Discussions By Condition: I cannot get a diagnosis.

Doctor/clinic recommendations in the San Jose, California area for neuropathy?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: ConfusedNeuropathic
  • June 20, 2009
  • 00:50 AM

Hi all,

I'm new to the forum, and like so many others I see here, am in the midst of trying to get a proper diagnosis for my ailment. I have been aware of this website for a while now, but it's finally now getting to the point where I feel I need to post, because I'm close to my wit's end and desperate for an answer.

I'm a 30 year old male and my current saga stretches back about half a year. I've tried to condense the relevant details below in a long version and a short version :) Any feedback would be very much appreciated.



I developed dull persistent chest pains in the middle and left side of my chest and went to an urgent care clinic. An EKG and chest X-ray both checked out fine and I was given Prilosec for possible acid reflux, which did not help. A complete blood panel did not show any abnormalities (no diabetes or hepatitis) except for mildly elevated triglycerides. A few weeks later, I played basketball and noticed that both calves were tender and sore afterward. I went to the urgent clinic again, and was told I had strained calves and that it would go away.

MARCH 2009:

The chest pains persisted, so I went to another urgent care clinic for a second opinion. The doctor there checked my c-reactive protein, rheumatoid arthritis factor, thyroid function, and sedimentation rate, and didn't find any abnormalities. The chest pain was attributed to stress (around this my wife and I learned that we were having twin babies later in the year).

Later in the month, I developed a cold and noticed occasional blood in my spit. The cold went away after a week, but the bloody spit persisted, so I saw my regular physician. He checked for strep throat but found nothing. He also ran an ANA screen, d-dimer tests, serological vitamin D and vitamin B12 tests, chest X-ray, and urinalysis panel. Everything looked normal except my vitamin D was low (17 ng/mL) and my serum vitamin B12 was in the low range (275 pg/mL). I was told to take oral vitamin D and B12 supplements.

APRIL 2009:

I still had bloody spit, so I saw a sinus and allergy doctor. He found that I was allergic to cats, so I gave away my cat (very sad about this). A CT scan of my sinuses showed sinusitis in all 4 sinuses and a relatively deviated septum. I was given Avelox, but had a bad reaction (leg tremors) to the first pill, and was immediately switched over to Augmentin. After 9 days on Augmentin, I developed widespread pruritus, which the doctor said was a penicillin allergy. So I was switched over to Biaxin XL, which I finished. All in all I was on antibiotics for about 23 days total. The bloody spit cleared up, so it was likely due to postnasal drip from sinusitis.

In late April, I saw an ENT just to make sure there were no nasal polyps. He did a nasal endoscopy and said things looked fine.

MAY 2009:

Following the antibiotics, I developed constipation and very painful, bloody bowel movements. I had an anoscopy and sigmoidoscopy performed and the only abnormalities were hemorrhoids and an anal fissure. I was told to take docusate sodium stool softeners and hydrocortisone suppositories. Painful bowel movements subsided. While occasional lightly bloody stools remain, they are infrequent and likely due to hemorrhoids.

Around this time, I also noticed feeling dizzy constantly. I chalked that up to the antibiotics and didn't think much of it.

At the end of May is where the current fun began. One day I noticed my hands and feet felt a little tingly. Thinking it was dry skin, I put on some lotion and thought nothing of it. But it persisted and got worse. After a few days the sensation alternated between itching (with no rash) and burning/prickly/tingling, almost "electrical," feelings. It was mostly in the limbs. I called my doctor who advised I go to the closest ER for possible heart attack or stroke.

The ER did a brain CT scan, complete blood panel, and EKG. Nothing unusual turned up and they discharged me with the diagnosis of "neuropathy/paresthesias".

I then saw my primary doctor and he told me it was all due to anxiety. He prescribed some SSRI antidepressants and told me I needed to relax! I did not take the SSRIs because I did not believe him in the least.

JUNE 2009:

I saw a neurologist who did a nerve conduction test and found nothing unusual. He ordered a brain MRI and cervical spine MRI with dye, neither of which showed any signs of active disease. I did have some mild-moderate cervical spine arthritis and neuroforaminal stenosis which was unusual for my age, but that did not explain the neuropathy/paresthesias. The MRI also showed that I still have some lingering sinusitis. I was also tested for heavy metal toxicity, homocysteine levels, and myeloma monoclonal proteins, but none showed anything strange.

I know HIV can cause neuropathy, so I went to the local clinic and got tested for HIV. The result was negative.


Since the itching and burning/prickly/tingling feelings started several weeks ago, they have slowly but progressively gotten worse. I have felt various odd sensations, but the predominant ones are itching (without rash) and burning in the extremities. Sometimes I have tender feet and my legs feel weak. The chest pain is still there and I am still dizzy all the time, which is very bothersome. I also feel very fatigued and have a hard time getting out of bed in the morning. In the last few weeks I've also lost some weight despite eating normally -- I'm normally pretty thin already at 5'8" and 138 lbs, and am now down to 130 lbs.

However I am still able to -- with some discomfort -- work, drive, walk, and go about daily activities. The vitamin D and B12 supplements I've been taking seem to have had no effect. This week I purchased some "nerve support formula" supplements with super high megadoses of the entire vitamin B complex (including benfotiamine and methylcobalamin) to see if that would help -- so far, no difference.

My physician has been very dismissive about the whole thing. He refuses to acknowledge that I'm actually ill and continues to insist that everything is due to anxiety over my upcoming child (actually children since we are having twins). But there is no way this is the case. I was actually very excited about the babies.

But since my body started going berserk months ago, I have become increasingly worried and depressed and am now in very poor psychological shape. I feel like I'm teetering on the very brink of sanity and don't see any hope of ever being well again. I am no longer able to hide my depression and smile through the symptoms. My wife is worried, and I know she can see my distress and don't want to worry her during the pregnancy, but I have no further ability to conceal it. So now I'm pretty much clutching at straws as to finding a solution -- my physician refuses to refer me to a specialist for further examination so I'm contacting them on my own.

My question to you all is this: are there any obvious possibilities that have been overlooked in all of this? Or, better yet, can any of you in the San Francisco Bay Area recommend a good physician that I can see about all of this? I live in San Jose but will drive anywhere at this point. I'm not even sure what kind of specialist I should be seeing. My doctor has told me not to try to self diagnose, but since no one else seems interesting in diagnosing me, I don't see much other choice and have been spending lots of time searching online. So far the things the symptom checkers seem to be pointing to, that haven't been ruled out via testing, are vitamin B12 malabsorption, celiac disease (I have noticed a change in stool odor and consistency recently -- sorry if that's TMI), and some cancers (leukemia and Hodgkin's lymphoma mostly). Could a serum B12 level of 275 pg/mL or even celiac disease cause these problems?

If there is any direction or physican recommendations you can provide here, I would be most grateful. Thanks so much!

-- One very disturbed neuropathic dude

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