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It's been about a year of not being able to live life normally. I honestly don't know if I can keep doing this. A year old doctors, getting poked, prodded, scanned, all with no result. I have medical card so I'm sure most of this amounts to doctor's just dragging their feet and trying to soak up Medicaid funds. If I don't get a direct answer on this soon, I'll probably actually lose all of my marbles. Here's a gist of symptoms that's been happening repeatedly. This isn't nearly all of them, though. Suggestions, advice on how to handle doctors, and what tests need to be ran would be GREATLY appreciated.
This has completely changed my life-style during a flare up. During a flare-up, I'm unable to shower because I can't stand, inability to drive due to vertigo and muscular weakness; light sensitivity also makes it pretty impossible to drive, especially at night, cannot seem to eat without feeling nauseated. I also am more susceptible to catching common illnesses event though prior to this year, I've been relatively strong with my immune system. Any suggestions or advice?
- Generalized muscle weakness; mainly in legs and very much so in my right leg. Mainly in my quads.
- Tingling and numbness in my extremities. Effects all limbs.
- Intense pain in my middle back; almost takes my breath away.
- Pain in legs and stomach.
- Large amounts of blood in urine with no medical cause; blood still present after cystoscopy. CT Scans of kidneys show no cause.
- Inflammation of extremities. Especially hands and my entire thigh (from hip to under knee, calves aren't affected; minimal swelling in toes.
- Occasional loss of breath even when resting.
- Heart palpitations, accompanied with minor to moderate chest pain.
- Mobility issues; I'm 23 and walk with a cane. Even the cane is getting to be unhelpful at this point.
- Extreme fatigue; normal B12 result.
- Fainting and seizures.
- Urinary incontinence; sometimes just leakage, sometimes fully incontinent. Also unable to feel like I've emptied by bladder all the way.
- Light sensitivity; accompanied with pupillary changes. My pupils were normally very small and now it looks as if I've just had my eyes dilated at all times.
- Extreme vertigo when lying down or when moving. Failed neurological test of standing with eyes closed and arms outstretched to the front of body. Vertigo has caused me to lose consciousness. Vertigo is a relatively new symptom (only around 3 weeks since first debilitating occurrence).
- Reoccurring low grade fever; even when asymptomatic.
- Swelling of axillary lymph nodes.
- While in resting position in the ER, my heart rate would fluctuate wildly. Going from 62bpm up to 129, and bouncing everywhere in between; up and down constantly.
- Blood pressure swings as well. Highest: 169/137 Lowest: 105/45 (I lost consciousness)
- Elevated Sed Rate
- Elevated CRP
- Last night in ER, received positive D-Dimer test.
- Liver function blood test has been both positive and negative over the course of this year.
- Normal Thyroid, TSH, WBC, EEG (4 hour), EKG (immediate read testing), negative AIDS/HIV testing… Only thing showing up out of the ordinary is the positive D-dimer and elevated inflammatory markers.
This has completely changed my life-style during a flare up. During a flare-up, I'm unable to shower because I can't stand, inability to drive due to vertigo and muscular weakness; light sensitivity also makes it pretty impossible to drive, especially at night, cannot seem to eat without feeling nauseated. I also am more susceptible to catching common illnesses event though prior to this year, I've been relatively strong with my immune system. Any suggestions or advice?
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