posted
I am a male in my early 30's. It all started one day about 6 years ago I was sitting at my desk at work and had an awful urinary urge and unexplained bladder pain. After using the bathroom, the urge did not go away and persisted for weeks. This was something I've never felt before. After being treated as if I had a bladder infection or UTI to no avail, I consulted the advice of a urologist.
After many different tests over a year, and visiting 2 different urologists, nothing came back positive. I was given a drug for bladder pain which I've now been taking for 5+ years.
Fast forward about 1-2 years, I began having an aching pain around my knees and the fronts of my legs just above the knees. Some days it was there, others it was not. When it was there, it was an awful aching pain like I've never felt before. It also seemed there was a correlation between when I felt the bladder pain and when my legs/knees hurt.
After a year or so of off & on knee/leg pain, I noticed a new symptom. No longer were my knees/legs aching but instead, I had this tingling & numbness in my legs, knees and feet and also noticed it occasionally in my hands and face. I went to a neurologist who tested for MS and performed other nerve testing. Nothing came back positive.
About the same time, I started having sinus problems most notably, post-nasal drip and having to clear my throat dozens of times a day. Again, I went to a specialist for this problem and again after testing including allergy tests, nothing was found. I was given a nasal inhaler and told to use sinus cleaning solutions.
I next went to see a Rheumatologist for my continued tingling & numbness problems who also performed multiple tests but like the others, was unable to find any reason for my problems. I did test positive for a 'scleroderma' antibody twice, but have no signs or symptoms of scleroderma.
As of today I continue to have daily tingling & numbness sensations in my legs, around my knees and sometimes my feet. I also noticed recently my arms seem to fall asleep 'pins & needles' very easily. Twice in the past 6 months I woke up to both my arms completely numb and asleep. As I sit here and type I feel a dull numbing tingle in both feet and both knees.
I've had at least one, maybe 2 negative Lyme tests over the past 5 or so years, but never once thought it could be Lyme. None of the Dr's I've seen have ever once even suggested Lyme, especially knowing that any Lyme tests I had came back negative. It wasn't until recently that I started doing some research about undetected Lyme and the symptoms that I thought perhaps it could be Lyme.
I've been dealing with undiagnosed and unexplained problems for 5 years now, I figured I should at least consult a Lyme specialist to rule it out since nothing else has been ruled in. Aside from these problems, I am a relatively strong & athletic guy. I think my size and build make some Dr's think it's all in my head. In fact, one urologist told me 'you are fine just stop thinking about it'(the bladder pain). I just asked my neurologist's assistant about Lyme today and was told (we don't really see false negatives).
As soon as I started to research Lyme, I remembered an incident maybe 5-6 years ago when I pulled a tick off my leg in my bathroom. I remember it was fairly easy to get it off my leg, as it never really burrowed into my leg nor did I ever have a bullseye that I recall. However, the fact that this occurred sometime in the same range of time when I started to have problems led me to do some research and find this site.
If there is a Lyme specialist who reads this and would like to reach out to me by email, that would be greatly appreciated.
Thank you
Posts: 12 | From NORTHEAST | Registered: Nov 2010
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Scott and Welcome to Lymenet! We are happy to have you. I sent you a private message (pm), click on the flashing envelope.
Also, check out our great "Medical Questions" forum where you can ask all the questions you might have and our wonderful, knowledgeable members will answer them. Just read some of the threads and you'll see just how informative they are!
There is also the ``Search'' feature at the top of the page where you can enter the subject you are wanting info on and all the threads on that subject will appear. This is a great way for you to learn, research and gather the information you are interested in, it's just at your fingertips!
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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posted
Thanks to everyone for the PM's and your sincere concerns and willingness to help. I am beginning my search for an LLMD based on your messages and am grateful for your assistance.
Posts: 12 | From NORTHEAST | Registered: Nov 2010
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posted
Scott.. I can't believe your urologist never tested you for Interstitial Cystitis. PAIN is the hallmark of IC.
My IC was caused by Lyme and it is much better after Lyme treatment.
Go here for help while you search and find an LLMD. Diet can go a long way in relieving your pain. There are also meds you can take to improve symptoms.
posted
My urologist did do some tests, but never found anything definitive. My understanding is IC is often diagnosed based on an exclusion of everything else. They took pictures inside my bladder and found nothing.
They put me on Oxybutynin which I've been on for 4+ years. The NP thought I may have IC, but the M.D. was never convinced. Despite putting me on Oxybutynin, he said it's really odd for a person my age to have bladder pain and need this drug.
Posts: 12 | From NORTHEAST | Registered: Nov 2010
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