See the rheumatologist and/or neurologist to get my numbing/tingling in my feet/hands diagnosed

My neurologist believes that my numbing and tingling was triggered by some kind of a virus that I had last year. She reached this conclusion by elimination of other causes and from some of my symptoms and the way that they came on. It is very likely that the numbing and tingling may eventually go away, and in any case is unlikely to get worse, as it hasn’t gotten worse in several months. If it does get worse there is medicine I can take (which my local neurologist told me about), but she and I both agree that I don’t need really the medicine right now.

It’s not a definitely diagnosis, but it is definitely good news that I apparently can rule out any not so good diagnosis and not worry so much about what might be ahead for me in the future as far as symptoms.

Some more good news: my chronic cystitis seems to be gradually improving—each week I seem to be feeling a little better!!!

Thanks to everyone for your support and prayers for me during all of this :-D

_{P.S. My lip still hurts :-(}

and check in with Neurology in a half hour. I had a safe and uneventful trip to Rochester—thanks to everyone for your prayers.

More fun and games today—I had a cystoscopy and was diagnosed with “chronic cystitis”, which explains all the UTIs and feeling like crap the last 14 months.

One type of chronic cystitis is called interstitial cystitis, in which the deeper layers of the bladder lining remain inflamed causing symptoms after the infection or other possible causes have been eliminated. In chronic cystitis there is more likely. to be recurrent or ongoing lower abdominal pain. as well as frequency and urgency. Fever, burning and bloodstained urine are less common. The symptoms of cystitis are very distressing. particularly if the attacks are recurrent or the condition chronic. Apart from the pain. activities are severely restricted by the need to stay close to a toilet Frequent attacks can disrupt your home life and career. and lead to isolation. anxiety and depression.

Mine was not just around the bottom of my bladder, but all over it. It kind of looked like measles :-P

I’ll be taking a low-dose antibiotic for (at least) the next 6 months and then I get to have another one of these fun procedures. The doctor assured me that it wouldn’t be anywhere near as painful the next time (if the antibiotics work). HA! Maybe he should read this:

Because bladder distention is painful in patients with IC / PBS, they must be given some form of anesthesia for the procedure.

Mayo Clinic called me today, and my appointment starts on January 3rd. I’ll be seeing a neurologist who specializes in peripheral neuropathy.

and they don’t have any record of receiving anything regarding me from my neurologist, so…I called the neurologists office and left a message for the nurse through the other nurse (who seemed a bit snippy about it). I’ll see what I hear back.

I also called my primary doctor’s office today to check on the results from the culture done last week, so hopefully I’ll hear back on that tomorrow and see if I’ve been taking the right medicine. Since tomorrow’s the last day of my antibiotic and I’m not really feeling any better, I’m very curious.

Meanwhile, I think I’ll call the urologist office tomorrow and see if I can get in earlier than next Wednesday, should they happen to have any cancelations.

on October 24th. I was hoping to get out of this, but since I have another UTI, I have no such luck :(

Still waiting to hear from Mayo about my appointment up there. I guess maybe I should call them to make sure they got the stuff from my doctor’s office.

one thing against going, I found out today that Mayo does not accept “assignment” on Medicare, so I will end up paying lots more than I otherwise would have to—the difference between what Medicare says should be charged for a service and what Mayo actually charges.

Yesterday I had a glucose tolerance test done, which is a better indicator of pre-diabetes (and diabetes) than just a normal fasting blood test. All the results were normal, which means that it is highly unlikely that my numbing and tingling is due to pre-diabetes. My blood sugar probably still needs to be watched for another 6 months or a year, just to make sure, but this is a major relief for me.

I saw my neurologist today, and he didn’t have any more tests to run. His recommendation is that I go to Mayo Clinic (in Rochester, Minnesota) to see if they can come up with anything. This involves an approximate 500 mile drive and up to 6 nights in a hotel, all of which is not covered by insurance, so it is not a cheap endeavor. SO, I have to make a decision on what I want to do, but it’s not an urgent decision, so I can take a little time.

I had an appointment today with my primary care Dr. to check up on my UTI (and to discuss my visit to the urologist last week. I discovered that when they prescribed the medicine I said that I didn’t want (because I’d been given it the last two times and it didn’t work), they apparently didn’t prescribe a strong enough dose according to the results of the culture. AAAUGH!!!

Anyway, she did what I was hoping she would do and prescribed another antibiotic for me to start now (I finished the other one today) so we can hopefully keep on top of the infection and get those bacteria ZAPPED!!!

_{For earlier episodes, read here}

I was just lying in bed feeling very crappy, and thinking that I had some kind of a UTI (even though the urologist told me on Monday that I did NOT have an infection), when the urologist’s office called and said that they had sent my urine out for a culture and I DID have an infection. I asked if that was normal for it to not show up in their test, and she told me that the test on Monday did show bacteria, just no nitrites (nitrates?). AAUUGGHHH!!!!!!!!!!!!

By the way, for those who didn’t ready my comment to Coastalgal last night, I went to the neurologist yesterday and all the results from my spinal tap were normal. YAY!!! Now for more tests :(