What could this be?

[Paul]

I apologize for being a little long, but I will try to give you some background info.  I am a 26 year old male, healthy, 5'8", 155 lbs., not as active as I should be, but try to get to the gym a couple of times a week.  Regular meds I was taking until April of this year were Claritin D and Flonase.

Feb. 2000 - I was hanging insulation in my new house (working with my arms above my head) for about 2 or 3 hours.  By the end of the day, I had a dull ache in my left armpit.  To me, it felt like a lymph node was swollen deep in my underarm.  Over the next few weeks, I made several trips to the doctor and it was always diagnosed as a strain and I was prescribed some NSAIDs.  The ache seemed to go back and forth between each underarm and did not seem to go away (although, I became quite obsessed with it).

April 2000 - Aching was still there.  While listening to my chest, my GP thought she heard some rattling in my right lung.  She decided to do a chest X-ray to see if she could see anything.  She felt that there was a slight pneumonia in my right lung and prescribed 500 MG of Levaquin for 10 days.  I thought that was strange, because I didn't feel sick and I wasn't coughing.  She also kept me on the NSAIDs (Relafen).  I later found out that the radiology consultants felt it was a chronic inflamation and not a pneumonia.  My doctor still felt it was some sort of infiltrate (I think that's what she said).

I took my first dose of Levaquin, and that night, experienced tingling going down both arms as I laid on my back.  It happened two or three times that night.  I called my GP the next day to see if either of the drugs could have caused that, and she said no.  She told me to stop taking the NSAIDs (which I later found out should not be taken with Levaquin anyway).

I continued taking the Levaquin for the full course, but each night as I slept, the tingling in my arms had gotten worse, progressing to the point where if I slept in the wrong position, my arm would become completely paralyzed and I would have to straighten it out with my good arm to get the feeling back.  It always came back within 30 seconds and there didn't seem to be any longer-term effects.  However, the aching under my arms went away during this time period.

My GP sent me to a neurologist.  Exam was normal, although no electrical tests were done.  He diagnosed me with carpal tunnel since I play the guitar.

As I got off of the Levaquin, the problem got better, but never comletely went away.  It seems that since taking Levaquin, a lot of my nerves in my body are more sensitive to pressure or trauma.  My legs will tingle (very faintly) if I sit in the wrong position.

I know others have posted questions regarding neuropathy created by Levaquin or another quinolone, and it has been your opinion that it can't or doesn't happen.  However, I have talked to many people over the internet who share almost identical stories to mine.  We all never had problems with tingling and numbness until prior to taking Levaquin.  Many claim to be better now, but that it takes 12-16 months to get to that point.

In the meantime, after a second visit to my neuro (still no electrical tests) he has diagnosed me with Hereditary Neuropathy w/ Liability to Pressure Palsies (HNPP).  I don't necessarily agree with that diagnosis since the genetic test was not done and that is a relatively rare condition (20-40/100,000 people at most).  I am requesting the genetic test to find out for sure if that's what it is and am willing to pay for it myself.  I don't have a family history of this problem and I have never had any numbness or tingling problems until I took Levaquin.  He still said that all the testing he did turned out normal.

My questions are:  Is HNPP the only possible diagnosis in my situation (since I have yet to find a doctor who will give any credence to the Levaquin theory)?  Is there something else that could cause one's nerves to be more sensitive that is not some sort of chronic hereditary demyelinating disease?  It has been four months since this has started, and approximately 75% of the nights I have some sort of numbness/tingling etc. as I sleep.  However, I have not lost any motor function or sustained any long-lasting numbness.  In fact, I am able to shake-off any tingling or numbness with in 30 seconds of realizing that its happening.

I appreciate any light you can shed on this as it has caused me tremendous worry for the past 4-6 months.  I don't think I am ready to handle the thought that I may have a chronic demyelinating disease with no cure or treatment (even if it's not that bad compared to other diseases).  I sincerely thank you for your help and the service you provide.

[Paul - Follow up to the CCF NEURO]

Oops!  I forgot to mention that the neuro OK'd the Genetic Test and I will try to get it done ASAP.  Thanks!

[Paul - Follow up to the CCF NEURO]

Thank you for your respose.  It is nice to hear a Doctor who doesn't completely rule out Levaquin as the source of my problems.  I have a follow up question, if you don't mind?  
Does the fact that my tingling and numbness seems to correlate to compression and position make it more likely to be HNPP or does any polyneuropathy make you more susceptible to pressure?  Like I said before, I have talked to others who have had compression neuropathies since taking Levaquin or other quinolones that they did have before.  Thanks again for your help.

[brian]

Amy,
The website  www.geocities.com/quinolones/ may be of interest. Similar reports are there and research links. Wondering if magnesium plays a role in these reactions?  There is not much if anything, written about the "mechanisms" that cause this.  Maybe one of the Cleveland Clinic Neurologists have an idea?

[Paul]

Amy,
I'd be happy to let you know more about what has happened to me.  I summarized it pretty well above, but I left out some of the details of certain times when my body would tingle, and the anxiety I have been through.  Most of the info I have found out has come from the following bulletin board:

http://www.egroups.com/group/quinolones

and also, the web site Brian has listed above.

I'm very confused about my situation right now.  I really want this problem to be a result of the Levaquin because I think, with time, I will get past it.  However, since my neuropathies seem to be so dependent on body position/nerve compression, etc. I can see how HNPP might be a likely culprit.  Right now, I guess I look at it as a 50/50 chance of either one of those possibilities.  However, I have spoken with many people on the Egroups Bulletin Board who also say that after taking Levaquin, their body and nerves are much more sensitive to position/compression.  Like I said, I'm really confused now.  Thanks and good luck with your health.

[brian]

Amy,
www.geocities.com/quinolones/
has like posts and research links that may be of interest to you.
Do any of the Neurologists know if magnesium plays a role in these outcomes from this class of drug?

[Amy]

I would like to know more about this Paul.  If you want my e-mail address post another message here.  I took Levaquin for 14 days for a sinus infection and have had the numbness and tingling ever since, although it is much better now and comes and goes.

[CCF Neuro[P] MD, RPS]

Dear Paul:

Sorry to hear about your problem.  I am not sure what to tell you about the neuropathy, but yes quinalones have been reported to cause neuropathies (see the package insert).  It is rare but does happen.  I would seek the genetic test, your neurologist can order one, for HNPP.  If the problem was initiated by the quinalone, it should resolve in several months (how long for you as an individual is variable).  Keep us informed.

Sincerely,

CCF Neuro MD