Nearly diagnosed looking for answers

[Snargle]

I’m a 40 year old father of 3 and active military. My wife is a family practice doctor and is effectively my doctor as well. I had a series of very strange neurologic symptoms August to October this year which made no sense. For a while she was convinced I had cauda equina syndrome, but when my symptoms disappeared just prior to the spinal MRI she began to suspect it was a psych issue. That did not sit well with me. Her explanation was that multiple neurological symptoms don’t just resolve on their own. In retrospect it didn't help that I wasn't telling her all my symptoms. Some of them I didn't understand or explained away, but others I didn't want to share because I hate being sick and considered “diseased”.

About a month later, my mother got a brain MRI for an unrelated issue and was diagnosed with MS. They are still attempting to figure out if it is PPMS or SPMS, but either way its serious. My sister had a clinical diagnosis of “Probable MS” 3 years ago, but her MRI came back normal and she lost her health care. She has been dealing with the issue since then, but basically living in denial. When my wife heard that my mother had MS a light came on and she began looking into the symptoms which lined up 100% with mine:

Numbness that started in left toes and climbed up left leg to the “saddle area”
Loss of sensation in the “saddle area”
Blurred vision and pain in left eye
Visual field defect in left eye
Urinary frequency, urgency, and incontinence
Massive fatigue
Uhthoff’s Sign
Lhermitte’s Sign
Intention tremor in right hand

Most of these symptoms resolved in late October. My vision has improved, but is still blurred and the visual field defect has been objectively observed. I didn’t see the ophthalmologist until after the symptoms resolved and there was no evidence of swelling in the optic nerve, so not a definitive case of Optic Neuritis. The numbness has gone away, as well as Lhermitte’s Sign (thank god), but I still have some lingering urinary issues and horrible fatigue.

I see my neurologist on Thursday (11 Nov) and already have an order in for a MRI with dye. In the past few years I had a few cases of numbness, urinary issues, and blurred vision that I wrote off. Based on this my wife says I already meet the criteria of separation in time and space. I gave away the majority of my blood for labs of the usual MS differentials including Lyme disease which came back negative.

I’m at a critical point in my life from a planning perspective. I need to decide if I am going to try to stay in the military another 6 years and retire for real or get out and start a new career that is MS friendly, effectively working the rest of my life. If I stay in the military I will have to fight annual medical evaluation boards, but the difference in retirement pay is significant between now and 6 years out. I need to have some idea of what to expect and how serious exacerbations can be.

Really what I need to know is, assuming I do have exacerbations, should I expect previous symptoms to reoccur and possibly get worse, or should I expect completely new symptoms? I want to stay in the military, and think I could make it happen with my current symptoms. If I get muscle weakness, vertigo, or a few other symptoms I will not be able to stay in the military. I’ve read the technical medical literature and research with some translation from my wife and I understand the unpredictable nature of this disease. What I’m looking for is real experiences from with people who have lived with this, not a doctor/PHD researcher writing a paper or conducting a clinical trial.

In your experience, during exacerbations did your previous symptoms reoccur and get worse, or did you typically get new ones?

[lyndacarol]

Welcome to ThisIsMS, Snargle.

I am not sure that anyone has the definitive answers about MS that you are seeking. I hope you are open to general opinions on your situation, including mine.

With your wife being a family practice doctor, you are in a unique position. First of all, as you both probably know, MS is a diagnosis of exclusion. The symptoms of MS are common to many other conditions, which must be ruled out before the diagnosis of MS can be made.

In my opinion, since all your symptoms are consistent with a vitamin B12 deficiency, I think this is the first possibility to be ruled out. A serum B12 test alone is not adequate to determine a deficiency; a serum homocysteine test ((Hcy), a serum or urinary methylmalonic acid test, and possibly a HoloTranscobalamin (HoloTc) test should be used to confirm or rule out a deficiency in the blood. (Vitamin B supplements should not be used before testing, as this will skew test results.) Other more expensive tests are used to confirm or rule out a functional deficiency in the tissues.

By the way, any person at any age can develop a B12 deficiency. B12 deficiency runs in families – have your mother and sister been thoroughly tested for a possible deficiency? A B12 deficiency can be treated easily and inexpensively; if caught early, symptoms are usually reversible.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

[Snargle]

lyndacarol,

We have ruled out all the obvious suspects. Unfortunately my B12 levels are normal. I am low on vitamin D, but that is not surprising.

[lyndacarol]

We have ruled out all the obvious suspects. Unfortunately my B12 levels are normal. I am low on vitamin D, but that is not surprising.

I'm glad to hear you have ruled out all the obvious suspects. Since the first symptom you listed was "numbness that started in left toes" (a.k.a. peripheral neuropathy), I assume the possibilities you have ruled out are those recommended here for investigation by the University of Chicago:

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

As for "B12 levels are normal," it is my understanding from the book, Could It Be B12?, that many experts believe US labs have outdated standards for B12 levels:

On page 11:

There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.

Compare your B12 test result numbers to those recommended by the authors.

The road to diagnosis is not easy, but you are fortunate to have an ideal guide there beside you (your wife!).

[MSBS]

I’m a 40 year old father of 3 and active military. My wife is a family practice doctor and is effectively my doctor as well. I had a series of very strange neurologic symptoms August to October this year which made no sense. For a while she was convinced I had cauda equina syndrome, but when my symptoms disappeared just prior to the spinal MRI she began to suspect it was a psych issue. That did not sit well with me. Her explanation was that multiple neurological symptoms don’t just resolve on their own. In retrospect it didn't help that I wasn't telling her all my symptoms. Some of them I didn't understand or explained away, but others I didn't want to share because I hate being sick and considered “diseased”.

About a month later, my mother got a brain MRI for an unrelated issue and was diagnosed with MS. They are still attempting to figure out if it is PPMS or SPMS, but either way its serious. My sister had a clinical diagnosis of “Probable MS” 3 years ago, but her MRI came back normal and she lost her health care. She has been dealing with the issue since then, but basically living in denial. When my wife heard that my mother had MS a light came on and she began looking into the symptoms which lined up 100% with mine:

Numbness that started in left toes and climbed up left leg to the “saddle area”
Loss of sensation in the “saddle area”
Blurred vision and pain in left eye
Visual field defect in left eye
Urinary frequency, urgency, and incontinence
Massive fatigue
Uhthoff’s Sign
Lhermitte’s Sign
Intention tremor in right hand

Most of these symptoms resolved in late October. My vision has improved, but is still blurred and the visual field defect has been objectively observed. I didn’t see the ophthalmologist until after the symptoms resolved and there was no evidence of swelling in the optic nerve, so not a definitive case of Optic Neuritis. The numbness has gone away, as well as Lhermitte’s Sign (thank god), but I still have some lingering urinary issues and horrible fatigue.

I see my neurologist on Thursday (11 Nov) and already have an order in for a MRI with dye. In the past few years I had a few cases of numbness, urinary issues, and blurred vision that I wrote off. Based on this my wife says I already meet the criteria of separation in time and space. I gave away the majority of my blood for labs of the usual MS differentials including Lyme disease which came back negative.

I’m at a critical point in my life from a planning perspective. I need to decide if I am going to try to stay in the military another 6 years and retire for real or get out and start a new career that is MS friendly, effectively working the rest of my life. If I stay in the military I will have to fight annual medical evaluation boards, but the difference in retirement pay is significant between now and 6 years out. I need to have some idea of what to expect and how serious exacerbations can be.

Really what I need to know is, assuming I do have exacerbations, should I expect previous symptoms to reoccur and possibly get worse, or should I expect completely new symptoms? I want to stay in the military, and think I could make it happen with my current symptoms. If I get muscle weakness, vertigo, or a few other symptoms I will not be able to stay in the military. I’ve read the technical medical literature and research with some translation from my wife and I understand the unpredictable nature of this disease. What I’m looking for is real experiences from with people who have lived with this, not a doctor/PHD researcher writing a paper or conducting a clinical trial.

In your experience, during exacerbations did your previous symptoms reoccur and get worse, or did you typically get new ones?

HERE ARE THE REAL ANSWERS- Google this MS does not exist, what You all have is Lyme parasites, they can be micro tiny and hide even in the white blood cells, or be even as big as 2 inches long. Google MS is Lyme, or Anatomy of a cover up.
Or Lyme is parasitic and bacterial, we have all been lied to ........

http://owndoc.com/lyme/multiple-scleros ... -cover-up/

[Snargle]

lyndacarol,

My wife confirmed my B12 levels are good. She has also had me screened for everything on the list except the oral glucose test. I will ask her about that one. She dug into this pretty deep once she suspected my issue was MS.

[Snargle]

MSBS,

I read a bit of the website you suggested and I am extremely skeptical. It opens up with a conspiracy theory that pharmaceutical companies and doctors have been collaborating against MS patients since 1911. The reason they did this was to charge MS patients huge sums of money for treatment. The immediate issue I see with this is that until recently there was no treatment for MS. So there was a conspiracy for 80 years to over charge people before creating a treatment?

[jimmylegs]

hi and welcome snargle

you might find some useful info at these older topics:

looking for bloodwork advice
http://www.thisisms.com/forum/diet-f9/t ... 83-15.html

Blood test results - Calling Jimmylegs
http://www.thisisms.com/forum/natural-a ... 18788.html

Jimmylegs: please take a look at my lab results
http://www.thisisms.com/forum/general-d ... 21690.html

Dx Possible MS - Jimmylegs was right about low mag!: Undiagnosed - This Is MS ...
http://www.thisisms.com/forum/undiagnos ... 24085.html
(this is my favourite kind of member - the kind that shows up with ms concerns, gets the right testing, takes the right steps, and then promptly disappears from TiMS never to be heard from again saja's last post, also from jan of 2014: http://www.thisisms.com/forum/post220736.html#p220736 )

Post subject: Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS
http://www.thisisms.com/forum/chronic-c ... ml#p223430