Brushed off by Neuro as Anxiety. Practical advice now?

[TRae]

Hello all,
New to this board, new to the potential of MS/some other neurological issue becoming prominent in my life. New to the deep fear this is causing. 32 yr old Female, otherwise "healthy." Similar to many posts I've read here, I have started exhibiting nearly ALL symptoms I can find listed here, episodes becoming worse over the past two years. Regular/primary Dr. thought MS, MRI shows clear (which I can also see in many posts that clear MRIs can also be common even with disease onset). Referred to Neuro, and was blown off (rather rudely) as ANXIETY. (when I am one of the most UN-anxious people alive). I see being blown off with 'anxiety" as a cause is also common. Since medical professionals have nothing more to offer me at this point, I need practical advice. Suggestions for diet to reduce potential of more flare ups? We already eat extremely well, no trans fats, no artificial sweeteners, gluten avoidant (although not 100% eliminated). Also exercise advice? I am very active/biking/running. Do activities, when I can actually move to participate in them, make things worse? Better? What steps should I be taking, under the knowledge that there IS something still deeply wrong even though I am not being taken seriously by the medical professionals yet? I'm coming off of a debilitating and terrifying 10 days of symptoms...now lessening but not gone. Thoughts from the board? I humbly welcome any advice or opinions that you have.

[jimmylegs]

hi and welcome sorry to hear you had a bad xp with the neuro :S

let me refer you to my last post related to athletic nutrient depletion
http://www.thisisms.com/forum/undiagnos ... ml#p218944

and also to my signature link below (sorry you have to cut and paste it into a browser - I can't make it 'clickable' in the signature field)
there you will find a detailed summary of the info I have compiled on preventative nutrition to date.

are you in the states? if so you could think about ordering serum magnesium online. it's $18 or something close to that and you could have the results in days. very relevant esp where anxiety is in the mix. have to head off to work for a bit. will check in later this aft.

[lyndacarol]

Hello all,
New to this board, new to the potential of MS/some other neurological issue becoming prominent in my life. New to the deep fear this is causing. 32 yr old Female, otherwise "healthy." Similar to many posts I've read here, I have started exhibiting nearly ALL symptoms I can find listed here, episodes becoming worse over the past two years. Regular/primary Dr. thought MS, MRI shows clear (which I can also see in many posts that clear MRIs can also be common even with disease onset). Referred to Neuro, and was blown off (rather rudely) as ANXIETY. (when I am one of the most UN-anxious people alive). I see being blown off with 'anxiety" as a cause is also common. Since medical professionals have nothing more to offer me at this point, I need practical advice. Suggestions for diet to reduce potential of more flare ups? We already eat extremely well, no trans fats, no artificial sweeteners, gluten avoidant (although not 100% eliminated). Also exercise advice? I am very active/biking/running. Do activities, when I can actually move to participate in them, make things worse? Better? What steps should I be taking, under the knowledge that there IS something still deeply wrong even though I am not being taken seriously by the medical professionals yet? I'm coming off of a debilitating and terrifying 10 days of symptoms...now lessening but not gone. Thoughts from the board? I humbly welcome any advice or opinions that you have.

Welcome to ThisIsMS, TRae. We are here to help you in any way that we can. I think that all of us can understand the fear you are experiencing; take a deep breath. You know your body best. If you think there is a physical problem, there probably is.

You say, "I need practical advice;" here are my suggestions:

Compare your initial neuro exam with the following suggestions from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest

If none of the blood tests listed were ordered by your neurologist, ask your GP to perform some or all of them:

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 (Zinc, magnesium, vitamin D, and copper are also recommended by jimmylegs here at TIMS.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (In addition, I suggest a "fasting blood insulin test" – NOT the same as blood sugar/glucose testing.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Gluten sensitivity is linked to neurological symptoms. A mannitol-lactulose test for Intestinal Permeability could also be helpful.)
Lyme disease
HIV/AIDS
Hepatitis C and B



As for "suggestions for diet to reduce potential of more flareups," I direct you to our Diet forum [Dr. Terry Wahls has seen dramatic improvement in her MS symptoms with diet and exercise (http://www.TerryWahls.com)]. You do seem to have an excellent diet – I can only guess that you are sensitive to ANY gluten, which increases your blood sugar level and, in turn, increases your insulin level. (The optimal fasting blood insulin level is 3 UU/ML or lower.) If your insulin level is elevated, this is probably causing insulin resistance which may be the source of your symptoms.

In part two of the 7-part presentation on Celiac by Gary Kaplan, D.O., the atypical or extraintestinal form with its neurological manifestations is described:


I have no medical background. These are my unique suspicions or opinions about MS, not accepted by any "expert" to my knowledge.

[TRae]

Thank you! I have done some of these tests above, but not all. I will bring them back up, as my primary care doctor is very understanding and willing to work to solve my "mystery." (wish I could say the same for the NEURO! MEAN!) I do know my thyroid and fasted glucose test were normal, and that they tested for mono, Lyme disease, and Lupus. All negative conclusions. I know "negatives" and "clear MRIs" are good things but also very frustrating and powerless. Will follow up on some of the rest of these...thank you!

[bartman]

You are aware that a negative Lyme test does not mean you do not have Lyme, aren't you? If not read this link.
http://lymedisease.org/news/lyme_diseas ... -bill.html

Furthermore, Lyme disease is the most controversial disease in the history of medicine!! The testing is unreliable, the treatment often requires longer term antibiotics than IDSA guidelines permit, there are two views on how to treat the infections IDSA vs ILADS, the most commonly misdiagnosis of Lyme is MS and they both can present the same MRI. And Lyme disease is only one of several infections that are typically transmitted by the same vector, in other words the coinfections of chlamydia pn, mycoplasma pn, babesia, bartonella and many others are just as important to test for and treat as lyme. Take time to investigate the controversy, the infections I listed above and get another opinion from a knowledgable LLMD or Lyme Literate doctor (go to a lyme forum for help in finding someone). IMO it's bartonella that is the problem. Hope this helps and hope you get well soon!

[amberfer]

I know everyone has different suggestions and I don't want to overwhelm you. Here is my experience:

I have been diagnosed with generalized anxiety and bipolar disorders for several years. When I started experiencing leg weakness, I incredulously told my psychiatrist, "I'm so depressed I can hardly walk...my legs are so weak I have to slide down the stairs!" She was actually the first one to say, "Maybe you have MS."

When I went to the ER because one morning I could not walk at all, that doctor told me my MRIs were clean and said, "Are you sure you aren't making this up for attention?" I said, "If I were, I wouldn't tell you." In my head, I added, "Dumbass."

I saw a neurologist who looked at the same MRIs and found lesions.

All that to say - see a different neurologist! And not to judge those who are suggesting other causes, because yes, many different things can cause MS-like symptoms...but these are things your neurologist may test for. If you do have a neurological disease, you need to start disease-modifying medication immediately to slow down the progress of the disease - it may have already done permanent damage in your body.

Some folks honestly have had great experience with diets and supplements and pursuing theories! And someday I might too. But I want to go first with what is proven, and then I might experiment with different things, so I lessen the amount of damage the disease is doing to me.