Worried about neuro symptoms - any thoughts?

[Flipzoid]

This may well not be connected but about 9-10 months I developed an infected rash on my chin for which my doctor perscribed anti-biotics. I then started experienced pains in the back of my arms (near the elbow) and cramping just below the ribs. I had a blood test for my white blood cell count, mono, and even visited a tropical disease department (I had been in south east asia 10 months ago) and all tests came back fine. However about 3 months ago I started getting pins-and-needles in my hands and arms which was shortly followed by:

- twitching in my left eye lid and lower lid. Went on for 2 weeks non-stop at one point but continues on-and-off daily.
- spasming muscles (all over my body but especially in the legs and bottom of my feet).
- a sort of static like buzzing/vibrating feeling in my legs (very strange feeling)
- pain in the top left hand side of my back
- one ear feels quite blocked (a numb pressure)
- On the upper thigh of both legs I can feel a strange lump under the skin.
- tiredness (maybe caused by feeling down due to the above symptoms)

I am waiting for my referal to a neurologist which I am waiting on the appointment.

These are the freakiest and most unsettling feelings I have ever had. It feels like im part of a David Cronenberg movie with things happening inside my body which I have no control over.

Has anyone had similar symtoms? Any thoughts?

Thanks in advance,

Mark

[CCF-Neuro-M.D.-PW]

Infectious rashes are common and can occur from a wide variety of organisms such as viruses, bacteria (strep), Lyme, mycobacteria etc
The other symptoms you describe can also be consistent with for exmaple a viral infection
In this case, a primary neurological disorder is less likely
Drug side effects are also possible - although your symptoms are not typical for mononeuritis multiplex or peripheral neuropathy as mentioned
Antibioitcs are some of the most toxic or side effect prone drugs we have, including foro example the penecillins
However, without antibiotics, countless lives would have been lost to infection

To diagnose whether you have a neurological condition or not, you need a formal neurological examination by a neurologist as you are doing, then appropraite testing with for example nerve conduciton studies or EMG to pick up a nerve or muscle problem. You should continue to follow with your medical doctor as a neurological disorder may not be present, and your symptoms may be due to something else.

Good luck

[Flipzoid]

Oh and just to add - my doctor also tested the reflex's of my legs (hiting just above the knee) and seemed surprised at how over active my reflexs were. He asked if I was very tense. Of course I've been feeling very worried but not particularly more tense than normal.

Mark

[Flipzoid]

Ooops sorry to keep posting but just to add - I'm a 29 year old male and prior to these symptoms was of good health.

[johnflox]

Your symptoms fit exactly with an intoxication by a quinolone antibiotic, like cipro, levaquin, avelox and others. But could be something else obviously.

First of all you should check what antibiotics did you take, and then set a diagnosing procedure.

An extremely high percentage of people that take quinolones develop reactions due to their toxicity, not due to personal conditions. Nearly all reactions have their onset days to months after completing the treatment.

[Flipzoid]

Hi,

Thanks for the reply. I had never heard of "intoxication by a quinolone antibiotic" before and am not sure what the antibiotics were that I took. When I (eventually!) get my appointment to see the neurologist I will mention this to see if he/she is familiar and if so whether they think its a posibility.

Thanks again,

Mark

[patsy10]

Have you looked into Lyme disease?   Your symptoms are similar.  You might want to try a google search.

Good luck

[snoopy_301]

I was a  healthy, fit 39 yr. old woman and was having many of the symptoms you are having - muscle spasms, twitching, vibrations/buzzing, and muscle soreness all in my legs and feet.  My eyes started twitching two weeks ago  may be my eyes are due to stress).  I posted a comment here and someone asked me if I had taken Cipro and the ironic thing is that I had - three days before my symptoms appeared!  I never put the two together - I never knew an antiobotic could do this.  I've seen a dr and had a MRI of brain and complete spine, lots of blood work and nothing shows.  I believe it was the Cipro - the timing fits and they can't find anything else.  With as healthy as I was, nothing else makes sense.  Good luck!

[johnflox]

The chances that your neurologist is aware of quinolone's toxicity are very low indeed, close to zero. Apparently there is the rule of the thumb among doctors that quinolones are very safe antibiotics. That is far from the real thing. Probably it will still take years before such well known toxicity becomes common knowledge among doctors.  

You should do your best to check what antibiotics you took, just to rule out a reaction to quinolones because if you are suffering one, next time you take those medications you can end up with irreversible injuries, for-life conditions. The curious thing is that victims start to notice those lesions weeks or months after the treatment, when there is no possibility to reverse the damage.

One year ago, all fluoroquinolone antibiotics have a warning added to the package insert alerting about irreversible, mostly neurological, conditions if taken after the first signs of toxicity, or if you are rechallenged. The warning is based in the exprience of thousands of cases of perfectly healthy and athletic people that were severely disabled by quinolone antibiotics taken for common causes like a sinus infection or a prostatitis.

[Flipzoid]

Hi,

Thanks again for your replies. I am not 100% sure but I think I have taken the following antibiotics over the last 10 months:

Rocephin, azithromycin (Zithromax), and doxycycline

[Flipzoid]

Thanks for posting about Lyme disease. It is one of the posibilities I wanted to discuss with my neurologist. I am not sure if all my symptoms fit but... im not really sure what my symptoms fit with!

My cousin has MS and obviously this is a worry for me. However I don't think I have noticed any muscle weakening which is slightly reasuring.

Thanks again,

Mark

[mrssmr71]

My husband age 35 has been having similar problems.He has seen several nuerologists not one of them can dx him. They don't know. He has diabetes,severe sleep apnea, high BP. He had a muscle biopsy done but order was not done right, no answer.
His CPK levels have been elevated as high as 400 after repeat blood work it has varied between normal and high readings.Lyme test is neg. Several cardio tests where done all ok. He suffers w/ Severe Muscle spasms effecting all muscles through his body. Mainly has effected his lower extremeties. He is always in severe pain, currently on MS Contin 3x's day, seems to be helping with the pain. Mobility is challenging long distance use w/ wheel chair, otherwise walks short distants with a cane.
Completely unable to work.
Any info would be helpful.

[patsy10]

Just to let you know, lyme tests are very innacurate and unreliable.  You can test negative and still have it. I've seen 3 neuro's and none of them knew anything about lyme.  The best doctor to see is a lyme specialist.  You can find one by going to lymenet.org.  You can also ask questions here and find out a lot more about the disease.  It's worth at least looking into.

[Flipzoid]

Hi Carol... thanks for the reply and for posting that link.

I have to say that many of the symptoms outlined seem to correspond to mine. I will see my neurologist and unless something else obvious shows up in the results I will have to try and find a Lyme specialist here in England (if there are any!). I'll have to read more about Lyme disease as im not sure in what parts of the world the lyme tick is found. I have only been in the UK and South East Asia.

Thanks again,

Mark

[Flipzoid]

Oh and also thanks patsy10 for the link :)

[Patster]

First time here.  My husband has been suffering with symptoms similar to those of floxing.  He took Avelox last March for sinutitis, then two weeks later, Prednisone.  He didn't have any symptoms until June 11-woke up feeling weak and "foggy".  It went away for about two weeks, then came back with a vengeance on July 9th.  We have been to so many drs. and the Mayo clinic.  All tests show in or just above normal range.  He has not returned to work and has been denied "disability" because of no diagnosis.
His symptoms are depersonalization, tingling, burning and numbness.  Just before he falls asleep or just after he has a wave of "burning" all over him which keeps him from sleeping.  He is very weak,  has ringing in his ears and "floaters".Also, he just had a spinal tap and his protein was borderline high.  

My questions are:  Is it possible to have a response from Avelox three months later?  and--Where is there  a doctor or clinic that acknowledges this and will help with symptoms/treatment?  Please help. Thanks.

[johnflox]

Reactions to Avelox and other quinolones become apparent (in the vast majority of cases) some months after completing the treatment.

Maybe your husband has a not very severe reaction to Avelox and can heal soon. You have a divulgative report about the toxic profile of quinolones at:

www.fluoroquinolones.org

You also have a very comprehensive database at:
www.fqresearch.org

It is almost impossible to find a doctor that has just a notion about the toxicity of quinolones, eventhough these antibiotics have an extremely high percentage of reactions, that reaches 100% for some therapeutic doses. Dr. Flockhart in the University of Indiana has seen several hundred cases. See or contact also Dr. Cohen, at www.medicationsense.com, because he also has some knowledge about it.

A handful of other doctors have deducted that there is this enormous silent epidemic of people damaged by quinolones, and refuse to prescribe them.

[Patster]

Thanks so very much for responding.  Looked up www.fluoroquinolones.org and got a lot of info.  Also, my husband started  symptoms in  June and in the last six weeks they are getting worse.  Do you get worse before you get better?
Thanks

[WARRIORMOM]

hEY, i AM SORT OF NEW AT THIS, WAS TRYING TO POST A QUESTION, BUT TO NO AVAIL IT WILL HAVE TO WAIT. ANYWAYS,INTOXICATON TO QUINOLONE IS A VERY GOOD SUGGESTION. HAVE YOU LOOKED AT THE POSSIBILITY OF REACTIVE ARTHRITIS. AN ADULT FRIEND HAD A CHILDHOOD VIRUS(5TH DISEASE), RASH, AND EVEN THE DR.'S THOUGHT SHE HAD LYME'S. SHE ACTUALLY WAS DX'D WITH REACTIVE ARTHRITIS. IT AFFECTS EVERY MAJOR JOINT IN THE BODY AS AN ADULT. IT IS USUALLY CAUSED FROM AN INFECTION.

[johnflox]

You always get worse before you get better. You can feel progressively worse for 6 months to more than 2.5 years (only in severe reactions, that your husband probably doesn't have). During this period, existing symptoms get worse, and new ones develop. Then everyone tends to get better. The improvement can be quite complete or not, again the lattest reserved for severe intoxications, that leave irreversible, for life sequela.

In www.fluoroquinolones.org you have the expected evolution of the recovery for different grades of toxicity, based in the study of several hundred of cases of victims, very well documented.

I don't understand how a medication that causes hundred of thousands of irreparable injuries that become apparent months after completing the treatment, can be handed out like candy and is not reserved for critical infections or life and death cases.

You can say you are lucky because nearly all victims are wandering around, visiting dozens of doctors each in search for a diagnosis of their problems, only to be told that the problem is in their minds, that they are too anxious, or that they suffer from fibromyalgia or every sort of neurological disorders.

[Flipzoid]

Thanks for all the useful info Johnflox. I don't think that the antibiotics ive taken fall into the quinolone category but I will certainly follow up on this.

I am still waiting for my appointment with a neurologist and hope I don't have to wait too long. However because so many of my symptoms tally with those shown on the Canadian Lyme website I have booked to visit a lyme specialist in 2 weeks time. Unfortunetly I live in London England and the doctor is based in Cardiff Wales (I have to go to a different country to find a doctor that knows about Lyme!!). Obviously it may turn out not to be Lyme but this is one of the best leads ive had so far.

Thanks again,

Mark

[Patster]

Last night I printed all the info from fq.org.  It was amazing.
My husband and I read all of it.  We finally feel very confident that he is suffering  from floxing.  It has taken seven months to find this information. Thank you, sincerely, for your help. I am going to write the doctor at the Mayo Clinic
(we went three different times) and give him the info.

[johnflox]

I am glad you feel confident about the real cause of your husband's illness. If you mean the info at fluoroquinolones.org, just today was updated, but essentially it remains with the same content.
Don't expect too much of the effect of the information that you have gathered. Doctors are very reluctant to pay any heed to information collected by patients, irrespectively of whether it has taken years of research to assemble it to top-notch not medical professionals.
Many floxies have visited Mayo and they have not met any doctor prone to listen to the quinolone "theory". I hope it doesn't happen the same to you. Let us know about your experience at Mayo because it could help a lot of people once the top medical centers are aware of this vast problem.
I would suggest them to call Dr. Flockhart, head of the pharmacological department of the Indiana University, because he really knows much about this problem.

[Flipzoid]

Hi again,

I know the internet can be a dangerous place when trying to self diagnose (it becomes more a case of "what don't I have?!!" rather than what do I have) but I found something else that looks like it could fit some of my symptoms - Cysticercosis. It's an infection caused by the pork tape worm and can cause lesions and neuro problems. The reasons I think this is a posiblity is that it often causes lumps under the skin (I have a smallish lumps under the skin of each thigh) and seems to be quite a common infection in Asia - which is where I was just before I started getting the initial symptoms.

Do you think im going off the right path? Or is anyone familiar with this parasite?

Thanks,

Mark

[Flipzoid]

I don't know if this additional information will be of any use but I just remembered that shortly after the symptoms began I developed what was said to be "Molluscum Contagiosum". This was treated using liquid Nitrogen.

I have seen that a fungel infection called "cryptococcal" can mimic molluscum and can also effect the nervous system. But... I don't really know enough about any of these conditions.

Any ideas? Help!

[CarlW]

Hey, if you have a lump in the same place on both thighs, don't you think perhaps those lumps are supposed to be there? Just a thought.

[Flipzoid]

Hi CarlW...

The lump on the left thigh would at times be not very noticable been then other times be more prominant. It went on like this for a while but now is there all the time. Then the lump started developing on the right thigh as well and now is also there all the time. Sure it could be a coincidence and be something perfectly harmless such as fatty build up but they have never been there before and with the other symptoms I suffer from it makes me wonder if its connected. It does seem strange.

Thanks,

Mark

[giggles4742]

It sounds like your husband is in a lot of debilating pain at a young age, my heart goes out to him as i am 40 and have what they call a Chiari Malformation, it is a rare disorder, but i am wondering if it might be worth you checking it out, the pain you describe, and the Neurologists being un able to find it suggests he might have this disorder, i am enclosing some web sites for you to check out.   www.chiarione.org    and     www.chiari-syringo-news.org    this will give you some information, and if his symptoms seem to match up then you may be on to something, and the only way to find out if he does have this is with an mri of the brain and spine. It's sad but sometimes we have to be our own doctors and do our own investigations. I am 65% disabled now and have had one decompression (brain) surgery, and am going for a second this year, the sad thing is if the doctors would have listened to me three years ago i would have been fine and still been working. My best of luck to you. Kathy

[mrssmr71]

Hi Kathy :
Its strange that you mentioned Chiari Malformation. My middle child (age 14 Boy) has just been recently diagnosed with Chiari Malformation. My youngest child (age 10 girl) was diagnosed in her infant years with Dandy Walker Variant. I am told they are in the same category.
My husbands cranial MRI's do not show any of this. I am at my wits end with going to the neurologist with him and leaving with no dx's.
He is losing more and more of his leg activity as the days go by. My husband has other medical issues such as diabetes, high BP. My son is currently on Periactin 8 mg but still getting Migraines and recently started complaining of stiffness in his joints ( wrist, knees, elbows). Thank you for your info.

[giggles4742]

Did you know that Chiari is heriditary, and your husband can have a 0mm malformation and the only way to find out if he does is to go to the experts, there are not many out there, but only a Chiari expert can find a 0mm malformation.
  The Chiari that your childern have could be coming from their father. check out the Arnold Chiari Malformation site, i belong to that site, and have a support group of my own here in Colorado. This is a very deciving disorder, the loss of use of his legs support the disorder, has he had a MRI of the spine? He may have a syrinx, i do, the length of my whole spine.
  If you would like to e-mail me private, my e-mail is ***@****   just put chiari in the subject box, i usually won't open e-mails from someone i don't know.
  Good Luck, Kathy

[vickixxxxx]

Hi All
I wonder if some one can help me as im very scared. i have has twitches in my body for a while it started in my belly ( thought i was pregnant at one point now it moved around my body. now some times off and on my tongue feels funny like its sort of swelling. i have had the odd twitch in it. When i say twitching in my body it just one twitch not constant twitching. I also get like a buzzing in maybe my ankle and some times my knee. i wake up in the morning and my pulse is racing. i havnt got any weakness at all well i dont think i have. Im just so scared i have got ALS it is destroying me. i cant think of nothing eles im 32 and i have 4 children and i just keep thinking the worse all the time. i get tremors to and some times i get like an electric feeling its not a pain a sorts just a feeling when im sat at the computer mu toes can go numb. the thing that worrying me the most i spose is the toongue thing i read about als on the net and now im conviced i have it. Please can some one help me.
vicki

[vickixxxxx]

Hi All
i also have had a episode of my theig burning and i had to put a damp cloth on um to cool um they dont feel when touch that they are burning they just feel like they are i also get some time a feeling i have something crawling on my skin and i get sharp pains in my head sometimes my eyesand my finger tips. my head also feels thick sometimes im just so scared about this.

[mrssmr71]

Thank You for your reply. Just recently my son had BIG list of blood work studies. One being Lyme and Western Blot results were good -Negative.
Are their other studies that are more accurate ?

[vb]

would you have surgery on c6-7 and if so by what type of doctor

[mrssmr71]

It sounds like you would need a neurosurgeon to look at your MRI films. They would know best !