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Possible Conditions or Tests that can be run?

Patient 22 year old Female
Born normal vaginal birth with a Strep B urinary Tract infection.

Developed symptoms throughout her life
Memory Loss / Brain Fog
Tachycardia
Purple feet/ blue feet
Numbness during activity
Feeling cold then seconds later sweating and hot
extreme muscle pain and joint pain
Get sick allot flu like symptoms
Low grade fever
Low blood pressure
Numbness starts in feet and goes up
Numbness after waking from sleep
Double vision / temporary blindness
Temporary worsening vision
Worsening muscle ability and muscle riggity / stiffness
Get infections allot sinus and uti kidney infections
Worsening coordination
Fatigue Extreme fatigue
Blood pooling in feet
inability to stand for prolong 15 min when symptomatic
- Normal labs and neurological testing such as EEG, AEEG, EMG, CT, MRI of brain and scan. Endocrine , Cardiology expect POTS diagnosis.
- Neurological issues occurred after infection
4 Responses
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Avatar universal
Red_Star is absolutely right that your symptoms are most likely caused by ME or Chronic Fatigue Syndrome. A couple years ago I started experiencing many of the same problems that you’re having. It’s likely though that many if not most cases of ME/CFS are caused by a couple of rarely diagnosed Vascular Compression Syndromes that most doctors have never heard of. The first one is called Nutcracker Syndrome (Renal Vein Compression). Google: Nutcracker Syndrome and Chronic Fatigue Syndrome together in the same search. Several articles and case studies have shown that severe compression of the Renal Vein can cause Severe Chronic Fatigue Syndrome.

Many people that have been diagnosed with Nutcracker Syndrome get diagnosed with a second similar condition called May-Thurner Syndrome (Iliac Vein Compression). It can cause many of the same symptoms as Nutcracker. I was recently diagnosed with this condition and it can actually cause Mild ME/CFS. So it’s possible that if you have both of these conditions occurring together, it could explain all of the symptoms that you’re experiencing. Some people develop fevers and flu like symptoms with these and some don’t. Severe compression of either of these veins  can cause large amounts of blood to get blocked at these Compression sites. Instead of blood flowing upwards to the lungs, heart and brain, the blood begins flowing back downwards and can pool in the pelvis and legs. This can cause Pelvic Congestion Syndrome in Women and Vericocele Veins in Men as well as painful heavy legs.

Do you live in Italy? There is a German doctor Prof Thomas Scholbach that talks extensively about these Compression Syndromes. He is considered by many to be the best doctor in the world at diagnosing and treating these conditions. You could also join a Nutcracker Syndrome and May-Thurner Syndrome groups on Facebook. The members in these groups can tell you what 99.99% of doctors don’t know. They can also give you some great ideas about how to possibly get diagnosed and treated for these poorly understood conditions.

Hope this might help! Feel free to ask any questions.
Helpful - 0
363281 tn?1643235611
Hello~I am sorry you are suffering with all these issues.

Have they tested you for diabetes, the reason I ask is due to the numbness in your feet and vision issues, also the fatigue issues.

Your symptoms also could point to either Fibromyalgia or Chronic Fatigue Syndrome. I believe an Epstein Barr blood test can help rule that out however.

Candida, which is a type of yeast infection can cause lots of the problems you are having, as can food or chemical allergies. I would ask your PCP for tests in these areas as well. In the meantime, try avoiding all sugars, alcohol, gluten and wheat. If you start to feel better, then these problems could be the culprit.

If you are not already doing to, I recommend taking a good, organic, high potency B complex vitamin along with the vitamins A, D, C and E, adding a good multi mineral is beneficial as well. All these will help to strengthen your immune system and hopefully help with the fatigue.

I hope you start feeling better soon. God bless you.
Helpful - 0
1530171 tn?1448129593
Please, could you post  the medical history chronologically? As much as possible.
Was her Strep B UTI diagnosed shortly after birth?
Any testing for deficiencies? Please state tests, test results and lab ref. values, if available
Same for hormonal panel.
"Normal" labs are meaningless or possibly dangerous , if tests are the wrong ones, flawed or results misinterpreted..
It could leave patients in perpetual medical limbo.

How about dietary habits, nutritional intake, including supplements, digestive and GI function, any meds, etc.

Best wishes,
Niko
Helpful - 0
1 Comments
8 weeks old - Diagnosed with Strep B was in hospital for 2 days given antibiotics it cleared

At age 6 - Extreme leg pain occurred
lasted till age 22 until given Neurotin for the neuropathic pain

Age 10-13 - Extreme GI issues , extreme fatigue , always tired, not very hungry , feeling sick, sweating but cold, and hot flashes , and minor headaches, and extreme PMS , was diagnosed with Thyroid Hashimoto's Toxosis

Age 14 - Patient became tachycardic , accompanied by feeling cold all the time and high heart rate , feeling like she was going to pass out, patient got out of shower one time and cooled off while brushing hair only to hit her head on tile and pass out

Age 17-18 - Played basketball , fell on knees allot had trouble with coordination, would trip and fall allot

Age 18- 19 - Was in college would get very sick, sleeping for hours and hours get fatigued , frequent infections UTI and upper respiratory infections and Sinus infections

Age 19 Numbness was noticed but wasn't very problematic

Age 20 - Patient developed a temporary black out in vision at 9am then a double vision for a few more minutes. Then walked down the stairs and when she stepped outside the light was very bright and patient started feeling a cooling sensation in her limbs upon standing. Patient started feeling tingling and automatically sat down only to find that she would not use her leg as it was hard to move

Age 21 - patient was working late at night exhibited extreme chest pain and trouble breathing thinking it was a heart attack patient went to ER next day only to find out it wasn't anything to worry about patient a few days later walked up to stairs after lunch, before touching the first step she moved her leg only to find it went limp and left her unbalanced. Patient held railing and sat there for 30 minutes until regained feeling

Age 22 - Patient exhibits numbness that ascends climbing as far up to the hips. Lasting anywhere from 3 minutes to 15 minutes. Patient explains she starts by not being able to wiggle her toes then the numbness ascends leaving her to find a place to sit down before her limbs go numb. Patient experienced a infection before this occurred. Only to find her heart rate had normalize and she was no longer tachycardic or have low blood pressure. Patient stated that she has had episodes where her right arm was completely numb after waking from sleep or her legs going completely numb. Or her two fingers.



Lab tests performed

1.) CT SINUS STEREO WO IVCON

Results : Deviated nasal septum. No evidence of sinusitis.


2.) B.PERTUSSIS IGG IMMUNOBLOT

Results :

B. pertussis, IgG Immunoblot PT100 - Equivocal  

pertussis, IgG Immunoblot PT -Positive  

pertussis, IgG Immunoblot FHA Positive

Ceruloplasmin Build Test
Ceruloplasmin 22 mg/dL

Zinc Build Test
Zinc 70 ug/dL

Copper Blood - 77 ug/dL

Bordetella pertussis, IgA 0.6 U/mL

Bordetella pertussis, IgG 1.4 U/mL



IMMUNODEFICIENCY CDC

CD3+ T Cell % 70%
CD3+ T Cell # 1464
CD4+CD3 T Cell % 43%
CD4+CD3 T Cell # 885 Cellular
CD4+CD3 T Cell % 26%
CD3+CD8 Cell # 536 Cells/UL
CD19+ B Cell 21%
CD19 + B Cell # 444
NK Cell % 8 %
NK Cell # 167 Cells/uL
CD4 / CD8 1.65

COMPLMNT DEF ASSAY
Complement Def Assay 161 Units

DIPHTHER/TETANUS AB
Diphtheria Ab 0.40 IU/mL
Tetanus Ab 1.07 IU/mL

RUBELLA IGG AB
Rubella IgG, Qual Positive
Rubella Antibody, IgG 1.59


RUBEOLA (MEASLES)IGG
Measles Antibody, IGG Qualitative Positive  

Measles Antibody, IgG 115.0 AU/mL

MUMPS IGG AB
Mumps IgG, Qual Positive  

Mumps Ab, IgG 259.0 AU/mL


PERIOD & VOLUME 24 hours
Urine Volume 24 hour 1419 mL

PERIOD & VOLUME 24 hours
Urine Volume 24 hour 1419 mL

PERIOD & VOLUME 24 hours
Urine Volume 24 hour 1419 mL



HIAA-5 QUANT 24H UR

5 HIAA, 24 Hr Urine 2.4 mg/24hrs


METANEPHRINES 24H UR

Metanephrine 128 ug/24 hr
Normetanephrine 108 ug/24 hr
Tot Metanephrine 236 ug/24 hr


SODIUM 24 HR URINE
Sodium, 24 hr Urine 105 mmol/24hr

N-METHYLHISTAMINE,UR
n-Methylhistamine, Urine mcg/g Cr 140

Creatinine Conc (MHISTA) 67 mg/dL

Collection Period (MHISTA) 24

RUBELLA IGG AB - Rubella, Quantitative 63.00 IU/mL

PNEUMOCOCCAL IGG ABS, 14 SEROTYPES

Pneu Serotype 1 1.79
Unit: ug/mL
Pneu Serotype 3 1.41
Unit: ug/mL
Pneu Serotype 4 0.69
Unit: ug/mL
Pneu Serotype 5 8.22
Unit: ug/mL
Pneu Serotype 6B 2.21
Unit: ug/mL
Pneu Serotype 7F 5.71
Unit: ug/mL
Pneu Serotype 8 1.42
Unit: ug/mL
Pneu Serotype 9N 1.03
Unit: ug/mL
Pneu Serotype 9V 3.95
Unit: ug/mL
Pneu Serotype 12F 1.39
Unit: ug/mL
Pneu Serotype 14 4.67
Unit: ug/mL
Pneu Serotype 18C 0.78
Unit: ug/mL
Pneu Serotype 19F 5.07
Unit: ug/mL
Pneu Serotype 23F 0.48
Unit: ug/mL


IGG SUBCLASSES+TOTAL
IgG Subclass 1 535.0 396.0-965.0 mg/dL
IgG Subclass 2 548.7 176.0-698.0 mg/dL
IgG Subclass 3 62.3 16.0-134.0 mg/dL
IgG Subclass 4 63.7 5.0-131.0 mg/dL
IgG 1240 717-1411 mg/dL


TRYPTASE BLOOD
Tryptase <1.0 <11.0 ug/L

IGE BLD
IgE 45.4 <114 kU/L

IGA BLD
IgA 287 mg/dL

IGG
IgG 1250 mg/dL

IGM
IgM 160 mg/dL


COMPLMNT DEF ASSAY
Assay 107 Units

PERTUSSIS AB IGG, ELISA REFLEX IB

B.pert IgG 0.6


CORTISOL BLD
Cortisol 4.8 ug/dL

HGB A1C
Hemoglobin A1C 5.0 %
Estimated Average Glucose 97 mg/d

VITAMIN B6/PYRIDOXIN
Vitamin B6, Plasma 39.8 nmol/L

VITAMIN B1/THIAMINE, WHOLE BLD
Vitamin B1, WB 115 nmol/L

COPPER BLOOD
Copper 70 ug/dL

CATECHOLAMINES FRACT
Epinephrine (PLCAT) 14 pg/mL
Norepinephrine 353 pg/mL
Dopamine <20 pg/mL

METANEPHRINES, FREE PLASMA
Metanephrine, Plasma 34 pg/mL
Normetanephrine, Free Plasma 55 pg/mL

EXERCISE STRESS WO IMAGING
Was terminated by leg numbness , but heart rate and blood pressure were appropriate

ANTI-CARDIOLIPIN AB
Cardiolipin Ab, IgG <9 GPL

Cardiolipin Ab, IgM <9 MPL

Cardiolipin Ab, IgA <9 APL

LEAD BLOOD - Details
Lead <1.2 ug/dL


MERCURY BLD
Mercury Blood <3 ug/L

LYME AB PANEL WBLOT

Lyme IgG Western Blot Negative  

Lyme IgG, Bands None

Lyme IgM Western Blot Negative  

Interpretation (Lyme Abs/WB) No evidence of antibodies to Borrelia burgdorferi.  

ANA BY IFA WITH REFLEX

ANA Negative  
Normal range : negative at <1:80 serum dilution.

GGT BLD(GAMMA GLUTAMYLTRANSFERASE

GGT 13 U/L


SED RATE
WSR 1 mm/hr

VITAMIN D 25 HYDROXY
Vitamin D 25 Hydroxy 16.4 ng/mL

VITAMIN B12 BLOOD
Vitamin B12 580 pg/mL


GLIADIN (DEAMIDATED) AB, IGG -

Gliadin Ab, IgG 4 Units


GLIADIN (DEAMIDATED) AB, IGA

Gliadin Ab, IgA 10 Units


ALGN Whey IgG Bld
Whey IgG 91.90 mcg/mL


ALGN WHEAT IGG
Wheat IgG 13.8 mcg/mL

ALGN CASEIN IGG
Casein IgG 18.6 mcg/mL

CELIAC COMPREHENSIVE PANEL
Negative

THYROID PEROXIDASE ANTIBODY BLOOD

Microsomal Antibody <1.0 IU/mL


THYROGLOBULIN AB
Thyroglobulin Ab 2.4 IU/mL

THY STIM IMMUNOGLOB
TSI 32 % Normal


REVERSE T3
Reverse T3 20.9 ng/dL


T4/THYROXINE BLOOD
T4 7.5 ug/dL


T3 BLD
T3 106 ng/dL

TSH BLD
TSH 0.574 uU/mL


COMP METABOLIC PANEL
Protein, Total 7.9 g/dL
Albumin 4.6 g/dL
Calcium 9.5 mg/dL
Bilirubin, Total 0.4 mg/dL
Alkaline Phosphatase 57 U/L
AST 17 U/L
Glucose 78 mg/dL

CBC + DIFF
WBC 7.94 k/uL
RBC 4.79 m/uL
Hemoglobin 13.9 g/dL
Hematocrit 43.2 %
MCV 90.2 fL
MCH 29.0 pG
MCHC 32.2 g/dL
RDW-CV 12.8 %
Platelet Count 309 k/uL
MPV 9.5 fL
Neut% 58.1 %
Abs Neut (ANC) 4.61 k/uL
Lymph% 31.4 %
Abs Lymph 2.49 k/uL
Mono% 8.9 %
Abs Mono 0.71 k/uL
Eosin% 1.0 %
Abs Eosin 0.08 k/uL
Baso% 0.6 %
Abs Baso 0.05 k/uL
Nucleated Reds 0.0 /100 WBC
Absolute nRBC <0.01 k/uL
Diff Type Auto Diff


Diet - Lots of salads, gluten free, wheat free fruits and veggies , salmon, more of a mediterranean diet

only meds is neurotin

Sorry for replying so late



1756321 tn?1547095325
ME/CFS. ME stands for myalgic encephalomyelitis (myalgic means muscle aches or pains and encephalomyelitis means inflammation of the brain and spinal cord). CFS stands for chronic fatigue syndrome.

ME/CFS can be triggered suddenly by a viral infection, toxic exposure, anaesthetic, immunisation, gastroenteritis or trauma.

Because there is no diagnostic test for ME/CFS, diagnosis is clinical and based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing.

Co-existing medical conditions include fibromyalgia, multiple chemical sensitivity, orthostatic intolerance, irritable bowel syndrome, interstitial cystitis, irritable bladder syndrome, raynaud's, thyroiditis, sicca syndrome, TMJ dysfunction, migrane, prolapsed mitral valve.
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363281 tn?1643235611
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