anyone else like me

[em1zzle]

Hi,

I'm just wanting to know if there are others like me out there and if my symptoms and other illnesses could somehow be linked to ms.
a little introduction of myself; I'm a 23 yr old female. my medical history is as follows:

2005- dx with endometriosis and interstitial cystitis
2011- dx with gastroparesis, gluten and dairy intolerance
2013- dx with occipital neuralgia

the only link I could work out between these illnesses is that they are all auto-immune disorders.
my symptoms at present are: 10/10 headaches, like someone is hitting the back of my head with a baseball bat...sometimes it feels like it's burning. I have tremors all over, can barely write and walk due to my limbs feeling so weak. unbelievably sensitive and itchy scalp.
extreme tiredness, random muscle spams and jerks, and dizziness. when I lie down in bed and close my eyes to try and get myself to fall asleep, it feels like everything is spinning, but it comes and goes. it will stop for 2 minutes and then come back.
lastly: my fingertips and toes feel all tingly, sometimes extremely itchy or like a million bugs are crawling all over me.

can anybody else relate to this at all? or am I, as my parents say, a medical freak show.

Thanks for taking the time to read

[lyndacarol]

I'm just wanting to know if there are others like me out there and if my symptoms and other illnesses could somehow be linked to ms.
a little introduction of myself; I'm a 23 yr old female. my medical history is as follows:

2005- dx with endometriosis and interstitial cystitis
2011- dx with gastroparesis, gluten and dairy intolerance
2013- dx with occipital neuralgia

the only link I could work out between these illnesses is that they are all auto-immune disorders.
my symptoms at present are: 10/10 headaches, like someone is hitting the back of my head with a baseball bat...sometimes it feels like it's burning. I have tremors all over, can barely write and walk due to my limbs feeling so weak. unbelievably sensitive and itchy scalp.
extreme tiredness, random muscle spams and jerks, and dizziness. when I lie down in bed and close my eyes to try and get myself to fall asleep, it feels like everything is spinning, but it comes and goes. it will stop for 2 minutes and then come back.
lastly: my fingertips and toes feel all tingly, sometimes extremely itchy or like a million bugs are crawling all over me.

can anybody else relate to this at all? or am I, as my parents say, a medical freak show.

Thanks for taking the time to read

Welcome to ThisIsMS, em1zzle.

You are not alone; there are many others like you out here. You are very astute to see the autoimmunity link between your diagnoses. It is not uncommon for a person diagnosed with one autoimmune disease to be diagnosed later with a second, or even a third. Several of us, including me, here at TIMS have had the diagnosis of endometriosis.

Your description, "my fingertips and toes feel all tingly," is peripheral neuropathy. Numbness/tingling in the fingers/hands and toes/feet is the textbook definition of "peripheral neuropathy." This is a common symptom in MANY conditions; it makes sense to begin ruling out the possibilities as the University of Chicago suggests, beginning with a possible B12 deficiency:

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

I encourage you to see your GP and begin by ruling out a vitamin B12 deficiency. Initial testing often begins with #1 a serum B12 test (about $90), #2 a serum folic acid (or folate) test, #3 a serum homocysteine test, and #4 a urinary methylmalonic acid (uMMA) test. Many of your symptoms can be found on this list (other symptoms, such as crawling bugs, are mentioned in the video):

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue (your "extreme tiredness")
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine ("10/10 headaches")
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders (" spasms and jerks")
Psychosis
Thoughts of Suicide

I highly recommend this 50-minute documentary featuring Sally M. Pacholok, RN, BSN & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); 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):

"Everything You Want Your Doctor to Know about Vitamin B12"




As a parent, it hurts me to say this, but your parents are wrong. You are not a " medical freak show." You have real symptoms and you are taking responsibility to find their cause. If it is discovered that you have a B12 deficiency, it is easily and inexpensively treated. We wish you all the best; let us know how it goes; you have found a group of new, supportive friends.

[em1zzle]

Hi lyndacarol, thank you so much. I will keep trying.