I have experienced this for three years what do you think it is ?

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I don't know whats worse being sick all your life. Or seeing countless of doctors only for them to send you to the ER without any results. My story begins at age six. I experienced nightly extreme pain in my legs which would cause me to scream until I got so tired and fell asleep. Nothing soothed it nothing helped. Doctors were sought out only to be told it was "growing pains" and everything would be okay as I grew more. It was the hope that was instilled in me that allowed me to believe it would lessen as I got older. But it only got worse. I continued going through the nightly leg pain that would last past the night and into days. It was inescapable. Along with that I was known as the "sick kid" in my family always sick with some kind of extreme GI issues causing excruciating pain in my abdomen or vomiting. My mother took me to a pediatrician and the doctor tested me for celiac which I was negative among other things including thyroid. Then in 2010 I was diagnosed with Hashimoto's Toxcosis Disease that at the time was in early stages and they denied treatment until it developed into Hypo thyroid. As I got older my symptoms became more debilitating. Sweating and my body is ice cold. Feeling sick all the time. My child hood was stripped from me because of my illnesses. As that continued by the age of 14 I became tachycardic. Where doctors would send me to the ER suggesting maybe a heart attack or something of heart disease. But the episode subsided once I arrived at the hospital leaving doctors puzzled.I got older and tried to involve myself in sports. We would play but something happened where I'd fall allot on my knees and my brain didn't make sense of the instructions that were needed to be completed by me. I would trip and fall allot causing injuries to my knees. As college started I thought maybe just maybe I would have a relief. But it was only the time that I would have a rude awakening that my ambitious nature would slowly lessen each incident that had occurred where my body didn't allow me to walk the halls anymore because I was too tired, and sending me in sleeping spells for hours and hours only to wake and not feel rested at all. Getting hot and sweating only to find that if I laid down on the floor I would feel cooler. Finally it got to a point I had to drop classes. Luckily I found job that allowed me to work from home. Then maybe a year into that I was surprised with new symptoms of wakening with blacked out vision for 10 minutes then once that cleared double vision. Then finally walking down the stairs was a possibility but only to be visited by a cooling sensation in my legs and falling afterwards because of the lack of stability my legs provided as one leg went numb. This was a every day occurrence occurring at 9am in the morning. Lasting no more then a few minutes. It was tolerable. The extreme fatigue was not. It would last for days along with infections. I couldn't escape this illness as it swallowed my youth whole. A year after that I was working and had this incredible chest pain where I thought I was having a heart attack I pressed my chest so tight applying pressure. The pain. It hurt with every breath I took. The next day I called my physican, letting them know of the incident and they automatically recommended me to go to the ER. So I went they said I tested positive for thyroid storm and said it was dangerous. But they sent me home because I felt fine. SO then maybe a few days later I was working again. Got ready to go to lunch as I was walking up the stairs the first stair it was like my brain said move your leg and my leg went limp and I fell grabbing the rail only to plant myself on the stairs and not be able to move that leg for 30 minutes. Then after it subsided I told my mom and she said ok go to the urgent care. So we went. I failed my neuro exam and they wanted to send me to the ER again. I refused to go and instead I Went to my first neurologist. The neurologist ran EMG , AEEG had slowing of the brain intermittently in the delta and theta, since I had syncope and minor jerking / convulsions that happen rarely they thought maybe seizures. Those test were negative and the doctor relayed the news to tell me that he had no answers for me. My spirits were crushed. So on to the next we went and after examination the doctor found laxtivity  in my joints and said maybe I had EDS . Ehlers Danlos Syndrome. Test were performed such as a tilt table test and confirmed diagnosed a year ago of POTS. I was told to increase my diet of salt, increase fluid intake of 3 liters and then recumbent exercise. Sadly it only aggravated my symptoms. As I got older I grew sicker getting frequent infections, extreme fatigue. Then 2 months ago I had an infection that carried extreme feeling of cold. My place was 75 degrees and I was freezing. I was trapped in the Arctic. I tried hot shower and hot tea and nothing worked. Infact I couldn't feel the hot shower and notice my body turning red but my brain didn't register the temperature. I knew something was wrong. I started not being able to feel pain and temperature. But was given a small blessing for my heart and blood pressure remained normal. And fatigue was no longer there. Sadly the numbness increased and started affected different parts of my body. My entire right arm was gone for 30 minutes. Then it affected my two fingers in my right hand. And then my legs the numbness had started climbing from my toes. I carried on to a superior hospital Cleveland Clinic and the doctors tested me for neurogenerative diseases and rare cancers only to find no results. Along with autonomic testing to find no results. The pain was fixed by neurotin. However the numbness is now creating muscle weakness where its hard to move my legs and is only climbing up to my hips very episodic. I have gone to a massage before and had hot stone treatment and couldn’t feel it where the numbness attacked my limbs my legs and right arm I couldn’t feel the heat but I could feel it on my back. I worry that this could lead to paralysis that is why I am looking for answers quickly they did find out I was mildly copper deficient

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 

 

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10 Replies

  • Posted

    Hi! So sorry to hear you went through all of that and are still struggling. Where are you from? and were you outside a lot when u were a kid?
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    • Posted

      Yeah get tested for Lyme!! Many go misdiagnosed and suffer for a very long time. I struggle with a lot of your symptoms and I was bit by something when this all started. I have been struggling with my health every since and it's been really hard. Even tests for it are very inaccurate.

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    • Posted

      I am from OH. And I was an outdoors person and played sports but. I was never bit by a  tick 
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    • Posted

      doesn't matter. testing is highly inaccurate. Plus, ticks are not the only ones who carry lyme and it's co infections.

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    • Posted

      I was bit by a nymph. Size of a pin head. Never saw it must have scratched it off. Never had the bulleye rash either
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    • Posted

      You and me both. Never knew what hit me. Woke up to a bite on my leg and felt alittle weird but I brushed i off and so did ER. Since that day my health plummeted. 
      Report

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