How can something that's ruining my life not have a name???

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Postby ToniH » Wed May 11, 2011 7:55 am

Thanks for sharing that, I had no idea. I usually take the sublingual B12 around 11 or so, because I'm a late sleeper. That's handy info!

jimmylegs wrote:hiya, k i'll check back for an update. there are lots of things that could be out of whack contributing to low energy so keep up the b12 but it's not the be all and end all. also FYI by TIMS anecdotal xp, backed up by research on b12 and circadian rhythms, too much b12 in the morning will screw up your night's sleep.
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Postby ToniH » Wed May 11, 2011 7:59 am

I agree. Sometimes it seems like the only way to get a diagnosis is through autopsy, and what good is that gonna do me?

I think I'll switch to an internist at UAB. It's the best hospital system in our area and it's a great medical school. That way if I need to be sent to a specialist to have something evaluated, they're all in one network. And if they get tired of me they can ship me off to the Mayo clinic :)

The positive thing is that I had a headache hit me last night, and I vomited most of the night and morning... which got me out of my oral surgery scheduled for today! Nobody wants to put you under anesthesia when you're so dehydrated... yay for silver linings!

rainer wrote:There are a hundred diagnosis you can chase. Unfortunately neurology is very much in the stone age compared to other fields of medicine. Especially frustrating is that which they cannot diagnose, they diagnose as nothing. So it follows that if your nothing gets worse it is still nothing, kind of like multiplying by zero. Focus on one or two symptoms and find a doctor to objectively track them.
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Postby Talisker » Wed May 11, 2011 12:20 pm

Hi, you said that you had Liver Function Tests 10/29/2010. Did that include measuring bilirubin levels and if so were they normal.
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Postby ToniH » Wed May 11, 2011 3:11 pm

Ok, got my copies of my many tests here...

On 10/29/2010, my results for the hepatic function panel were as follows (with normal range in parenthesis):

Protein, total: 7.5 (6.2-8.3)
Albumin: 4.2 (3.6-5.1)
Globulin: 3.3 (2.2-3.9)
Albumin/Globulin ratio: 1.3 (1.0-2.1)
Bilirubin, total: 0.3 (0.2-1.2)
Bilirubin, direct: 0.1 (< or = 0.2)
Bilirubin, indirect: 0.2 (0.2-1.2)
Alkaline phosphatase: 61 (33-115)
AST: 16 (10-30)
ALT: 16 (6-40)
Iron, total: 31 LOW (40-175)
Ferritin: 17 (10-154)

I'm also included my CBC general results from that same visit 10/29/2010
I think the normal range varies depending on the lab and how old the information is that the doctor is going by, so I won't give normal ranges, but I'll notate what was marked high or low.

WBC: 9.1
LY: 38
MO: 5.3
GR: 56.7
LY#: 3.5 HIGH
MO#: 0.5
GR#: 5.2
RBC: 4.74
Hgb: 12.4
Hct: 38.4
MCV: 81
MCH: 26.2 LOW
MCHC: 32.4 LOW
RDW: 15.4 HIGH
Plt: 327
MPV: 7.0 LOW



Talisker wrote:Hi, you said that you had Liver Function Tests 10/29/2010. Did that include measuring bilirubin levels and if so were they normal.
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Postby ToniH » Wed May 11, 2011 3:41 pm

For the sake of comparison, I'm going to include labwork from two previous dates in addition to the info I posted above for 10/29/2010.

8/11/2010
I went to the doctor for another bout of flu-like symptoms (muscle fatigue and weakness, dizziness, listless, my whole body sort of ached, but no upset stomach or diarrhea). Because nothing in my bloodwork indicated anything bacterial or viral, I was told it was a virus. This was also around the time that I went in for those symptoms and was told I probably had a strain of the swine-flu that was not showing up on tests. Go figure. My doctor, bless his heart, I'm assuming he thought that because whatever I had never seemed to be really treated... because it came back every other month, it seemed like something more than a bug. I don't know. Anyway, here's my CBC for that day.

WBC: 10
LY: 34.9
MO: 8.2
GR: 56.9
LY#: 3.5 HIGH
MO#: 0.8 HIGH
GR#: 5.7
RBC: 4.63
Hgb: 12.4
Hct: 38.2
MCV: 82.5
MCH: 26.7 LOW
MCHC: 32.4 LOW
RDW: 15.7 HIGH
Plt: 230
MPV: 6.6

10/19/2010
This was the visit where I showed up with that god-awful rash everywhere, as it had spread. I had ended a 10-day round of Prednisone three days prior to this visit. Of course, I was given another round of Prednisone in November because it didn't seem to be going away. Here is my CBC and my Renal Function Panel .

CBC
WBC: 15.8 HIGH
LY: 18.7 LOW
MO: 2.6
GR: 78.7 HIGH
LY#: 3.0
MO#: 0.4
GR#: 12.4 HIGH
RBC: 5.11
Hgb: 13.5
Hct: 41.6
MCV: 81.5
MCH: 26.5 LOW
MCHC: 32.5 LOW
RDW: 15.1 HIGH
Plt: 363
MPV: 7.2 LOW

Renal Function Panel w/EGFR
Glucose: 93
Urea nitrogen: 10
Creatinine: 0.63
Bun/Creatinine ratio within normal limits
Sodium: 141
Potassium: 5.0
Chloride: 103
Carbon Dioxide: 25
Calcium: 10.4 HIGH
Phosphate (as Phosphorus): 5.0 HIGH
Albumin: 4.5
TSH, 3rd generation: 0.41
Vitamin B12: 403
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Postby ToniH » Wed May 11, 2011 3:49 pm

Not sure if it's helpful, but at least it's an accurate time line of when I went to my various doctors and what conditions they reported. From my insurance company history:

Ringing in the Ears 3/17/2011
Dizziness and giddiness symptoms 2/28/2011
Skin sensation disturbance 12/2/2010
Brain Diseases, Metabolic 11/17/2010
Leukocytosis 10/29/2010
Eczema or Contact Dermatitis 10/29/2010
Iron Deficiency Anemia Caused by Chronic Blood Loss 10/29/2010
Skin Disorder due to Blood Vessel Changes 10/21/2010
Fatigue and Malaise 10/19/2010
Abnormal Involuntary Movement 10/19/2010
Disorder of Speech 10/19/2010
Skin Pigment Abnormality 10/7/2010
Skin Tumor 9/1/2010
Acne 9/1/2010
Benign Tumor of Skin of Trunk 9/1/2010
Neck Pain 4/9/2010
Keratoconjunctivitis sicca 2/26/2010
Chronic Conjunctivitis 2/26/2010
Difficulty Swallowing 10/2/2009
Dysphonia 10/2/2009
Virus Infection 9/15/2009
Hip Joint Disorder 3/2/2009
Astigmatism 9/12/2008
Conjunctivitis 9/12/2008
Nearsightedness (Myopia) 9/12/2008
Anal or rectal pain 9/3/2008
Right Lower Quadrant Abdominal Pain 8/13/2008
Enlarged Liver 8/13/2008
Anal and Rectal Bleeding 7/29/2008
Benign Colon Tumor 7/29/2008
Left Upper Quadrant Abdominal Pain 7/29/2008
Migraine without aura, without mention of intractable migraine without 7/26/2007
Headache 7/26/2007

Ah, yes the lovely topic of rectal bleeding. Basically, I was free-bleeding from my bum. I had been experiencing lower abdominal pain for quite some time. They did colonoscopies and sent cameras down my stomach and did ultrasounds and whatnot, measuring how far my gallbladder was squirting some stuff. They found a few hemmhoroids, but nothing that was causing the lower abdominal pain. Mystery to this day. It comes and goes, but much less frequently than everything else. I doubt it's related, but what the hell do I know? Anyway, this is just the history from my current insurance policy, since I got married. The earlier years of my migraines and nerve studies and hand problems were on my parents policy.
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Postby ToniH » Wed May 11, 2011 3:59 pm

jimmylegs wrote:hi TH welcome to TIMS :)

i am just going to jump right in - re: "I've had all vitamin levels checked, everything was OK"

can you advise what you mean by 'all' and what the results were specifically, with units?


also, can you PM or post results for these:

Vitamin B12 Blood Test 11/3/2010
Folic Acid Level 11/3/2010
Iron Level 10/29/2010
Ferritin Blood Level, Iron Test 10/29/2010
Complete Blood Count with Differential 10/29/2010

let me know :)

jimmylegs


I posted the results to everything that I have at the moment. The other blood tests (11/3/2010) were from my neurologist, and I don't have copies of them yet.
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Postby bartman » Wed May 11, 2011 5:21 pm

Toni,
I keep reading your symptoms, and obviously you are really sick. The title of this post is How can someone be ruining your life and no one knows what it is? I guess I'm wondering why you ended up here on an MS Forum. I had a relative misdiagnosed for 13 years and just yesterday after 2 years and 3 months of antibiotics we got our first positive bartonella henselea test result back as well as 2 positive babesia microti from 2 different labs. THIS IS HAPPENING ALOT! Let me assure you that if you want MS go to enough MS doctors and they will give it to you. Surely, there is a doc waiting to prescribe Rebif ready to go, and I can promise you 13 years of Avonex and steroids only made things worse, much worse. If you were my sister I would be shoving the antibiotics down your throat at high doses until you were better. Your diagnosis is a No-Brainer, you have lyme and coinfections like millions of others being misdiagnosed daily. I'm trying to help you. I'm just a stranger but just listen to me in due time you will get it. Everyone else who is reading this, Lyme disease and Co-infections are an epidemic and there are no reliable tests to confirm results. It is the biggest controversy in medicine. I am meeting a new person every single day that has been misdiagnosed with MS when it was Lyme. It's no joke. CPn Help.org
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Postby jimmylegs » Wed May 11, 2011 5:32 pm

cool! hey do you have the units for the b12 result by chance?

i was looking for an older resource but stumbled on this instead and it's much better. excerpt:

http://bestpractice.bmj.com/best-practi ... -step.html

Initial diagnostic testing
Serum vitamin B12 remains a useful initial diagnostic test for vitamin B12 deficiency due to its widespread availability and familiarity with the test. However, caution must to used when interpreting the values, as there are no well-defined cut-offs for deficiency. [25]

Generally, serum vitamin B12 can be broken down into 3 values:

Likely vitamin B12 deficiency: <148 picomols/L (<200 picograms/mL)

Possible vitamin B12 deficiency: 148 to 258 picomols/L (201 to 350 picograms/mL)

Unlikely vitamin B12 deficiency: >258 picomols/L (>350 picograms/mL).

An FBC with peripheral smear is useful to determine whether there is evidence of macrocytosis and frank anaemia, leukopenia, or thrombocytopenia. This suggests a more severe and prolonged vitamin B12 deficiency. However, a normal MCV, haemoglobin, and haematocrit are not useful to rule out tissue vitamin B12 deficiency, as many patients with vitamin B12 deficiency may have normal haematological parameters.

A peripheral smear may show the classic hypersegmented polymorphonucleated cells and megalocytes found in severe vitamin B12 deficiency with associated macrocytic anaemia, but is not sensitive to early vitamin B12 deficiency.

Serum folate level measurements were previously recommended, as low serum folate may falsely lower serum vitamin B12 levels. [26] However, in the era of folic acid fortification, concomitant folate deficiency is rare. In parts of the world where nutritional deficiencies are common, testing for concomitant folic acid deficiency and treatment can help clarify whether true vitamin B12 deficiency co-exists.

Clinical assessment of deficiency severity
The severity of the deficiency can be graded clinically as follows:

Mild to moderate neurological manifestations: dysaethesia/paraesthesias, polyneuropathy and depression

Mild to moderate haematological manifestations: usually asymptomatic with normal haematocrit and high normal to mildly elevated MCV.

Severe neurological manifestations: subacute combined spinal degeneration, dementia, or cognitive impairment. Subacute combined spinal degeneration is progressive neurologic degeneration of the posterior and lateral columns of the spinal cord. Patients present with ataxia, decreased vibration sense, muscle weakness, and hyporeflexia.

Severe haematological manifestations: pancytopenia and marked symptomatic anaemia.
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby lyndacarol » Wed May 11, 2011 5:59 pm

ToniH – You have certainly had a gamut of symptoms! Bartman has made a suggestion of Lyme disease; that is certainly one thing you can check out with your physician.

You have listed test results; cholesterol? On 10/19/10 your glucose level was 93 – I assume that was a fasting test (seems high for fasting). Insulin is not routinely tested, as is glucose; I always suggest that people with MS request a "fasting serum insulin test" (maybe that is one to do in your next blood work) – results higher than 7 UU/ML are elevated. My insulin levels have always been elevated when tested; elevated insulin levels go along with Metabolic Syndrome, which I suspect is involved in MS.

What are your blood pressure numbers?

Are you underweight, average, or overweight?

Have you ever discussed Metabolic Syndrome with your physician?

Your symptoms through the years may have had many different root problems – for instance, anal bleeding can result from anal fissures caused by hard stool material passing through tight, spasming sphincter muscles.
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Postby ToniH » Wed May 11, 2011 6:05 pm

Actually, that's not the title of the post. I ended up on an MS forum because all of my symptoms with normal bloodwork, along with the on/off periods, matched MS the best. I thought I had already explained why Lyme was less likely. Clearly, I don't "want" MS. Nobody does. But I do want a diagnosis so I can get treatment before I can no longer function. Look, I'm aware that Lyme can appear to be MS-like. I get that. But from my experience, getting an MS diagnosis isn't as easy and brainless as you make it out to be. From what I've read and researched, no matter how textbook my symptoms I can't get a diagnosis without a certain number of lesions. I'm sure it seems silly to you that I have a neurologist who told me my MRI was clear and I'm still questioning. For some reason, you want to rail against the big pharma-conspiracy in modern medicine but you fail to entertain the idea that my MRI was wrong. It's more likely that my MRI (which was not done following MS protocol and was noticeably affected by my braces) was wrong than it is likely that you are correct, at least in my case. I have already stated that my primary care doc was open to the possibility of it being Lyme... after all, I live in the south. But he's exhausted those avenues. I don't know what kind of super top-secret lab it is that doling out whatever results you're talking about to your family members, but I've been to MULTIPLE doctors across MULTIPLE fields of expertise and had MULTIPLE samples sent to MULTIPLE labs. And believe me, I am open to anybody's opinion or story, because that's why I'm hear, but you're started to sound like the chicken little of the Lyme/Bartonella epidemic.

How can you speak so ill of doctors freely prescribing random treatments and then suggest that I shove a bunch of antiobiotics down my throat? If anything, I thought it was the overuse of antiobiotics that helped create so many strains of diseases that are difficult to diagnose these days.

Nevertheless, while I don't share your opinion, I appreciate that you took the time to type it. Thank you.

bartman wrote:Toni,
I keep reading your symptoms, and obviously you are really sick. The title of this post is How can someone be ruining your life and no one knows what it is? I guess I'm wondering why you ended up here on an MS Forum. I had a relative misdiagnosed for 13 years and just yesterday after 2 years and 3 months of antibiotics we got our first positive bartonella henselea test result back as well as 2 positive babesia microti from 2 different labs. THIS IS HAPPENING ALOT! Let me assure you that if you want MS go to enough MS doctors and they will give it to you. Surely, there is a doc waiting to prescribe Rebif ready to go, and I can promise you 13 years of Avonex and steroids only made things worse, much worse. If you were my sister I would be shoving the antibiotics down your throat at high doses until you were better. Your diagnosis is a No-Brainer, you have lyme and coinfections like millions of others being misdiagnosed daily. I'm trying to help you. I'm just a stranger but just listen to me in due time you will get it. Everyone else who is reading this, Lyme disease and Co-infections are an epidemic and there are no reliable tests to confirm results. It is the biggest controversy in medicine. I am meeting a new person every single day that has been misdiagnosed with MS when it was Lyme. It's no joke. CPn Help
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Postby ToniH » Wed May 11, 2011 6:18 pm

Ah, tell me about it! On 10/19, the glucose was listed as normal at 93, and it says "fasting reference interval" of 65-99 mg/dL

I have no problems with cholesterol. Oddly enough, I'm almost overly healthy considering I exercise only sporadically. I'm 5'9" and weigh 200. I lost a good deal of weight after they started me on Adderall. One of the only good things that came out of it... I've kept it off since.

My blood pressure fluctuates from 92/64 to 106/74... the highest it's been in the past month is 116/74... my pulse rate is generally in the 90s to 110s. I check my BP often, because sometimes during my spells it seems like it should be higher. I mean, I'll feel dizzy and hot and clammy and red-faced, and it's normal. I made sure to buy one of the good home monitors that triple checks for accuracy, and it matches up with my doctor's office readings. At one point they checked to see how low my BP was dropping upon standing from a laying position, but it was only seven points, which is considering within the normal range.

No, my physicians have never discussed metabolic syndrome with me. My primary care doctor sent me to have my thyroid tested. As far as my neurologist, he has treated me like I'm making everything up--though he sent me to have the MRI done with the diagnosis of metabolic encephalopathy, or metabolic brain disease. From what I can tell, my liver functions came back okay... I'm not sure why he would think that unless he was just guessing.

The gastro doc thought the bleeding might be from the hemmhoroids... he said they were pretty severe. I never felt any pain during bowel movements, gross as that is to discuss. But I just left them alone. I've heard the horror stories about having them removed... no, thank you. And the bleeding, though it does come and go, is few and far between. It was the abdominal pain with no cause that bothered me the most.

lyndacarol wrote:ToniH – You have certainly had a gamut of symptoms! Bartman has made a suggestion of Lyme disease; that is certainly one thing you can check out with your physician.

You have listed test results; cholesterol? On 10/19/10 your glucose level was 93 – I assume that was a fasting test (seems high for fasting). Insulin is not routinely tested, as is glucose; I always suggest that people with MS request a "fasting serum insulin test" (maybe that is one to do in your next blood work) – results higher than 7 UU/ML are elevated. My insulin levels have always been elevated when tested; elevated insulin levels go along with Metabolic Syndrome, which I suspect is involved in MS.

What are your blood pressure numbers?

Are you underweight, average, or overweight?

Have you ever discussed Metabolic Syndrome with your physician?

Your symptoms through the years may have had many different root problems – for instance, anal bleeding can result from anal fissures caused by hard stool material passing through tight, spasming sphincter muscles.
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Postby ToniH » Wed May 11, 2011 6:23 pm

The B12 is listed as 403, with the reference range being 200-1100pg/mL.

I'm not sure if that answers your questions, but that's all I've got on this paper :)

jimmylegs wrote:cool! hey do you have the units for the b12 result by chance?

i was looking for an older resource but stumbled on this instead and it's much better. excerpt:

http://bestpractice.bmj.com/best-practi ... -step.html

Initial diagnostic testing
Serum vitamin B12 remains a useful initial diagnostic test for vitamin B12 deficiency due to its widespread availability and familiarity with the test. However, caution must to used when interpreting the values, as there are no well-defined cut-offs for deficiency. [25]

Generally, serum vitamin B12 can be broken down into 3 values:

Likely vitamin B12 deficiency: <148 picomols/L (<200 picograms/mL)

Possible vitamin B12 deficiency: 148 to 258 picomols/L (201 to 350 picograms/mL)

Unlikely vitamin B12 deficiency: >258 picomols/L (>350 picograms/mL).

An FBC with peripheral smear is useful to determine whether there is evidence of macrocytosis and frank anaemia, leukopenia, or thrombocytopenia. This suggests a more severe and prolonged vitamin B12 deficiency. However, a normal MCV, haemoglobin, and haematocrit are not useful to rule out tissue vitamin B12 deficiency, as many patients with vitamin B12 deficiency may have normal haematological parameters.

A peripheral smear may show the classic hypersegmented polymorphonucleated cells and megalocytes found in severe vitamin B12 deficiency with associated macrocytic anaemia, but is not sensitive to early vitamin B12 deficiency.

Serum folate level measurements were previously recommended, as low serum folate may falsely lower serum vitamin B12 levels. [26] However, in the era of folic acid fortification, concomitant folate deficiency is rare. In parts of the world where nutritional deficiencies are common, testing for concomitant folic acid deficiency and treatment can help clarify whether true vitamin B12 deficiency co-exists.

Clinical assessment of deficiency severity
The severity of the deficiency can be graded clinically as follows:

Mild to moderate neurological manifestations: dysaethesia/paraesthesias, polyneuropathy and depression

Mild to moderate haematological manifestations: usually asymptomatic with normal haematocrit and high normal to mildly elevated MCV.

Severe neurological manifestations: subacute combined spinal degeneration, dementia, or cognitive impairment. Subacute combined spinal degeneration is progressive neurologic degeneration of the posterior and lateral columns of the spinal cord. Patients present with ataxia, decreased vibration sense, muscle weakness, and hyporeflexia.

Severe haematological manifestations: pancytopenia and marked symptomatic anaemia.
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Postby jimmylegs » Wed May 11, 2011 8:11 pm

heya! perfect:
Unlikely vitamin B12 deficiency: >258 picomols/L (>350 picograms/mL).

you're at 403 and working in pg/mL, so it would seem you are 'unlikely' to have vitamin b12 deficiency.

i'd have to dig amongst sources to be sure that my personal ideal minimum of 500 is in pg/mL (in which case you have a ways to go) or pmol/L (in which case you'd be upwards of 540, therefore okay!)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby ToniH » Wed May 11, 2011 8:15 pm

jimmylegs wrote:heya! perfect:
Unlikely vitamin B12 deficiency: >258 picomols/L (>350 picograms/mL).

you're at 403 and working in pg/mL, so it would seem you are 'unlikely' to have vitamin b12 deficiency.

i'd have to dig amongst sources to be sure that my personal ideal minimum of 500 is in pg/mL (in which case you have a ways to go) or pmol/L (in which case you'd be upwards of 540, therefore okay!)


Either way, I've started myself on sublingual B12 drops. I've been doing it for a little over a week, and it's a high enough dose that it's suppose to provide 20,000% of the recommended daily value. But, I seem to remember that B12, like most vitamins and nutrients, isn't absorbed that easily, so I know I'm not likely getting that amount. But hey, I'd take half of that. I'm hoping it will boost my energy somewhat naturally, but given the high doses of adderall I was taking... if that didn't boost my energy, I'm not sure if anything will.
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