To make a long story short, I've been suffering for something here for the last 3 years. It was originally diagnosed as some kind of stress / anxiety disorder, which I thought was probably not right at the time, but since a heavy dose of the medications Xanax and Klonopin eliminated my symptoms for a time, I guess I came to believe that I must've been diagnosed correctly afterall. Of course my symptoms were so severe and I was only really mildly stressed, so it never really made sense to be. Anyway my symptoms have now returned yet again, but naturally even worse than ever.
My symptoms include the following: (1) numbness in the face, scalp, chest, and limbs (on both sides equally); (2) neck stiffness; (3) general disorientation and very clouded thinking.
While the symptoms were totally gone when I was taking those medications, I am becoming increasingly convinced that it was never actually anxiety in the first place. As my medication has now begun to loose its effectiveness, it is obvious to me that my symptoms are actually worse then they were before I even started taking the meds in the first place. I have less stress in my life then ever of crouse, and in fact I haven't even been "stressing" about my symptoms because the meds definitely do seem to eliminate me needless worrying about something I can't do anything about. And yet I would still like to know what's happening to me obviously. I'm still on Klonopin, but the effectiveness is beginning to come to an end here after taking it for about 9 months, exactly like the Xanax did before it.
By the way, I have undergone numberous tests all to no avail. I have recently come to the conclusion that I have a virus of some sort, but am not certain about this. The only other idea I had came up with was when I overheard someone talking about numbness as a possible side effect of the drug Cipro (which I took a few years back for about 6 months related to an infection - not anthrax paranoia). Of course numbness is not listed as an side effect for Cipro and my doctor had never heard of that being a side effect, so I wrote that theory off as just a weird coincidence.
Anyway, if anyone has similar experiences, particular with extreme numbness, I would very much be interested in hearing about it. Of course additional theories or comments are also welcome too. Thanks!
[This message has been edited by Lucky4Me (edited 09-26-2002).]
Thanks for the responses. Good suggestions, but unfortunately I just saw a neurologist just prior to posting my original message. I've already had a lot of blood work done, had a x-ray of my neck, and an MRI of my head, all about a year ago. None of those tests turned up anything unusual, which is why they slapped that catch-all "anxiety" label on me I guess. But then when I actually responded to those anti-anxiety medications I almost fell over, and for quite a while I thought that diagnosis must have actually been right (which just shocked me because I would say I'm generally less stressed than the average person). But now with my symptoms coming back as my tolerance of Klonopin has been built up, my psychiatrist has begun to express doubts about my original diagnosis and might send me back to internal medicine (where I started out by the way).
The neurologist that I saw really just looked at the tests that had already been performed on me, and then just checked my reflexes, made sure I could walk in a straight line, did follow-my-finger, and the scrap the bottom of my foot (MS test). He concluded from my five minutes with him that my problem probably wasn't neurologic in nature. Or at least that wasn't the root of my problem. I don't know. To be honest it's about what I expected. While the Klonopin is beginning to lose its effectiveness, my symptoms are really only beginning to return. I thought getting in there before it got really bad again would be the way to go, but apparently not. Apparently I have to be back in a fog so bad that I can't focus on what people are saying, or have the numbness so bad that I can't tell the difference between a pin ***** and a finger on my forehead, or have major chest pains again here before they'll take me seriously again.
Anyway they've long since ruled out MS, Diabetes, Lyme Disease, and a bulging disk, among other things. So here I am left to just wait it out. I'm not going to "stress" about it, because I can't do any more than I've already done. I'll just wait and see I guess.
Thought maybe I would get lucky and find someone out there who might have some answers for me.
Just a follow up question to my original posting...
Does anyone happen to know what the drugs Xanax and Klonopin are used to treat besides anxiety?
I mean I know that Klonopin is also an anti-seizure med, and that both can be used to treat anything from general anxiety to traumatic stress disorders, but I'm looking for something not along those lines...
Hi Lucky !..
As one who had the same type symptoms 10- 12 years ago as you, I had to tell you that I fully understand your confusion, but I discovered ,as time went on, that Drs and Neurologists don't like to diagnose MS immediately , as it can mimic so many other illnesses, so they tend to wait for more various symptoms to occur before commiting themselves to tell you .
I have many MS friends who have been so frustrated for perhaps 1 or more years to get the truth from their Drs , and it becomes such a relief
( which seems so stupid, but it is so true!)) to be told you are not imaginig these things ,
- it's not anxiety ! ,
that it is a real thing happening to your body !!
and You have no control over it ,
nor is it your fault!!..
I had only a bad pain in my eye (optic nerve) for a short time once, and a bit of Vertigo, ( dizziness ) and that was all, but my Dr already suspected MS ,but never told me ..
then a year later I had a numb tummy in a band around my waist ..shrugged my shoulders as I was busy Xmas Shopping for kids..
then about 3 weeks later had numbness on left hand fingertips , which crept up arm slowly then numb patches on legs,dropping things , and fuzzy heads , words coming out wrong when speaking etc.. ..
THAT'S when I really knew something was wrong!.. Looked up encyclopaedias , rang the MS Society , they said " Go to your Dr and demand .. Ask for the TRUTH!!..
I did , and she had to tell me( nervously!) , she believed I had MS..!! I was so relieved !!
Years later MRI scans have shown Lesions .. as far as the MS goes I am good at moment but it can possibly come back anytime ..
I've had other spinal problems and ops, nothing to do with MS..
I am not saying you have MS , but so many things seem familiar, but then again , there can be so many variations of illnesses, maybe that's why they can't answer you yet ?
So, I hope you keep persuing for answers ,.. like I did .. MS Society said I had a Right to Know !!
..So do YOU!!! Good Luck!!..
Belle NZ ,,, xxx
Read you reply and it supprised me. I also had those same issues: Foggy Brain, Alot of memery loss, eye sight problems,tremors, numb in many places. My Nero did a brain mri and it showed a lesion in the optic area. Thought for MS they looked for plak in the brain. Anyway, he kind of dropped the MS conversation and went on to other things. Said we would repeat the test in three months. I also have many different medical problems Cronic pain, FM, DDD, and depression. I have thouht that my mental capacity loss was due to all the medications. I am 46 and this month I lost my ability to spell and loss alot more words that I used to. Really Scared. (sp?) lol. Sounds like I need to talk to me nero again about MS.
As far as my own situation goes though, I've been told by three different doc's that it is "definitely not MS." Which I never actually thought was a possibility in the first place, but I guess it's nice to be reassured. My MRI was totally clean apparently, and I've never had (knock on wood) any eye problems or weird pain or burning sensations, which I guess are often associated with MS. And my reflexes are good and I react when they tested the bottom of my foot (which I guess is some kind of MS indicator).
Anyway, I've received an education on the symptoms that are associated with several diseases that I previously knew nothing about. MS, Diabetes, and Lyme's disease apparently all can have numbness, and foggy thinking associated with them. But in my case they've apparently ruled all three of those things out. So, what's left? Well if my doctor's knew the answer to that question I guess I wouldn't be out here trying to figure out the answer myself.
Like I said , There are so many illnesses that mimic MS, and other diseases, that it is so hard to say what it could be for sure !.. and in your case you say the Specialist has ruled MS out which is great !.. I really wrote that on there as it might help someone else to know if they saw similar symptoms, as I had NO ONE to ask , in my case , and searched till I found Answers and Mentors to help me , myself !!
Thru talking to so many people WITH full MS, until they had an MRI Scan done, so many all said the same thing ..
The Dr wouldn't tell me what was wrong ..
gave vague answers .. avoided getting in too deep.. etc..
My GP did tests on me , -pin pricks , all the usual kind,etc, then, -as I was leaving said -
" What you've got wrong with you won't kill you!!"
It wasn't till I got out the door I thought .. " What was she saying won't kill me ?!!"..
About 3 weeks later I was back with more symptoms and DEMANDING an Answer !!..
I was not given a Scan for 10 years after the symptoms first began, as my symptoms all faded away quite quickly , and where I live our city could not afford a Scanner till later..
When I had the MRI done in 1999, due to numbness and other problems,( of course , BLAMED on Ms,.. YES.. The MS plaques and Lesions showed up alright .. in my brain, down the spinal cord etc ,
the problem that was actually happening at the TIME right NOW , 1999, shocked the pants off the Specialists !!, was NOT MS.
but a massive pile of Calcification squashing my Spinal Cord ..
affecting my walking and everything you can think of !!..
If you go to Spinal Cord Disorders posts for the last few months and look up Belle's posts ,( and others posts to me, you can see what I've been thru !..) So , MS is kind of irrelevant to me at the moment ..
I'm just trying to learn to walk again after the 3 ops in 3 years on my spine !..
Any way , I hope maybe this vent may help someone NOT TO GIVE UP for Answers from Drs..
It has taken determination to get to where I am at now ..
So Good Luck to you All!! http://www.healthboards.com/ubb/love1.gif Belle NZ xxx
Well, I feel for you Belle. Thanks for sharing for your story. I feel like I'm heading down that same road as you here I must say.
It's funny that if it's not "life threatening" the doctors just seem to shrug their shoulders and play that waiting game. I guess maybe there's nothing they can really do, so they figure what's the difference. Only the peace of mind in knowning what it is your facing would sure be a nice.
I'm curious though Belle, did you ever take any "anti-anxiety" type medications? And if so, did you respond to any of them? My psychiatrist is beginning to believe that I maybe responding to some of the higher potency meds for reasons that may actually have nothing to do with anxiety. She thought neurology might uncover some other physical aliment of some sort, but they just did their basic tests and sent me on my merry way.
I say that because it sounds like you have fallen into the "lets wait till the symptoms are incurable before we diagnose" trap.
Well.... I think you could be having an adverse reaction to one or both of your medications.
Xanax is an anti-anxiety drug. It can cause dizziness, perceptual disturbances, photophobia, confusion, parasthesias, sweating, drowsinness,light-headedness, tremors and tachycardia.
It has also been known to cause de-realization, headache, chestpain, increased bilirubin, vasomotor disturbance.
It can also cause pshychological side effects ranging from irritability to psychosis.
It is an addictive medication.
Liver enzyme tests should be conducted when using this drug.... as, it is metabolized in the liver.
Klonipin is an anti-seizure drug. It lives in the same family as lithium and valium.
It can cause many of the same effects as the Xanax
and additionally: decreased attention span, sedation...
nausea, headaches, upper GI disturbance, and it too can be very addictive.
This medication is used to treat akinetic, absence and myoclonic seizures.
One drug or the other is usually prescribed, not usually both together, with liver enzyme tests and extreme caution.
The fact thqt both of these cause such side effects, it would be difficult to know which one is affecting you, if not both.... and I would imagine you are experiencing twice the amount of side effects than normal.
Your numbness could be isolated, or it could be a rare side effect of the medication.
BOTH ARE RESPIRATORY SUPPRESSANTS..... so I am not surprised if you are having difficulty breathing.
DO NOT stop either of these meds abruptly.
YOur side effects could turn into full blown seizures with the Klonipin, (if you are not having these already).
Please tell your doctor about these symptoms you are having.
It sounds like the meds are magnifying an underlying condition.
Ever hear of optic epilepsy?
Has your doctor tested you for epilepsy?
How about your blood coagulation?
Please let me know how all turns out!!!!
PS Just as a side note, I empathise with you deeply that your doc medicated you rather than finding the problem.
Just to clarify though, I was never on both Xanax and Klonopin at the same time. I guess I wasn't clear in my previous messages. Originally I went into the doc with numbness, stiff back muscles (especially in the neck area), clouded thinking, weird headaches (probably from the muscle stiffness I think), and some chest pains.
Those were my symptoms before I was ever prescribed Xanax.
That particular medication worked to eliminate all my symptoms once they prescribed it for me though, so it was assumed that anxiety/stress must've been the cause of all my problems (even though I tried to tell them that I really didn't feel very stressed out). Anyway taking Xanax twice a day, every day, really worked for me until my tolerance built up after 10 months using it. They had wanted to get me to cut down on it over time, but that proved impossible because my symptoms would begin to reappear immediately if I attempted to cut down. Eventually though the Xanax just stopped working for me, at which point they switched me to the Klonopin. And for the next 8 months I again had no symptoms whatsoever. But anytime I tried cutting down, just like the Xanax before it, my symptoms would come back again. I'm now to the point that the Klonopin is beginning to fail me, and my symptoms are again coming back. My tolerance has built up to the point that it just doesn't work for me anymore. Anyway, my psychiatrist now is beginning to think (just as I always kind of suspected), that my symptoms do not actually stem from anxiety or stress. Those type of drugs definitely worked to eliminate all my symptoms, but she is beginning to think it's not for the reason they thought. Anyway, she sent me to neurology just to get their input, and of course the doctor I saw there said, after some very basic tests, that I should just continue on with my psychiatrist and that he didn't think my problem was neurologic in nature (or something to that affect).
Anyway, I've never had a seizure in my life so I'm not quite sure why they would want to test me for epilepsy. And I'm not sure what blood coagulation even means, but I do know that my blood pressure is very good, or so I've been told. No breathing problems either.
As far as the side effects of those meds go, I think I probably know them far better then the doctors who prescribed them for me. I can tell the difference between the side effects of the meds, and my original symptoms. It's actually pretty easy for me to discriminate between the two.
Anyway, there's not a lot I can do anymore. I don't know what the problem is. All I know is that I was totally healthy and never went to the doctor before I came down with prostatitis and they prescribed about 10 months worth of antibiotics for me. I can't be sure, but my guess is that the drug Cipro, or a combo of Cipro and something else, maybe ultimately responsible for what's happening to me now. I found some bits and pieces of information on the internet from other people which has lead me to that conclusion, but none of my doctors seem to be aware of any neurologic problems that stem from antibiotics. I told them I've found testimonials on the internet...but they just reference the manufacturer's side effect guideline list and tell me that it's not on the list!
"Of course it's not on the list," I think to myself...."would anyone take Cipro if it were?!!"
Lycky4Me, I just read your last post and your symptoms ALL point to a problem in your upper back and neck. Go back to your neuro. and tell him your symptoms, and ask to have your trigger points checked. This is a very commonly missed condition that causes all these symptoms. Dcotors and even specialists don't think to check this most of the time. And these areas must be specifically checked ( hands on by the neuro. ). I had all of these symptoms after a car accident, and they stemmed from severe muscle strain in my back and neck. You do not have to be in pain or have any back or neck symptoms for this to be the cause. You mentioned your stiff neck, and these muscles, when strained, put pressure on the blood vessels supplying oxygen to the brain. This is a very commonly overlooked cause, of dizzy spells, light headedness etc. Read in the " Brain and nervous system disorders " the posts by rgraf8. He was diagnosed with menieres a year ago. He went to his neuro. recently and told of all his symptoms ( dizziness, lightheadedness, numbness etc. ) and the neuro. specifically checked certain areas in his back. These areas were in severe spasm ( rgraf8 had no idea they were ) and told him this is what was causing his symptoms all this time. He is now being referred to physical therapy, and the neuro. said his symptoms should disappear once these trigger points were taken care of. This also explains why some of your meds. seemed to help, even though you didn't think you were anxious or under stress. They relax the muscles, but are only temporary, because you have to live on them, where with therapy, it gets to the cause of the problem in the first place, rather than taking care of the symptoms. Please give the neuro. one more try to just check these areas out. Looking at an MRI and x-ray will not show them.
Hi There Lucky 4 Me!!
No I never ever took any meds for Anxiety or anything in my life and was always healthy until 10 years ago when the MS diagnosis popped up!..
I only had symptoms of MS for about 2-3 months ,during which time I did some Natural Remedies which were amazimg , and was running around so good no one believed I had MS!..( Yet recently Specialists did tests and said I actually have it, but it is not " doing anything bad to me"..Wonder if they would believe my Remedies I did?? I doubt it !!!)
Never had any further Symptoms after that till 8 years later, in 1999, these numb feelings began and again MS was blamed ... till the MRI Scan showed up all the mass of Calcification squashing the Spinal Cord !I KNEW it wasn't MS this time !!
So, You have to do all the Detective work yourself a lot of the time !!..
I have for years and still am right now L4Me!!.. So good Luck Love ..
Go for It !!.. Belle NZ xxx
Well, I think I finally have an answer to my problem.
The funny part though is that I actually think I'm going to have a problem convincing my doctor that I'm right! Of course I had to figure it all out on my own, but hey...isn't that what modern health care is all about?
Well, unfortunately it certainly seems like it. So many people seem to get that "anxiety" label slapped on them without even asking if such an diagnosis really makes sense!!!
..sorry, I'll take an anti-anxiety pill here and calm down...
Kidding of course. Seriously though I have to watch people hiding behind giant tarps at the gas station in Virginia, afraid that they're going to die at the hand of a sniper, and they think...I...have anxiety problems! Nevermind that those people should probably be a teeny tiny bit more concerned about just driving home safely. Statistically speaking I think you're actually more likely to die of anthrax in your mailbox than at the hands of a sniper, but I could be wrong...
Anyway speaking of anthrax, has anyone ever heard of the drug Cipro?
Yeah well, I have.
I was prescribed boatloads, and by that I mean like 4-5 months worth over the course of a year. It was for a possible infection that my doctors thought may have been the cause of my prostatitis.
Well, my most mild symptoms just happened to begin when I was taking Cipro. Which at the time didn't really seem to be caused by the drug. I had some neck stiffness, pain in my knees, and just a hint of numbness from time to time. I never would've connected my symptoms to the drug at all, had the symptoms not gotten worse, and had I not finally come across some of the side effects of Cipro that they don't tell you about!
Over a year ago, at the height of the whole anthrax scare there was an article that appeared in the Wall Street Journal describing the bizarre side effects that some nationally renowned doctors had been seeing in the class of drugs called fluoroquitolones. Cipro is a member of that particular class of drug you see, and since it was the drug of choice to fight anthrax some doctors wanted to get the word out about some of the serious side effects that weren't (and still aren't) very well known to the medical community, nor the general public.
Well, the side effects apparently are bizarre because they're not the usual sort of side effects that doctors are use to seeing, and they don't quite behave in the usual way. By that I mean, you take a medication, experience a side effect...then stop taking the medication and the side effect goes away. Yeah well, guess again. Many of the side effects from this particular group of medications can happen long after you stop taking your prescription, and probably will be so seemingly unrelated that you won't even make a connection between the drug and your symptoms.
Anyway, to quote the article "as many as a third of patients taking a fluoroquinolone will experience some sort of psychiatric side effect, such as anxiety, personality change or confusion." Side effects can include a lot of things that are apparently typically associated with anxiety, as well as some other rather severe side effects such as seizures and tendon ruptures among other things.
The main problem apparently is that drugs like Cipro can quickly reach high concentrations in the blood, and thus also reach high concentrations in the brain. And apparently once high concentrations in the brain are reached, the drug can do permanent neurologic damage.
I'm pretty sure I didn't read any of that on the list of side effects when I was taking Cipro!
Anyway this article is now over a year old, and the medical community is no more aware of these problems today then they were back then. Why? Well, because of the drug manufacturers of course! Many of the drug companies are apparently adopting the tobacco industries old defense in lieu of actually getting some of these new poisons off the market.
Severe long term side effects?....we don't know. We just make it. We're not aware of any long term effects that have actually been proven to be caused by our product.
Meanwhile they get rich, while turning a blind eye to nationally recognized doctors who insist that their medications are doing a lot of permanent damage to a lot of people!
Remember that the next time you see a drug commercial on prime-time TV.
The whole spinal tap thing sounds like a lot of fun, so I may ask for one just for the pure enjoyment of it.
By the way, I want to thank Kamden for your response. While I don't think "my trigger points" is the direct cause of my problems, I do think that you're right on the money about why the anti-anxiety meds are actually working for me. They do totally relax my muscles and I think the tensing of my muscles is in fact the cause of the rest of my symptoms, including both the numbness and the clouded thinking. Some of the muscles are probably causing a somewhat severe blockage of blood flow through my body at some particular place.
Anyway, the muscle tenseness is not just confined to my neck though. My whole back feels like one big muscle knot. My jaw muscle aches. Just all over my body my muscles appear to be tensing up for no reason whatsoever. It's definitely not stress related, nor related to a back injury, or anything like that. I think it may very well be related to something called...
After reading this long list of posts and relating to many of the symptoms, especially the numbness, dizziness, cloudy thinking, knots in the back/neck, ect., I really believe you have all left out one option. To find out that option you need to read the book that saved my life. It is called "Mindbody Prescription" by Dr. John E. Sarno. He is the chief medical doctor at some very large rehabilitation medicine clinic back east and has 25 or 30 years of experience with patients that have unexplained pains, numbness, and a lot with back/neck pain - chronic, some have had pain for 10-20 years and he has helped them. He explains a condition called TMS, tension myositis syndrome, which is caused by the repressed emotions (which we all have). You are not even aware sometimes. They can be in the unconscious mind. These "repressed emotions" (don't get hung up on the terms, be open minded) cause mild oxygen deprevation to different parts of the body and then cause pain, numbness, weakness, dizziness, all kinds of weird malodies (TMS) I had most of them. I had been seen my many doctors who all wanted to give me pills. I had LOTS of tests which were okay.
I was very skeptical at first but a friend convinced me and so I read it. In fact I read it three times. Starting after the first time I read it many of my symptoms started to diminish, now after a couple of weeks, they are gone. It is hard to explain, just get the book, 10 dollars, used copy. It is worth the risk, even if you are skeptical. He has helped thousands of people!! He is not a quack. Give it a try. Don't give in to every diagnosis the docs give you. It can be a self fufilling prophecy and your symptoms will get worse sometimes after they tell you a diagnosis. Then fear sets in. The mind is very powerful.
Get the book Mindbody Prescription by Dr. John Sarno. He has also written "Healing Back pain" which I have also read, great book also. Good luck Rae
Rae, I bet that book would help many people in the Brain and Nervous systems message boards also. I am going to read it too, it does sound very good. I have always known there is a huge mind body connection. Thanks
I was just scanning some of the forums and yours caught my eye. I am sorry you are having a tough time getting a diagnosis and wondered if you have ever had a medical intuitive reading before.
There is a woman called Mona Lisa Schulz, she is a medical doctor specializing in the brain and also has the ability to scan your body in order to find not only what your illness is, but also what is causing it. I speak from experience, not from heresay and am not some new age head in the clouds type of guy.
She has a fantastic book out called Awakening Intuition. She works with a very popular womens issues gynecologist called Christiane Northrup. Both have done the talk show circuit, but I sought out Mona Lisa for problems I was having that could not be diagnosed. She was amazing, and if you have exhausted other avenues and doctors, perhaps my posting is not a coincidence.
I am not associated with her in any way and have no reason to tout her service other than it worked and many people would have thought I was crazy to try it.