A 4 year battle- Including LOST spinal fluid..

[Jax37000]

2012 My symtoms began... all on the left side. Numbnes/tingling/decreaded sensation in left foot and in my pinky and ring fingers in my left hand (I'm left handed).I was training for (not my first) marathon and one day my left leg was giving me trouble... It felt like a desensitized "Brick". Heavy, annoying, and bothersome. The numbness and tingling got worse, and spread up my neck a little. I was EXHAUSTED weeks later. No matter how much I slept or napped I was so tired that I didnt want todo anything. I went to my doc and over the course of a few months I was tested for every autoimmune diesease and condition under the sun, EKG, sed rate, RA, CBCs, vitamins, etc etc..... all clear. I started getting a tight squeeze pain deep under my left rib, then it was a stress test, chest xray, lung xray, etc... my throat started to feel funny when swallowing so they then ordered a thyroid untrasound... nothing.... eventsully my doc said "Are you sure you weren't in a car accident or sports injury?" and I remembered I had a cycling accident several months prior, where I hit my head. He ordered an MRI. That's when the leison was found. He called to tell me it had nothing to do with my chcling accident but it did explain my odd symptoms, and sent me to a
neurologist. The neurologist was one that worked with my mom (RN) for many years and knew aitoimmune diseases run in our family... He did some basic tests in the office and said "The leison is indicitive of MS... but it's not just that easy to diagnose... we need to do a spinal tap." I droped out of the marathon and did the spinal tap....
hoping for some answers after several months of tests. (My veins were so blown from the frequent blood tests) Spinal tap done, it was time to wait............. until over a week later I got a call saying the post op RN messed up and my fluid is "gone".... "never made it to the lab"....

I was so upset that I went through all that and no answers! I gave up....... about a
month later my symptomsfaded away. I told myself "Maybe it was just stress related if itcould all just go away like that"...

A year later (same time during the summer) I felt exhausted, sore, beat up.... I told my doc I thiught was D was low. She tested me and said "Its not horribly low, but lets do a 50,000iu to see if it helps." I tookit for 8weeks and didn't feel any better about a month after it started to fade away.

2 Years later... summer again... I started feeling tired again. My D and B12 are in normal range... I started feeling brain fog, and numbness started to creep into my left foot again. I fell down the stairs in my house because my left foot "just got stuck" on the stair behind me as I was going down... it was really bizarre..... other than some knee bruiseson my left side, I wasn't hurt. 2 weeks later my left foot was "dead" feeling... I couldn't wiggle my left 3 toes on my left foot. I was tripping and ripping flip-flops weekly.

The first week of August I got into a car accident going 45mph. (fell asleep/blackedout??? I dont know but I 'woke up' the second nefore I hit the car..) I did hit my head-on the drivers side window but was conscious for that. No cuts or bruises and no whiplash... I went home after the ambulamce checkedmy blood sugar (normal) and blood pressure (high bc I was scared of course) and said Icoukd sign offans go home).... 5hrs later I had my brotherdrive me to the ER because I felt a little off balance. CT showed I was good. Within a week the same numbness on my leftsode spread. My whole leg was going numb. Saw my primary and she said itdidnt sound like postconcussion syndrome and my peg shouldn't stay numb like that. She wanted me to see my neurologist..... a week later my left side of my face is numb, the "swallowing my swollen tongue" feeling comes back, brain fog is bad, (wrong words all the time),super fatigue, pulsating left ear that turns read and burns, and the numbnessinmy left face feels likesomeone has their hand "starfished" on myface. I have been getting facial twitching, and om a walkthe otherday I thought ot was raining (thought I saw rain coming down) but it wasn't....

My neuro didn't even do any tests... he just said "I'm sorry yourspinal fluid got lostyears ago.... I couldn't believe that...I thought you would have come back for answers sooner than this......Many of yoursymptoms certainly still say MS to me, but we may have more thanomething going on here... lets get you another MRI, its about time,huh?"

SoI have an EEG and brain MRI w contrast in 3days (Tues)......

1. Is the EEG only to rule out seizures or can there be
some kind of indication of MS in the brain waves?

2. If it IS MS after 4 years there WOULD be a difference on the MRI, right?

3. Do you think he will make me do another spinal tap?

[lyndacarol]

… I told my doc I thiught was D was low. She tested me and said "Its not horribly low, but lets do a 50,000iu to see if it helps." I took it for 8weeks and didn't feel any better about a month after it started to fade away.
…
2 Years later... summer again... I started feeling tired again. My D and B12 are in normal range.
…
SoI have an EEG and brain MRI w contrast in 3days (Tues)......

1. Is the EEG only to rule out seizures or can there be
some kind of indication of MS in the brain waves?

2. If it IS MS after 4 years there WOULD be a difference on the MRI, right?

3. Do you think he will make me do another spinal tap?

Welcome to ThisIsMS, Jax37000.

I cannot answer your three questions (I have no medical background); every person's case is different.

My comments concern your history of low vitamin D: What in the world did your doctor mean by her comment, "not horribly low?" And what was "normal" – low normal or high normal? You need to call her office and obtain the actual test result numbers. Or if these are not available, ask for a new vitamin D test (the "25-hydroxy D") and ask for your own copy of the test results.

If your vitamin D level was low enough at one time to justify treatment with 50,000 IU, your vitamin D level should be monitored with a test at least once (or even twice) per year (to be sure that you are maintaining an optimal level). Vitamin D deficiency is very common and can result in neurological symptoms. I am not saying that all your symptoms are due to vitamin D deficiency; but I think a test should be done. Read through the website from GrassrootsHealth (http://www.GrassrootsHealth.net) for general info on vitamin D.

Also, would you share the actual test result numbers for your vitamin B12 testing? There is debate among B12 experts as to what range constitutes "normal."

[Jax37000]

I don't remember the exact numbers, but I can tell you my doctor would rather both D and B12 be higher than lower... for example- I can still be in the "Normal" range for both but if it's low for MY "typical", she would rather bump me back up a little. For 10years my B12 and D get tested once or twice a year, just because I got really low with D once several years ago (I was at 14 for D.) now she is overly cautious

[Scott1]

Hi,

I think a fresh MRI is a good idea. You can't go on not being looked at again.

It's doubtful you were tested for everything. Even a standard test looks a mile long. Your fatigue is a big issue. If they do a string of blood tests again just get them to add a uric acid test. Normally they would do urea and not uric acid. If it was high they would think of gout but in your case it may be low. If it is low then that would explain and confirm the fatigue. Uric acid is the last stage in purine metabolism. If it's low you aren't making energy.
Regards,

[Jax37000]

They did that urine jug test, where I had to dispose of all urine a refriderated "milk jug" of sorts for 24hours or so... they did that test to rule out several "possibilities".... Not sure everything that it showed but it came back clear/no abnormalities... and when I said they tested me for "everything"I mean I had 10 or so vials ofblood taken every week for almost 3months... Because my mom has Fibromialgia with several complications, my dad had possible MS 20years ago and never went back, my brother had a heart attack at the age of 28, and rare blood disorders (such as thrombocytopenia) run in my family... so they literally took months of ruling out MANY unrelated things because nothing is "too weird" for my family...

[Scott1]

Sorry. I haven't made myself clear. Its a blood test.

[Jax37000]

Oh, I see... I'm not sure what the last 20things they did... they did the typical in the ER- SED rate, cbc, etc.. plus vitD, B12, and thyroid full panel... the my primary did more.

[Scott1]

The urine test could have been looking for infections or some metabolic outcomes. The uric acid test is the one I imagine they would not not do unless you looked like you had gout. They know what to do if it is high but they ignore it if it is low. Low means something.
Uric acid is neuroprotective.
It is catalysed from enzymes ( xanthine and hypoxantine) and makes up about half the antioxidant capacity of blood plasma. It is excreted via the kidneys hence the confusion between urea and uric acid. A low dietary intake of zinc will lower the uric acid level. If you are iron deficient or use oral contraceptives then you will will also have lower uric acid. What your PH level is like has an impact as well.
Some people supplement with zinc, some use inosine. The issue is are purines able to be metabolised?
Check the level first. Don't goal seek to a number, use the laboratory reference range as a guide.
Good dietary sources are fish (particularly sardines), meat (particularly offal) and some green vegetables.
If it is low then it says something about the level of inflammation in your body which implies checking for more unusual infection, looking at diet (all the good ones have low/ no added sugar in common) and adjusting elements of your lifestyle. For infection look for mycoplasmas, chlamydias and EBV (I think you will have that one). Happy to make some suggestions when you know.

Regards,

[Jax37000]

Funny you mentioned EBV, I did test positive for "having it in the past" in 2012...but the doc said it was not active and he thought it was possible that it was a few years prior that I had it.

[lyndacarol]

EBV, I did test positive for "having it in the past" in 2012...but the doc said it was not active and he thought it was possible that it was a few years prior that I had it.

Risk factors for multiple sclerosis: decreased vitamin D level and remote Epstein-Barr virus infection in the pre-clinical phase of multiple sclerosis (2012)
Masaaki Niino
http://jnnp.bmj.com/content/83/12/1135.extract


At 14 ng/mL, your vitamin D level was dangerously low. I am glad to hear your doctor monitors your level regularly. Please read through the California-based GrassrootsHealth website, http://www.GrassrootsHealth.net

[Scott1]

Hi,

The EBV is a pretty simple call. It is quite common in the general population. In a sense there is no such thing as a past infection. It is in the herpes family like cold sores or shingles etc. Once you have it, you always have it. The assumption is you gradually get control of it so it becomes relatively harmless. EBV infection is often accused of being central to MS but it's hard to prove. An EBV infected B cell gives of an excess of superoxide and perhaps that is the start of the problem but it is conjecture. All sorts of infections can give off other agents known as cytokines and chemokines. Some of them are dependant on each other so it becomes messy to unscramble the associations. Variables like PH and temperature further confuse the picture.
My own preference is to treat the EBV as a central problem and take valacyclovir for it so I stop the replication. Before I would do that I would check for any other infections, particularly ones that just are often not checked for like mycoplasma, chlamydia, bartonella, babesia or lyme. If you don't check, you don't know.
The first page of this post sort of covers my thinking - http://www.thisisms.com/forum/regimens- ... 24019.html

Vitamin D is important but I am not much use on that topic. There is a powerful trend to lower cholesterol and you need that to make Vitamin D. I am always confused by advice to lower cholesterol when it is required to make myelin and Vitamin D . Too hard for me!

You will need to start to look at the test results and compare them to the reference ranges. Too often doctors miss things if other numbers are their focus.

Regards,

Regards,

[Anonymoose]

Hi Jax,

Given your history with marathon training and your symptoms, you might want to try a potassium supplement to see if it doesn't help with some symptoms like fatigue and altered sensations. I absolutely have ms but have found that potassium helped greatly with the fatigue and most altered sensations I began feeling early this past spring. I assume I depleted myself of potassium last fall/winter by using a sauna daily and didn't figure out it was potassium until a couple weeks ago when my leg muscles and joints were constantly sore. Just one 99mg capsule had a huge impact so it was easy to figure out quickly. Potassium labs aren't super useful in detecting a non-life threatening deficiency so I personally think it's best just to test with a supplement. If it does help, talk to your doctor about how much, how long, and with what you should take potassium (like I didn't because I'm a stupid rebel ).

Hope you feel better soon!

Anonymoose

[Jax37000]

Thanks everyone for your advice and suggestions. I eat really healthy (a clean eating vegetarian that gets a ton of protein and regularly has my iron levels checked- and never have been even slightly low in the 10+ years of going veggetarian!) I workout regularly (runner/cyclist/boxer) and because of all
the weird stuff in my fam, get a full workup every year as a precaution of vitamin/minerals, cbc, heart, etc..So this being my third flare-up of whatever in 4 years, is FRUSTRATING. Today I went to the eye doctor as my left eye has been bothering me for about
a
month. The opthamologist said my nerves looked good but the way the letters were appearing and disappearing like a white cloud only in my left eye made her say "I know this sounds weird.. but do you have anything else neurological going on?" I told her the general info and that I am getting an EEG and updated
MRI tomorrow but thought maybe it was "just finally
time to get glasses"... (I'm 29 and am the only
one in my family and extended family that never had to get glasses.) and she said "Yes.. ok, phew.. because this screams neurological to me and I didn't want to worry you, like maybe there is something going on near your occipital lobe.."

So tomorrow is the EEG and MRI.. hopefully it will at least rule more things out and help steer me back on track to answers.... I'm frustrated that I will have to
drop out of the marathon this year (what was to be my 4th full marathon) because I can't even run 20Minutes right now without feeling overly fatigued and irritating pins/needles numbness. (this weekend was supposed to be my 18mile training run).... Arrrg!!!!

[lyndacarol]

I eat really healthy (a clean eating vegetarian that gets a ton of protein and regularly has my iron levels checked- and never have been even slightly low in the 10+ years of going veggetarian!) I workout regularly (runner/cyclist/boxer) and because of all
the weird stuff in my fam, get a full workup every year as a precaution of vitamin/minerals, cbc, heart, etc..So this being my third flare-up of whatever in 4 years, is FRUSTRATING. Today I went to the eye doctor as my left eye has been bothering me for about
a month. The opthamologist said my nerves looked good but the way the letters were appearing and disappearing like a white cloud only in my left eye made her say "I know this sounds weird.. but do you have anything else neurological going on?" I told her the general info and that I am getting an EEG and updated
MRI tomorrow but thought maybe it was "just finally
time to get glasses"... (I'm 29 and am the only
one in my family and extended family that never had to get glasses.) and she said "Yes.. ok, phew.. because this screams neurological to me and I didn't want to worry you, like maybe there is something going on near your occipital lobe.."

So tomorrow is the EEG and MRI.. hopefully it will at least rule more things out and help steer me back on track to answers.... I'm frustrated that I will have to
drop out of the marathon this year (what was to be my 4th full marathon) because I can't even run 20Minutes right now without feeling overly fatigued and irritating pins/needles numbness.

Although you say your B12 level is tested annually and is "normal," your 10-year vegetarian lifestyle puts you at risk for vitamin B12 deficiency. Dietary B12 is only available in animal-based foods, such as meat, poultry, fish, eggs, cheese – milk products.

The neurological symptoms of B12 deficiency precede the signs in blood tests. All of your symptoms, including the vision disturbances, are consistent with B12 deficiency.

I encourage you to watch this 52-minute documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); 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).

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"


You have said that autoimmune diseases run in your family; please note the on-screen statement (@24:10) "B12 deficiency can run in families."

A thorough, initial B12 investigation will include 4 tests: #1 a serum B12 test, #2 RBC folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test. If you have your results (or can obtain them from your doctor's office), you can compare them to the recommendations of Pacholok and Stuart.

From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.:

Costs (approximate) of commonly used blood tests for B12 deficiency (usually covered by insurance):

Serum B12 (outdated test)… $50
HoloTc (newer, more reliable)… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150

The serum B12 test reference range for "acceptable" or "normal" in the US usually defines blood levels lower than 200 pg/mL as a deficiency. There is controversy among B12 experts that this is set too low. In Japan and some European countries any test results lower than 500-550 pg/mL is considered a deficiency and treated as such. The serum B12 test alone is not adequate to uncover a deficiency.

In my opinion (I have no medical background), you want to be sure you have no B12 deficiency (which is easily treated and can usually reverse symptoms, if the condition is caught early).