RECHECK?

In May, 1998 (after taking ciprofloxin for an intestinal infection after a trip to Mexico) I developed facial numbness (first in the left side of my face, then to a lesser degree my right), then numbness in my hands, and over several months other symptoms including a fine tremor in my right hand, impaired balance and dizziness. At the very onset of these problems I had problems concentrating, but that problem faded after about 2 weeks (unless I get very tired.) From May to November 1998 I had several neuro exams, a lumbar puncture, 3 MRIs, numerous blood tests (e.g. lymes disease, lupus, etc.) and an ENG.  All were negative. My neurologist told me that he believed I was "post viral" due to the acute onset, that there was a "very small chance" I had MS or a brain tumor, but I did not need to come back unless the symptoms steadily worsened over time. He also told me to expect wide variance in the symptoms.  What he said made good sense to me, so I have not been particularly anxious about the situation.  But almost a year later, I still have all of the symptoms. The dizziness got better last winter and through the summer but has worsened again this fall (any kind of jerky, repetitive motion like shopping or household chores trigger it.) Most of the other symtoms (symptoms) have remained the same or slightly worse overall and a few (like numb teeth and tongue) have disappeared. Also since I last saw my doctor, one symptom I did not discuss with him has worsened quite a bit - a sensation of numbness/tiredness in my my arms and, less frequently, my quadriceps in my legs. My arm muscles will quiver for hours after I work out.  I have not noticed I have less strength in general but sometimes things like using barbeque tongs to turn chicken or using a spray bottle are too much.   My questions are:  1) should I go back to get this checked out again or is it common for post-viral to last this long with some new or worsened symptoms?; 2) if I go back, is there a particular kind of subspecialist it would be advisable to see? Thank you very much for the service you provide.

[CCF Neuro[P] MD, RPS]

Dear Noel:

Sorry your symptoms have lasted so long.  I can only imagine that your are feeling frustrated with the duration of the symptoms.  The really good news is that all of your labs and tests have been normal.  The bad news is the duration of your symptoms in light of the normal tests.  I wish I had an easy answer.  The quinolones have been described to cause neuropathies in a very uncommon side effect.  Post viral etiology can also be the problem.  I would doubt MS, as your signs and symtpoms do not seem to be episodically worse and better.  You do not describe real muscle weakness, also a very good sign.  What is left is a catch all: from your tests and exam there are not a clear and evident disease process.  Sometimes, it takes a tincture of time before we can put our finger on the illness.  Maybe this is what is occuring with you.  

It might be good to get a second opinion.  Not that your first physician missed anything but sometimes a fresh look at all the data with a fresh exam uncovers something vital to a dignosis.

Sorry, I can be of more help.

Sincerely,

CCF Neuro MD

[noel]

Thanks very much for your input.  It was helpful.

[CCF Neuro[P] MD, RPS]

you are very welcome.

CCF Neuro MD

[jean]

Dear Noel, Please visit this site
http://home.att.net/~quinolones/index.html
This is a site where various people have reported similar non-abating adverse events from Quinolone Antibiotics. Also there is a wealth of information on the site.  If you post there others will share information with you.  Three Quinolones have already been removed from the market due to toxicity (Omniflox, Trovan limited to hospital use only) and most recently Grepafloxacin also known as Raxar.  I think you will find a lot of information on this site useful.  While your symptoms could be caused by any number of conditions which your many treating physicians should continue to explore and investigate.  I think you will find the information contained on this site to be extremely informative regarding similar events reported from this class of drugs.  I am no doctor just someone who had similar events unfold that have lasted well over a year following the use of these antibiotics, and likewise many peoples tests provide no diagnostic information for any known disease or etiology.   Many of us have developed both peripheral nervous system problems, arthralgias, tremors, CNS effects etc.  It is my hope that the National Institude of Health will fund some new clinical trials so that appropriate warnings be added to inserts, and that more Physicians and Neurologists especially become familiar with the risks and how to recognize these non abating adverse events that so many have reported.  Unfortunately, until more research is done many of these cases will continue to be labeled as idiopathic and no correlation made to drug toxicity, therefore many assume these are rare events merely because they are underreported as no correlation is made.  I hope you continue to improve and follow up with both a neurologist and Rheumatoid Specialist to determine if any other known etiology reveals itself. However what you report seems to be identical to many of the "antedotal" cases reported on this site and the same reports that appear on this site also appear in the FDA's Regulatory Database Medwatch which keeps statistics on Adverse Events. However FDA does not follow up on outcomes and can provide no information on treatment or duration of these events.  On the above site many of us have attempted to keep track of people's outcomes, treatments, etc.  Hope this is helpful to you and the
Cleveland Clinic Neurologists who in the future may want to peruse prescription drug histories in peoples charts when they present with these "idiopathic" type conditions which you have described.
All the best to you.

[CCF Neuro[P] MD, RPS]

thanks for the comments.

CCF Neuro MD

[Amy]

I'm not sure anyone will see this since it is a few days after the last post...but is it true Trovan has been removed from the market.  I recently (not more than a few months ago) was on Trovan for 10 days and have to say it worked pretty good.  I have developed allergies, sensitivites, or resistances to a lot of antibiotics and it was kind of nice that the Trovan worked when several others had failed.  I can't say whether I had any of the side effects they talked about, I already have lots of peripheal and cranial neuropathies and may not have noticed.

[CCF Neuro[P] MD, RPS]

Dear Amy:

You need to check with your physician.

Sincerely,

CCF Neuro MD

[jean]

AMY,
On the website   http//home.att.net/~quinolones/index.html
Are two links regarding Trovan. One is the official FDA press release and letter regarding its limited use which contains alot of detailed info, and places for people to ask questions.  Also a second link on the site is a petition
from Citizens Group sent to the FDA calling for the BAN of the
drug written Prior to FDA's announcement to limit the drug. I think you will find both articles contain a wealth of information that will be helpful to you.
Good Luck.

[CCF Neuro[P] MD, RPS]

thanks

CCF Neuro MD

[noel]

Jean, thank you for the information concerning quinolones.  I didn't want to burden the CCF doctors with all of the details, but you might find them interesting.  The internist who prescribed the drug sent me to the ER for facial numbness 48 hours after first taking the drug.  Given the fact that I have always been incrediby healthy (age 41 when I took the ciprofloxin, had not taken an antibiotic in over 20 years and I developed the first symptoms about 4 hours after my first pill), I told the ER doctors that I was sure it was the ciprofloxin.  They told me that was impossible and that I should finish the prescription.  When I still pushed for a different prescription, they told me many people were allergic to the other possible type of prescription that would be appropriate.  Better the devil you know than the one you don't, so I finished the prescription.  The symptoms got much worse over the next few days - in particular the inability to concentrate.  (I got lost in my closet for about 5 minutes.) Of course, I then developed/noticed other symptoms several weeks after I stopped taking the drug (tremors, dizziness and balance problems) and have continued to develop some new/worsened symptoms.  So I don't know for sure whether it was the drug or not.  But if nothing else, it would be great for the medical community to be more aware of this possibility - particularly when there are other antibiotics that could be prescribed for something as run of the mill as my intestinal illness.  At least there would be one less possible explanation for these kinds of problems.

[jean]

Noel,
Please view the Quinolones Antibiotics Adverse Reactions forum at the address I gave above. AND PLEASE POST YOUR STORY there and file a Medwatch Report with the FDA.  The more people who post their stories to the site the more Physicians will be educated so this doesn't keep happening to people.  Your story I have heard a 1000 times.  I too ran to the ER and told not from the drug. If someone took 2 seconds to review an insert they would have figured out I was reacting to the drug. Like you I only had a simple cough hardly something you prescribe a quinolone for to begin with when safer things are availabe.  What goes on is astonishing an a HUGE problem and I hope one day the TRUTH will come out and people get educated before more lives end up destroyed.  If you read through the countless forum posts you will be amazed by people complaining of symptoms running to er's calling their docs and the same answer is couldn't be from the drug, stay on it, then once people have finished an have horrendous outcomes they start testing for every known disease and etiology.  Or worse they tell peopel its stress, or their idiots as these drugs don't cause neuro problems or any of the rest.  The same stories play out over and over.  As a lay person I am amazed that I can go to Medscape, or NIH, or the PDR but licensed physicians don't know this and they are giving out the drugs?  Please go to the website I told you about and POST your whole story there.  The more people that do the sooner we educate the Medical World.
Or if you want leave your private e below and I will write to you off the CCF forum as not to disturb them about discussions of Quinolones on their Neuro Forum.  I know a year ago CCF was saying Quinolones could not do the things people often reported and posted to the site.  So I am delighted that the Neuro who responded to you is educated in this arena.  It's a much bigger problem then most docs realize and most of the outcomes could have been prevented if people were educated!
Hope you get better Noel.  I'm still waiting for all of this nightmare to end.

[CCF Neuro[P] MD, RPS]

thanks.

CCF Neuro MD