[daylilyfan]

I have been having symptoms of neuropathy after being on a couple of antibiotics for bronchitis back in early April. Three days after starting the Avelox... I was in bed because of extreme - and I mean extreme! - total body pain and inability to move my muscles. I stopped the Avelox, and the numbness, pain, and tingling in my hands and feet started 3 or 4 days later.

Went to a neurologist a few weeks back. After exam, he said he could not find any information saying avelox causes neuropathy - even though I found it in the prescribing information (!!!)... he sat in the exam room on his laptop looking up Avelox- and could not find anything on it and neuropathy - I also told him I was on a course of Levaquin before the Avelox. How can I find RIGHT IN THE prescribing info, but he cannot? Anyway, he said that he has seen hundreds of cases of neuropathy and I have it. Since my insurance does not cover any testing until a very high deductable is met, and I am not working, having filed for disability... he said that he was so sure of the neuropathy that I didn't need any tests. We discussed lyrica, neurontin, which I cannot take, and he said neuropathy would either stay the same, get worse, or get better - we can treat the pain, but it will do what it will do.

Ok, I already thought it was neuropathy because that is what my family doc said before she sent me to the neuro. Since going to the neuro I also went to my rheumatologist - who is excellent! - and she said she agreed with neuropathy, and started me on samples of metanx and deplin -she thought they might help my pain over all. They are vitamins. I am to take the deplin, then when I finish those, go to the metanx. She said she has had very little success with Savella - but could give me samples if it does help me.

I had to stop the savella after 10 days, because, like Cymbalta, I had trouble urinating when taking it.

One other note... My RSD is primarily affecting my left arm, hand and shoulder, neck and upper back - but started in my right foot. The only sign of RSD I have in my foot is pain - its been in my foot for 10 years. But, my left hand is swollen, red and cold. Left shoulder is partially frozen, swollen and cold. Yet, when you read his diagnosis - he only comments on my Lower limb.

I was supposed to call the Social Security Disability adjudicator with the diagnosis, so I told her he said I had neuropathy.

Then, a week or so later, I ask for a copy of my records. They say it will be $35. So, I figured I would get a copy of the report that he would send to my family doc instead. Got that Monday. I have been furious ever since.

His report says
"I doubt she has developed neuropathy from using avelox, she may have some inflammatory reaction to her infection. It also could cause a flaring up of her RSD? Muscle pain and central pain is possible. I will try her on Savella.
337.22 RSD of lower limb
782.0 numbness"

I have never heard of RSD having neuropathy as a symptom.... nor could I find it as a symptom of RSD in a basic google search

So now what? I am to go back to my pain mgmt doc at Clev Clinic the 20th - am hoping she can make a diagnosis, and maybe restart me on topamax. I started the Savella and like all other anti-depressents, I could not tolerate. I go back to this neuro on the 28th. I want to confront him about why he told me one thing and wrote another... but not sure how to do it.

I had to call back the Social Security adjudicator and tell her that his report and what he told me say totally different things. Made me feel like I was telling her I made it all up or was lying - when I KNOW what he said to me... I am so upset!

So - what would you do? How do I confront him about what he said? Do I go to another neuro? Go back to my family doc and have her figure it out? I don't want neuropathy - who would - but if I DO have it, it's important to get it documented correctly because of being in the middle of filing for disability. I have filed, and they are getting info from docs, I am filling out function, symptom forms etc.

Jules

[Jimking]

Are you filing for SSDI? Is this your first review by Social Security? If it were me I would hire an attorney who specializes in SS cases.

[daniella]

I am slow at the moment so I am sorry if I am confused. The neurologist how did he dx you with neuropathy? He just thought from your symptoms? I would still think dx testing like nc,mris would be needed. My PN was dx through the emg/nc/ssep but I have rsd too. Now with neuropathy if you can find the why behind it then when you treat that it can help the symptoms of neuropathy. I know part of my pain treatment that has been hard is what pain the PN is causing and what pain the RSD is causing. For me the cause of PN is unknown and I am dx tested out. I have been to Cleveland Clinic as well like I told you I think before. For me though it was not about dx it was more pain control.I would and I know it is hard with the financial but ifyou can get into another neurologist. I hope you get some answers and relief.

[mrsD]

http://www.rxlist.com/avelox-drug.htm

click on page 4

Peripheral neuropathy

Rare cases of sensory or sensorimotor axonal polyneuropathy affecting small and/or large axons resulting in paresthesias, hypoesthesias, dysesthesias and weakness have been reported in patients receiving quinolones.

This is a copy of the newest prescribing information. The PN paragraph is under "warnings".

[daylilyfan]

Jimking - I have talked to a lawyer who specializes in SS. And I have a friend who is an adjudicator in another state. Both have given me guidance.

danella - thanks! I expected to have to get an EMG - but he said he thought it was not needed, and with the RSD, would be very painful. My family doc has ordered bloodwork to rule out some things like diabetes, vit. b deficiency.

This was a neuro I had gone to when I first developed RSD - ten years ago. He was the first one to figure out I had RSD. I had confidence in him because of that.

Mrs.D - That is where I found the PN and avelox connection. I don't understand how it was so easy for me to find, yet he sat there and said he could not find any correlation.

Doctors! Grrr

[mrsD]

The fact your doctor could not "find" it in front of you either reflects his deception index, or incompetence index. Either way he appears incompetent and/or unhelpful.

I do take exception to the wording..."rare".... since these reactions are not "rare" at all.

Ask your pharmacy for the original insert for Avelox (they come with each bottle) and highlight it, and give to your doctor.

In fact long acting drugs tend to cause more side effects than shorter ones. Cipro for example is a twice a day dose, and Avelox and Levaquin are once a day.

[daylilyfan]

Mrs. D - good idea. I had not thought of getting the insert from the pharmacy.

I am thinking he does not want to be on record about me having neuropathy related to avelox.

I just put in a call to the family doc, explained what was up, asked about going back on topamax, and where to go from here. I should here from her today after 5.

[mrsD]

Yes, they are ever reluctant to ADMIT... due to liability risk.