No one knows what's wrong with me.

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katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Thu Sep 10, 2020 7:22 am

Gotta love copy/paste. Bloodwork ordered below. LabCorp states they sent the results to my Dr., but they aren't showing up on the portal yet. The MRI done Tuesday was w/o contrast of head and neck.

RHEUMATOI D FACTOR- QUANT
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: BODY ACHES
TSH w/ FT4 ( 8 444 3)
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: FATIGUE
ESR
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: BODY ACHES
FREE TRI I DOTHYRONI NE ( T3) ( 84 481 )
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: FATIGUE
CBC w it h different ial ( 850 25)
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: NUMBNESS AND TINGLING
CRP
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: BODY ACHES
I ron w / TI BC (8 355 0)
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: FATIGUE
HEMOGLOBI N GLYCLATED ( HGB A1 C) ( 83 036)
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: NUMBNESS AND TINGLING
URI C ACI D BLOOD
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: BODY ACHES
FERRI TI N ( 827 28)
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: FATIGUE
CMP ( 8 005 3)
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: NUMBNESS AND TINGLING
ANA by I FA [ w ith reflex to mult iple t ests if + ]
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: BODY ACHES
Vitamin D ( 25- Hydroxy) ( 82 306 )
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: FATIGUE
ANA by I FA [ w ill give patt ern if + ]
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: BODY ACHES
Vitamin B12 (8 260 7)
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: FATIGUE
CCP ANTI BODY
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: BODY ACHES
LI PI D PANEL ( 8 006 1)
Ordered (Collected: 08/ 19/ 2020)
Diagnosis: FATIGUE

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Thu Sep 10, 2020 8:17 am

awesome! ok so rheumatoid, thyroid, cbc, crp, iron/tibc, hemoglobin, uric acid, hemoglobin, vit d3, vit b12, lipid panel plus a couple others.

great start! there will likely be some useful action items from those results.

if possible at a future date, would be great to see serum zinc and serum magnesium on the list.

both zinc and magnesium are likely to be affected by chronic stress and/or chronic antinutrient intake

lower zinc and mag levels can affect one or more of crp, iron, uric acid and vit d3 status.

we can definitely offer non-pro patient insight on some of the results if you wish, when the numbers are in.
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

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katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Thu Sep 10, 2020 8:38 am

Thank you! I will be sure to send as soon as they get them on the patient portal. These are all the same tests they always run and they are always "normal." Whatever is going on with my body this time is definitely not normal, so if bloodwork is ok, then something has to show up on the MRI. I am so nauseated and dizzy today also among everything else. Just blech!

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Re: No one knows what's wrong with me.

Post by jimmylegs » Thu Sep 10, 2020 12:01 pm

great, we'll look forward to updates! :) if it's any comfort, normal is just stats normal.

ie bell curve. ie everything from gump to einstein. ie deceptively reassuring on the surface!

the good news: action items can almost always be found, lurking in so-called 'normal' results :)
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

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Re: No one knows what's wrong with me.

Post by katybarthedoor » Thu Sep 10, 2020 6:41 pm

Below is the results. They haven't been reviewed by the dr. yet. I expected the cholesterol to be high, it always is. Looks like the most concerning would be the ferritin, serum which is over twice as high as it should be, but it still doesn't explain all my symptoms. Hypothyroidism is out, so I am still betting on MS. It didn't copy/paste like I wanted it to, but I notated what came out bad.

RHEUMATOI D FACTOR- QUANTFinal, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: BODY ACHESNote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227RA

Latex Turbid.12 .1 I U/mL (Normal Range: 0.0-13.9 I U/mL) Result Note: Performed by: TAResult Annot ation:

TSH w/ FT4 ( 8 444 3)Final, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: FATIGUENote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227K

TSH 1.6 20 uI U/mL (Normal Range: 0.450-4.500 uI U/mL) Result Note: Performed by: TAResult Annot ation:

T4,Free(Direct) 0.99 ng/ dL (Normal Range: 0.82-1.77 ng/ dL) Result Note: Performed by: TAResult Annot ation: ESRFinal, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: BODY ACHESNote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

Sedimentation Rate-Westergren38 m m/ hr (Normal Range: 0-40 mm/ hr) Result Note: Performed by:TAResult Annot ation:

FREE TRI I DOTHYRONI NE ( T3) ( 84 481 )Final, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: FATIGUENote: PATIENT WAS FASTING PERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

Triiodothyronine (T3), Free2.8 pg/ mL (Normal Range: 2.0-4.4 pg/ mL) Result Note: Performed by: TAResult Annot ation:

CRPFinal, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: BODY ACHESNote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

C-Reactive Protein, Quant 3 mg/ L (Normal Range: 0-10 mg/ L)
Result Note: Performed by: TAResult Annot ation:

Iron w / TIBC (8 355 0)Final, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: FATIGUENote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

Iron Bind.Cap.(TIBC) 278 ug/ dL (Normal Range: 250-450 ug/ dL) Result Note: Performed by: TAResult Annot ation:

UIBC 209 ug/ dL (Normal Range: 131-425 ug/ dL) Result Note: Performed by: TAResult Annot ation:

Iron 69 ug/ dL (Normal Range: 27-159 ug/ dL) Result Note: Performed by: TAResult Annot ation:

Iron Saturation 25 % (Normal Range: 15-55 % ) Result Note: Performed by: TAResult Annot ation:

URIC ACID BLOOD Final, Not Reviewed (Collected: 09/ 04/ 2020) Diagnosis: BODY ACHESNote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

Uric Acid 6.1 mg/ dL (Normal Range: 2.5-7.1 mg/ dL) Result Note: Performed by: TA
Therapeutic target for gout patients: <6.0 Result Annot ation:

FERRITIN ( 827 28)Final, Not Reviewed (Collected: 09/ 04/ 2020) Diagnosis: FATIGUENote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

Ferritin, Serum 313 ( abn) ng/mL (Normal Range: 15-150 ng/mL) Result Note: Performed by: TAResult Annot ation:

Vitamin D ( 25- Hydroxy) ( 82 306 )Final, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: FATIGUENote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227Kathleen B. Doughert yPatient # : 292775DOB: 02/ 05/ 1967 (53 years)Monday, Sept ember 7, 2020Page 3 / 6

Vitamin D, 25-Hydroxy 45 .8 ng/ mL (Normal Range: 30.0-100.0 ng/ mL)
Result Note: Performed by:TAVitamin D deficiency has been defined by the Institute ofMedicine and an Endocrine Society practice guideline as alevel of serum 25-OH vitamin D less than 20 ng/mL (1,2).The Endocrine Society went on to further define vitamin Dinsufficiency as a level between 21 and 29 ng/mL (2).1. IOM (Institute of Medicine). 2010. Dietary reference intakes for calcium and D. Washington DC: The National Academies Press.2. Holick MF, Binkley NC, Bischoff-Ferrari HA, et al. Evaluation, treatment, and prevention of vitamin D deficiency: an Endocrine Society clinical practice guideline. JCEM. 2011 Jul; 96(7):1911-30.Result Annot ation: ANA by I FA [ w ith reflex to mult iple t ests if + ]Final, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: BODY ACHES, PAIN I N BACKNote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

ANA Direct Negative (Normal Range: Negative) Result Note: Performed by: TAResult Annot ation:

Vitamin B12 (8 260 7) Final, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: FATIGUENote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

Vitamin B12 1426 (abn) pg/mL (Normal Range: 232-1245 pg/ mL)
Result Note: Performed by: TAResult Annot ation: ANA by I FA [ w ill give patt ern if + ]Ordered (Collected: 08/ 31/ 2020)Diagnosis: BODY ACHES, PAIN I N BACK

CCP ANTIBODY Final, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: BODY ACHESNote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

CCP Antibodies IgG/IgA 4 units (Normal Range: 0-19 units) Result Note: Performed by: TA
Negative <20
Weak positive 20 -39
Moderate positive 40 -59
Strong positive >59Result Annot ation:

LIPID PANEL ( 8 006 1)Final, Not Reviewed (Collected: 09/ 04/ 2020)Diagnosis: FATIGUENote: PATIENT WAS FASTINGPERFORMED BY: TA LabCorp Tampa 5610 W LaSalle Street Tampa FL 336071770 8008775227

AST (SGOT)28 I U/L (Normal Range: 0-40 I U/L)
Result Note: Performed by: TAResult Annot ation:

Cholesterol,Total 258 ( abn) mg/ dL (Normal Range: 100-199 mg/ dL)
Result Note: Performed by: TAResult Annot ation:

Triglycerides 166 ( abn) mg/dL (Normal Range: 0-149 mg/dL)
Result Note: Performed by: TAResult Annot ation:
HDLCholesterol 51 mg/ dL (Normal Range: > 39 mg/ dL)
Result Note: Performed by: TAResult Annot ation:

VLDL CholesterolCal 31 mg/ dL (Normal Range: 5-40 mg/ dL)
Result Note: Performed by: TAResult Annot ation:

LDL Chol Calc(NIH) 176( abn) mg/ dL (Normal Range: 0-99 mg/ dL)
Result Note: Performed by: TAResult Annot ation:

LDL/ HDL Ratio 3.5 (abn) ratio (Normal Range: 0.0-3.2 ratio)
Result Note: Performed by: TA

LDL/HDLRatio
Men Women
1/2 Avg.Risk 1.0 1.5
Avg.Risk 3.6 3.2
2X Avg.Risk 6.2 5.0
3X Avg.Risk 8.0 6.1
Result Annot ation:

katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Thu Sep 10, 2020 6:55 pm

My B12 was higher than it should be also, so that could explain some of my symptoms, but not the eye problems or hearing loss. I am hoping the MRI will give more info. I only take the shot 1 time per month (B12) and take an over the counter sublingual B12. Maybe I should not take the sublingual anymore.

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NHE
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Re: No one knows what's wrong with me.

Post by NHE » Thu Sep 10, 2020 11:05 pm

Your triglycerides are high as are total cholesterol and LDL. A diet modification would help those numbers and probably your energy level as well.

I found the movie "Fat, Sick & Nearly Dead" by Joe Cross to be inspirational. Joe cures himself of the autoimmune disease urticaria by drinking green juice. He also loses lots of weight. You can watch the movie for free if you have Amazon Prime. If not, then you can likely get it from your local library.

https://www.amazon.com/Fat-Sick-Nearly- ... 0744PVLKQ/

If you're interested, then here are Joe Cross' juice recipes.

https://s.doctoroz.com/sites/default/fi ... leanse.pdf

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Fri Sep 11, 2020 5:08 am

ok here are some first thoughts:

RF is not in my wheelhouse

thyroid numbers in my very limited xp are going to be decidedly OUT of range if a prob.

UA looks high for anyone and especially high for an MS patient. compare 3.2 as an MS average seen in the literature.

your ferritin is high enough to safely add zinc, which may be low in the context of poor diet and especially so with alcohol use in the mix. it would be worth checking your serum zinc level to be sure it's needed, given that the UA is high.

d3 is decent but could go up to 50-60. it will probably be worth adding cofactors like mag and zinc, and watching for any effect before increasing d3 intake.

agree the b12 could come down. i suspect you would do fine with a quality sublingual.

CCP items are not in my wheelhouse

re cholesterol, you had said meat and potatoes - that looks like the ldl and the triglycerides respectively.
i have a friend who just halved excessive LDL by cutting down on eggs.
the triglycerides are next on that person's agenda, with starchy veg and fruit being overrepresented at present.
definitely needs more non starchy veg (like greens) in the mix.

hopefully you will be able to figure out some beneficial dietary changes. at a minimum in the short term, you could consider adding a few supplements to your regimen, to help address existing dietary insufficiency and alcohol-related depletion of key nutrients, especially those related to energy levels, pain and immune function.

b50 complex (many of the b-vits are depleted by alcohol)
quality multi
magnesium glycinate (mag is vulnerable to depletion by d3 and by alcohol)
high DHA omega 3 (fish oil) could be expected to help out the lipid profile
zinc (will help bring ferritin in line and is also depleted via alcohol use -not to mention smoking)

you may have read about various diet/nutrition regimens used to address MS. one older example, the klenner protocol, was very helpful in my case. after well over a decade of increasingly restrictive diet, culminating in my MSdx, this protocol loaded essential nutrients i'd been missing, notably including many of the B vitamins and an array of minerals including magnesium and zinc.

because i had been low on protein and fat, the high protein diet and infusion of fat soluble vitamin elements were other logical pieces of the puzzle for me. i was overwhelmed with info at the time, so did not pay enough attention to the mineral side, focusing instead on the vitamins. in hindsight i wish i'd paid more attention to the minerals, too.

although a protein deficit may not be in your personal mix, do let us know if you'd consider any of the 5 supplement items listed above and if so, we can get into more detail re dosage and timing.

i have a strong suspicion that magnesium will turn out to be a big contributor to current symptoms in your particular case. :D
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Fri Sep 11, 2020 10:00 am

Well, I am back to square one. The Dr's office just called and said my MRI was just fine. She is referring me to an ENT specialist for my hearing loss and they are going to do an ultrasound to make sure my liver is ok. No telling how long I will have to wait for each of these appointments and still have to deal with hearing loss, dizziness/vertigo, extreme fatigue/sleepiness. Not to mention the numbness I've had in all my limbs for 8 years, trouble walking, severe cramping, chronic back pain, finger tremors, hypnic jerks, etc. I could just cry. I thought I was finally going to get a diagnosis so I could be treated and feel like a human being again.

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Re: No one knows what's wrong with me.

Post by jimmylegs » Fri Sep 11, 2020 10:49 am

please take heart. although very frustrating, it can be seen as truly good news that your MRI was fine.

if you are interested in approaching your various symptoms from a nutrient-depletion perspective, there could be some very safe and straightforward next steps to take right now, with no immediate need of medical supervision if you choose to and have the means to act fast.

even without a single test, this afternoon you could pick up a good magnesium glycinate supplement, and see what a few hundred mgs per day might accomplish in the short term, as an easy and safe first step. some local options:
https://www.vitaminshoppe.com/search?se ... 0glycinate

in the states you can quite easily pursue private nutrient testing. you could order a bloodwork requisition or two this afternoon, start filling in some of the blanks in your current data, and fill in the time while you wait for specialist appointments and results to come around. say the word and i'll post some useful links.

going forward, referrals to other specialists are a great next step. checks on the liver are a very, very good idea.

since reading your earlier posts, i was very interested to find this article:

Nutrition in alcohol-related liver disease: Physiopathology and management (2020)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7304106/

some of the described alternatives to standard liver enzyme monitoring could be very appropriate.
please consider taking the time to read, and if you have any questions about the content i'll do my best to answer.

you are not at the mercy of the system! make the available options work for you :D :D :D we're here for ya
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Fri Sep 11, 2020 11:01 am

Thank you, Jimmy (and everyone else that has posted to help me). I have read everything that you have suggested with the exception of your last post and I will read that shortly. When all this started, I wasn't even drinking much and I even quit smoking since then (although I do still vape). I don't know if I should give up or do the lumbar puncture. I know my dr. just thinks I am a hypochondriac and crazy. *Sigh*

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Re: No one knows what's wrong with me.

Post by jimmylegs » Fri Sep 11, 2020 12:31 pm

just because the docs aren't necessarily trained to test for or interpret potentially key info, certainly should not be taken to mean you're a hypochondriac.

sadly, it can mean that your real life day-to--day experiences end up in the 'subclinical' round file. i would not recommend waiting for things to get bad enough to finally trigger a clinical red flag :S

quitting smoking was an excellent move. i really really hope you will continue to fight hard for optimal health! :D
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Re: No one knows what's wrong with me.

Post by jimmylegs » Fri Sep 11, 2020 3:07 pm

this page provides info on an array of potential causes for peripheral neuropathy, which could be linked to some of your symptoms.

for whatever it's worth, it is a fact that at least part of my own scenario is peripheral neuropathy and not central, even though everything was happening at once during the week i was diagnosed.

https://www.mayoclinic.org/diseases-con ... c-20352061

couldn't hurt to rule out (or where possible, address) the various potential contributing factors
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Re: No one knows what's wrong with me.

Post by Scott1 » Fri Sep 11, 2020 4:19 pm

Hi,

I cannot stress enough that a GP has very limited skills. They only have a superficial knowledge of neurology. To even think that you are imagining your symptoms is, unfortunately, all too common. It is also an outdated view. The World Health Organisation said as much in their 2016 standard for disease definition (called ICD-11). Doctors don't read that stuff but it is says believing patients imagine symptoms is "crap".
A neurologists role is work out what your symptoms represent, neurologically. Sometimes they need to do multiple tests and eliminate a range of possiblities. MS is only one.
You described enough things to justify seeing a neurologist but given the feedback your getting, I would change doctors and get a different referral network. Seeing a GP is about as useful as seeing a vet.
MS is notorious for being mistaken for something else. Maybe you don't have MS but something is going on. I would change doctors. The fact that your GP thinks she understands MRI's is a giant flag to me that says you are using the wrong network.
I hope you find some answers.
Regards,

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Re: No one knows what's wrong with me.

Post by NHE » Fri Sep 11, 2020 9:24 pm

NHE wrote:
Thu Sep 10, 2020 11:05 pm
If you're interested, then here are Joe Cross' juice recipes.

https://s.doctoroz.com/sites/default/fi ... leanse.pdf
Rather than going for the "3 day reboot" as described, just try adding one of the juices to your daily routine. You could also try adding some fresh fruit every now and then. For example, I enjoy granny smith apples and I also find red grapes refreshing.

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