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Aaron laird

Member
Joined
Mar 17, 2017
Messages
15
Reason
Learn about ALS
Country
Aus
State
Tasmania
City
Hobart
Hi everyone, firstly to describe when this all started I took an antibiotic called ciproflaxin for a persistent headache that my doc believed was sinisitis. Since then I found out this was a bad decision as I had no tests to confirm it and this drug is only used in life or death circumstances. This is also the drug known to cause gulf war syndrome and quite a few that took it developed ALS is response. For the last month I've had trouble swallowing firstly it was just liquids feeling like it didn't all go down my throat and now After a month it's food as well but a new feeling is it doesn't go down the pipe until after a few hours. I nor my wife have noticed any slurred speech yet. So what do you think? Is this typical of bulbar onset ALS?
 
Hi Aaron-

Looking through your previous posting history this past year. Have you seen your doctor about your new symptoms? If so, did your doctor observe any concerning symptoms? Have you received a referral to an ENT specialist?

Your original complaints were about your hands. Did you pursue physiotherapy? If so, what were the results? You were slated for various tests- CT, MRI, etc. Were there any issues? Was there follow up with your EMG/NCV results?
 
Military and probably Gulf War vets have higher incidences of ALS yes. Gulf Syndrome is an acknowledged condition. Quinolones were given to those in the Gulf. Quinolones apparently cause neurological issues. All of this does not add up to those vets developing ALS in response to quinolones as you stated ALS is multifactorial and there was a LOT going on in the Gulf that contributed to the problems we have been seeing.

It is true that quinolones have been associated with peripheral neuropathies that are sometimes permanent.

Your symptoms don't say ALS to me or even necessarily nerve damage. To get an answer you need to see a doctor and get your swallow properly evaluated. Swallow difficulty can arise from many many causes If you distrust the cipro doctor, see another one. Good luck
 
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As a physician, I feel compelled to address some of your concerns about Ciprofloxacin ( an antibiotic in the Quinolone category). Nikki has done a good job of pointing out that neurologic signs and symptoms (such as peripheral neuropathy) can occasionally be associated with this drug, and this drug was given to some serving in the gulf war. However to jump to the conclusion that this drug causes ALS is absurd. This drug is also very commonly given for treatment of urinary tract infections as well as sinus infections, so it’s not just for “Life or death circumstances “. The neurologic symptoms associated with Cipro are in fact very rare (well under 1%).

You have described dysphagia, a fairly common symptom. The overwhelming majority of people with dysphagia do not have ALS. Please see a doctor for further evaluation if you are concerned.
 
Dysphasia per my Dr. is most typically associated with gastric reflux and frequently a cause is not found. I have had periodic difficulty swallowing the past twenty odd years. Mostly, they scope your throat and if that looks normal they don’t invesrigate much beyond that unless symptoms are intense. I should add my issues at mild. Gagging, etc pulse get more attention.
 
As a physician, I feel compelled to address some of your concerns about Ciprofloxacin ( an antibiotic in the Quinolone category). Nikki has done a good job of pointing out that neurologic signs and symptoms (such as peripheral neuropathy) can occasionally be associated with this drug, and this drug was given to some serving in the gulf war. However to jump to the conclusion that this drug causes ALS is absurd. This drug is also very commonly given for treatment of urinary tract infections as well as sinus infections, so it’s not just for “Life or death circumstances “. The neurologic symptoms associated with Cipro are in fact very rare (well under 1%).

You have described dysphagia, a fairly common symptom. The overwhelming majority of people with dysphagia do not have ALS. Please see a doctor for further evaluation if you are concerned.

Hi Karen, I'm entirely going off what I've been told and read I know this antibiotic is a first line treatment in America but not Australia as other docs have told me it's usually only used when nothing else has worked due to its many dangerous side effects. There's also many articles describing how this drug can cause michcocondrial dysfunction and many of the side effects found in gulf war syndrome sufferers which I'm suffering from now, I did read it's been linked to ALS and other neurological diseases from a reliable source. I would like to know how it's affected people in the general population more then just military vets because like what's been mentioned there may have been multiple reasons why many vets were affected. Ive had many symptoms since being poisoned this throat problem is just the newest im just trying to figure out if it's typical of ALS. I'm already seeing a neurologist and the next appointment is 3 months from now. Thanks for your reply.
 
What is the reliable source ?

The incidence of MND appears statistically higher in Australia than the US. Some may be reporting, a miniscule amount may be PLS would be counted in Australia , not here, but neither would account for all of the difference. If it is true quinolones are prescribed more here and quinolones are a risk factor one would expect the opposite.

I have been and still am in genetic studies. One of the things they do is track possible environmental risk factors. They ask everything including meds taken for a certain length of time. A normal antibiotic course would not be captured and it is not in their special list of what they consider known or possible risk factors. That list includes military service, contact sports, living or working near contaminated water bodies, pesticide exposure and more. The questions are extremely detailed and comprehensive. If the researchers had any concerns they would be asking

There is a lot on the net that is partially true or even completely false that looks reliable. I don't know where you have been reading to evaluate your sources. Are there problems with quinolones yes. Is there research that supports your assertions re ALS? I can't find it.

I note you chose not to respond to Fiona's questions about your emg and other tests
 
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In the US, Quinolones (such as Cipro) are considered first line for treating urinary tract infections in persons allergic to sulfa drugs or for UTIs with bacteria resistant to sulfa.

In nearly 30 years of medical practice I cared for hundreds of patients on Quinolones and rarely saw problems with them. No drug is without potential side effects, but I’ve yet to hear of a drug definitely linked to causing ALS. If I am wrong, please educate me, and cite references.
 
May I just highjack a moment here to say I love having an MD/PALS here? The clarity you bring Karen is fabulous.

I actually think it would be a step forward if we knew of a med linked to ALS, but I also know that no med has been linked. If one did exist it might help in our whole understanding of the disease.

There was a brief flurry about statins.I think that ended about the time people realized that those most likely to use statins (people over 45) were also the largest group of ALS patients.

To the OP, I know health anxiety because I have experienced it, but swallowing difficulty = ALS? That’s a big stretch.
 
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Hi Aaron-

Looking through your previous posting history this past year. Have you seen your doctor about your new symptoms? If so, did your doctor observe any concerning symptoms? Have you received a referral to an ENT specialist?

Your original complaints were about your hands. Did you pursue physiotherapy? If so, what were the results? You were slated for various tests- CT, MRI, etc. Were there any issues? Was there follow up with your EMG/NCV results?

Hi thanks for your response, I have had an MRI which showed small vessel disease but didn't explain my symptoms I also saw the ENT but nothing was found. I have another appointment with the neurologist in Feb so I'm hoping for good news but going from the way I'm feeling I'm afraid it won't be the case only time will tell.
 
In the US, Quinolones (such as Cipro) are considered first line for treating urinary tract infections in persons allergic to sulfa drugs or for UTIs with bacteria resistant to sulfa.

In nearly 30 years of medical practice I cared for hundreds of patients on Quinolones and rarely saw problems with them. No drug is without potential side effects, but I’ve yet to hear of a drug definitely linked to causing ALS. If I am wrong, please educate me, and cite references.

Here is one such article

Rx warning: possible mitochondrial toxicity

I hope in my case it won't cause me serious harm like it has others and recover from what feels like poison though it's been many months now.
 
That is a press release. The paper mentioned apparently was never published. Press releases are often extremely inaccurate. I have read them and the paper they are talking about and found this happen. This is not research documenting causation - not by a long shot

The mentions of ALS and other diseases reported to the FDA are anecdotal and associations. This is in no way proof of causation. It means someone said they took quinolones and got ALS. Other people probably took them and got hit by a car or won the lottery

If you looked here ( which I don't advise) you would find PALS asking if various life events triggered their ALS. It is very common to try to find a reason so if a PALS took a medicine, had a procedure or surgery they often see a link. That does not mean causation Of course we were all living our lives before ALS appeared so some of us took medicines

Yes cipro and other quinolones have some nasty potential side effects but I still find no proof of ALS being a result. You can believe what you want but when you present unsupported statements it is important for us to explore them because unchallenged they will be repeated by others who will say but I saw on the forum.....
 
Time will tell I'm predicting it to be revealed and made well known very soon, since I was incompetently prescribed that poison it's been banned for mere sinus infections and next year it will be taken off the market completely. I'm still hoping though I can recover from it and not get anything severe like ALS, I'm 33 I would hate for my life to be cut short at this stage.

Aaron
 
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