CMT in some caused by Fluroquinolones

[seasider18]

My problems started after having been three times prescribed CIpro and Fluroquinolones.

My electrical conduction and genetic tests were inconclusive but a later specialist concluded that I have a type of CMT although I do not have many of the classic symptoms. I thought that at 80 such a disease would have appeared much earlier and would have had relatives with it.

hormonesmatter.com/fluoroqu...

The effects of Fluroquinolones ( Fluroquinolone Toxicity Syndrome) are not always immediate and can be triggered later by other drugs and mistaken for fibromyalgia syndrome (FMS) and other conditions.

[Banjogirl1]

I took Cipro @ 8 years ago and both of my achilles ruptured. I did my own research and figured it was because of the Cipro, but no one took me very seriously

[seasider18 in reply to Banjogirl1]

Are you still affected by it ? I now have to use a rollator or a wheel chair to get around. The 'neuropathy' affected my gait and has given me back problems but insomnia is almost as bad

Have you looked at Fluroquinolone help groups like Floxie Hope?

floxiehope.com/

There was a conference in London by the EMA European Medicine Agency

that is worth watching on Youtube to hear the evidence from affected people and experts. It has three links on the right hand side.

I have been to two neurologists one said probably a form of neuropathy the other a version of CMT.

Pharmacists have been given warnings about them being prescribed for non life threatening conditions and doctors should also all have had them by now. MHRA are going to update patient leaflets with medications.

[Banjogirl1 in reply to seasider18]

Well...I had injections of lidocaine and glucose into my achilles regularly for over a year. I limped around on those feet for a few years. They seem ok now. However I have fractured both wrists at separate times since then, had back problems, knee problems (both fractured well before the achilles problem). My mobility is compromised but I keep on going. I do worry for the future.

[seasider18 in reply to Banjogirl1]

You have had a bad time of it. What was the cause of the fractures and back problems?

[Banjogirl1 in reply to seasider18]

Oh, about 30 years ago I blew one knees out getting off a ski lift...my bindings didnt release. A year later, I had a pack on my back and bent over to pick up a bus ticket I dropped..and my knee snapped. Tibial plateau both times. I didnt get diagnosed with CMT for many years later, in my 40’s. It was an informal diagnosis as the neurologist said I would not be able to get life insurance if it was formally diagnosed, and my daughter was only 5 or so at the time. I have a very crooked spine, hence the back problems, and extremely high arches.

[LoolooLacey2]

Hi, I have just read your post and part of the articles on Cipro etc, this is very very interesting indeed. I have had lots of courses of broad spectrum antibiotics over many years due to all sorts of infections - 3 x pneumonia, dental infections, sinus persistent problems etc etc. Too many to remember, I would need to get access to my GPs notes to see when and often I had these. I do not understand all the technical data in the articles, but it sounds like these could be the cause of bringing to the fore some dormant genetic diseases. I am not allowed to have Co-Amoxiclave or Septrin (or any broad spectums) as my liver reacted badly a number of years ago, so it is in my notes not to be given. I am now only to have Penicillin if absolutely necessary. Would Flucloxicillin be part of these drugs, I must check. Although I have a genetic myopathy supposed to be inherited, I never had the neuropathic stuff until about 3 years ago, so this could be the connection. It is very very interesting indeed. Thank you for bringing this issue up, I am going to do a bit more research into all this.

[seasider18 in reply to LoolooLacey2]

Flucloxicillin is not related to Cipro or Fluroquinolones o hopefully you may have avoided them.

[Banjogirl1 in reply to seasider18]

I have read interesting theories lately on Cephelexin causing psychosis ( it’s one of the few antibiotics I can take). I work in psychiatry so this is particularly interesting to me.

[Blubabycakes]

Wondering how many genes did they look at. ?

[seasider18]

In my case ? They didn't say. The next neurologist suggested that their were differing genetic tests.