Feeling very frustrated and sad

Postby jimmylegs » Sat Apr 12, 2014 12:44 pm

hi no problem :) raw food is important and juicing can certainly help! your daily walking habit is important too :D

iima, can you elaborate a little on typical raw food meals, and juice ingredients? also, what do you typically eat other than the juices and raw foods?

it may prove useful to see if there are any essential nutrients missing from your overall picture. there are any number of individual or combination nutrient problems that can result in a wide variety of odd symptoms...

just as a simple stepping off point, do you by any chance happen to know if you are getting 600 mg of magnesium daily? that's one of several i'd suggest could be worth a closer look :)
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