I wanted to open up a thread that would maybe shead some light for myself (and possibly others) on a perplexing feature of the "attacks"!

In my life i have noticed two types of attacks. the "real" and the "psychological"!

The real attacks are extremely terrifying (as are the psychological - just in a different way).

i find that during the "real" attacks. I don't remember much afterwords except that feeling of extreme terror! Now what i mean by that is during the "real" attack I feel extremely disoriented, anxious, and i have absolutely no control over what is happening! Meaning I can not voluntarily make it happen, nor can I do ANYTHING to make it go away! Which is very terrifying!

some of the sx of the real attacks include, severe and irretractable double vision (usually but not always with eye pain, if it is present it is on one side), dizzyness, severe balance issues, muscle weakness, and sometimes breathing difficulties, oh and disorientation - i guess ya'll would call that cog fog?

I had a "real" attack on December 20th of 2007. I had had minor surgery w/o any out anesthesia (upper endoscopy). It was a very physically and psychologically stressful experience. I felt fine immediately after the procedure, but things deteriorated from that point on ward.

The first thing that i noticed was intermittent but severe double vision while i was wating for my ride to come back and pick me up, this started about an hour after the procedure.

By the time i got back home, i could not see (severe double vision that was constant at that point) of the variety that had severe eye pain on one side - don't remember which side but i think it was my left side. I also became very weak and collapsed on the couch and that is where i stayed for the next several hours (based upon what time it was when i periodically came back around).

At first I was talking to a friend of mine whom had driven me to the procedure. But I don't remember anything much about that conversation, except that i was in a lot of pain and was very out of it. He unfortunately had to go to an appointment (he is a neuropsychologist and had patients that morning). So I was left alone in my apartment. After he left, I don't remember a whole lot about the next few hours. I just know that i was struggling to breath and fighting to stay conscious.

The only thing i remember so briefly but so clearly is one of the times that i was dipping in and out of consciousness i reached down to pick up my cell to call him (as per his instructions if i got worse) and i lost my balance and fell off of the couch in a heap on the floor. I managed to get enough strength to lift up my head and look at the clock and from there...NOTHING... for the next two hours.

When i came back around, i couldn't move, except for a little bit of head movement, and I was still having trouble breathing. after about 15 or 20 min by the clock i finally managed to pick up my cell and get my hand near my face to call him. He couldn't get away at the time from his patients but he advised me to call 911.

I did, which was scary in and of itself b/c I had never called 911 before. by the time the abulance came i had mananged to unlock my door and lean against the couch. It was terrifying. I don't remember much after that point b/c I was sooooooo out of it.

in the ER i was coming and going in and out of awareness, and was breathing extremely shallowly. In fact when they did a bed side test of breathing, I remember the doctor gently saying, come on, breath, and the test couldn't even measure how little i was breathing b/c i was so weak! I remember him saying that it was creating an error message as not enough air being measured (we played the "comm'on breath game, about 6 times and each time i was off the charts on the low end)!

Needless to say they admitted me to the hospital and the next 5 days were a huge blur! Oh and they put me on a bi-pap - covered my mouth and nose - breathing machine (one step below a ventilator in ICU).

The 5 day stay wasn't the same kind of blur that the first day was, but I was sooooooooo anxious after i got over the initial exacerbation that my memory of all that followed was cloudy. I do remember though not understanding why i was there, or what put me there. All i knew is i was very ill and in an unfamiliar place that i didn't want to be in.

That about sums up the "real" attack for me. (this was by far the most severe attack that I had ever had!)

Fast forward... I had a "psychological" attack just a few days ago before my period. (hey gals, do you just LOVE that pre-period exacerbation we all get?) Oh that was FUN! NOT!!! Anywho, I was very anxious b/c i had just had some major changes in my life. I had been uprooted from the town that I loved, with all the friends that I had in the world, and had just had a tough resignation from a job that was my pride and joy (due to the variety of lingering physical probs from the "real" attack in December). On top of that, i was still having some residual double vision (even though it has been 2.5 months).

Well, it has taken me this long to understand and wrap my mind around some of what happened during the "real" attack and even as recently as a few weeks ago, i didn't have a clear picture on what had actually happened. I lived in absolute terror of another attack b/c I didn't understand why I had that attack in the first place. All i knew for sure was I was fine that morning and in the hospital by that afternoon on a breathing machine in ICU!

this is getting rather long so I shall only briefly summarize the "psychological" attack that happened during the week before my period.

I have been afraid of another attack ever since then so my body has been on hyper-viglant mode to every little twinge of anything. Well the previously mentioned stress got me pretty badly. I was very anxious prior to the week before the week of Ick!

but that week it just exploded into a whole slew of nonsensical symptoms. things like persistent double and blurry vision - that was not accompanied by pain, muscle weakness yet the muscles were very ridged, severe balance issues, even when i wasn't having to bad of double vision, cog fog, anxiety (severe) and of course what i guess would be the "hug" (tightness that gives the sensation of not being able to breath) around the chest that ya'll refer to. I'm guessing that is what it is, b/c i have never experienced that before this time. Oh and that lovely pins and needles sensation when I tucked my head down.

Of course by the time that i went to my new neurologist it was the night before i started my period (though i didn't know it) and most of the muscle rigidity had subsided, as had the "hug", and the ability to feel the pins and needles sensation down my arms when i tucked my head forward.

The new neuro's conclusion. She's crazy! (don't you just love it, it's all in my head)! That was also the determination of my neuropsychologist friend, i wonder if he will still say that when he reads my link to my post?

Has anyone else out there had these types of experiences?

so yeah, i know the above post is really long, but the short version of my story is this:

Has any one out there ever noticed that a "spontaneous" attack has a different set of sx than a "stress induced" attack?

: )

i believe the term you may want to look up for more info is

" pseudo exasperations"

someone somewhere, when we posted about this subject matter elsewhere had a link to a really good article about pseudo exasperation, hopefully i am spelling it correctly, not sure if this will help any, will say only good thing about the pseudo type is the length of duration is a lot shorter

Pushing myself too hard, extreme hot and cold temps outside, stress, and being sick - these all make some of my symptoms worse. It's one of the funs associated with MS.

Psuedo exasperation is the term for it.

I don't recall your history, but the explanation of your first "real" attack is not in keeping with a "normal" first attack of MS. The combination of double vision, dizziness, and severe breathing problems sounds very, very serious . . . but it just does not smack of the first indication one could have of MS.

If the breathing problems were because of MS, that would be combined with some other tell-tale symptoms. Breathing difficulty is not normally a stand alone symptom, without significant spinal problems combined.

If that was MS, I think your explanation of what happened is BY FAR the worst experience I've ever heard of with all my years on the forums.

The second episode you've described, does sound much more like what we might experience in an attack, but most often this would last for several weeks to months.

Your description is extreme and excessive to how most would describe their psuedo exacerbations. Normally a psuedo exacerbation would include ONE or TWO fluctuating symptoms (fatigue, patches of numbness, etc) which will go away as soon as the stressor is removed (and definitely within 24 hrs). Psuedo exacerbations do NOT include any NEW presenting symptoms as it is not true disease activity or progression occuring.

I would hate to see you thinking this is "normal" MS-type stuff going on ... it is NOT. Your health problems seem very serious to me and I would not be satisfied with the medical community brushing me off as it seems they have done. It may very well be psychological, BUT have they done EVERY test there is to rule everything else out; MRI's, lung tests, heart tests, etc.?

Cherie

I had double vision and diziness as my first symptoms and was dx with MS three weeks later.

The breathing difficulties were not happening then but they are now. Much better than they were a couple of weeks ago and this is the first time I've had difficulty breathing since my dx.

I had pseudo exacerbation symptoms during the week my sister died. It was a horribly stressful time for me - I had a houseful of company, everybody wanted to be on the "go" constantly and all I wanted to do was sleep. That psuedo exacerbation lated five days.

I'm not sure there are any "guidelines" we can go by when it comes to MS - everyone is different.

thanks for the feedback. I really don't know what it is, but i wanted to post it here first, b/c I'm still trying to figure out what is going on, (aka am i crazy or is this real?) I'm not saying is MS, i just was wondering does it fit with MS, I guess not (which is a good thing to know).

I wanted to get forum feedback b/c I didn't want my neuro to have more fodder to think I was just making it up. I don't know how to describe it. One complicating factor was high doses of a medicine that i should not have been on for a disease that they thought i had but when finally tested for it turned out that i didn't have! I was comming off the medicine during the past few weeks and i had previously been on high doses of it so it is hard to tell what was causing things.

Hopefully for me, the sx will even out now that i have gotten off of that medicine. To be honest I'm still in guessing mode as to why i was in the hospital. I have so little clear memories of things b/c of the extreme stress that I'm just kinda feeling around in the dark.

I guess the best thing to do would be to get the MRI, see where that goes. and then just see what happens now that my eyes have stabilized and i am off the meds that I don't need. If i have any more flare ups then go back to the neuro, otherwise i guess i just won't worry about it and try to go on with life.

What medication were you on? Is it possible that you were having withdrawal symptoms? Weaning yourself off of some medications can cause anxiety and panic attacks. Stopping some medications without weaning yourself slowly off the medication can cause some serious withdrawal symptoms.

I was on mestinon at high doses. Mestinon is an anti-acytalcholenesterase inhibitor (meaning it stops the break down of Acytlcholene). The neuros think i was having significant withdrawl sx from the sudden discontinuation. I don't disagree. I sure hope that is all this is!

My hands are very numb, so it is hard to type long responses . . . but I will try to touch on the important parts.

I guess the best way to make my point is to ask if anyone here has ever experienced the MS hug to the point of drifting in and out of consciousness? And, was it necessary for them to have needed to be put on a ventilator for several days?

If the answer to that is “yes” for anyone (which I doubt), then I would ask, “was that the only presenting spinal lesion symptom at the time?”

I guess it’s not entirely impossible, like anything with this disease, but I’d be surprised if anyone has experienced this . . . and then for their doctors to have not bothered to follow up with a MRI, LP or any other test that would rule out menningitis, etc. Even WITH an MS dx, my doctor would have been testing for everything under the sun!

There are variances in symptoms for each of us, but that does not make the entire disease process a gray area of guess work. While it might seem that there is just a hodge-podge of events occurring, there are fairly predictable patterns with some aspects of this disease. There are also clear “guidelines” on certain aspects, like “what is an attack?” and “what is a pseudo exacerbation?”.

For instance, they can often tell which lesions are likely to be causing the problem; brain or spinal. And, unlike brain lesions, spinal lesions do cause very specific symptoms. In fact, even without a MRI, our specialists can determine where in our spine the damage is, depending on our presenting symptoms.

The hug, which can cause breathing difficulty, could be as a result of a pseudo exacerbation (due to over-heating, etc.), or it as part of an attack. However, the hug is a symptom of spinal damage/lesions and requires that we have damage in this area (not the brain).

It is a sensory symptom (paresthesia), and occurs as a result of a spasm in our intercostal (rib) muscles. While it may FEEL like we can’t breath or like we are having a heart attack, it does not actually impede our breathing. In and off itself, I am not aware that the hug can cause us to go unconscious or require that we go on a breathing machine for five days. That is why I am particularly concerned about Bob’s experience.

http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

The definition for an attack is:

“To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. Most exacerbations last from a few days to several weeks or even months.”

“Exacerbations are caused by inflammation in the central nervous system. The inflammatory damages the myelin, which slows or disrupts the transmission of nerve impulses and causes the symptoms of MS.”

http://www.nationalmssociety.org/abo...ons/index.aspx

Another guideline with respect to attacks includes:

“Relapses generally consist of three phases. There is a period of worsening, with onset of new deficits or increasing severity of old deficits. This is followed by a period of stability, with no change in deficits. The final phase is the period of recovery, with variable degrees of improvement in deficits. Most patients recover within six weeks, although for some, improvements can continue over months. Recovery can be complete return to baseline status, partial return, or no improvement.”

http://www.nap.edu/openbook.php?record_id=10031&page=17

“An exacerbation may be mild or may significantly interfere with the individual's daily life. Exacerbations usually last from several days to several weeks, although they may extend into months.”

http://multiplesclerosis.blogharbor....4/3478125.html

Pseudo exacerbations also have a definition and guidelines. A simple definition would be:

“A temporary aggravation of disease symptoms, resulting from an elevation in body temperature or other stressor (ex. an infection, fatigue, heat, or constipation), that disappears once the stressor is removed. A pseudo-exacerbation involves only pre-existing symptoms (flare-up), rather than new disease activity or progression.”

http://www.thjuland.net/gloss1-p.htm...o-Exacerbation

“While the symptoms are real enough, they are temporary and subside when the triggering event, such as heat, has passed."

Once the triggering event is past—e.g., the body temperature returns to normal, the symptoms subside as well.

http://multiplesclerosis.blogharbor....4/3478125.html

So, most pseudo exacerbations are very short-lived, occur as a result of a trigger, and normally clear up very shortly after the trigger is removed. The exception to this rule is if it is a result of some sort of infection. What a doc would normally do though, when we are experiencing “new . . . or worsening of existing symptoms, lasting longer then 24 hrs”, is to try to determine if we have some sort of infection. If that is the cause, it is called a pseudo exacerbation (not a new neurological event), and we would be treated with antibiotics. If it is not a pseudo exacerbation, then it is defined as an attack.

Clear as mud?

I hope you can see why I am concerned about Bob blowing this off “another MS symptom that no one can explain”. Even with a MS dx, I would not accept that answer for what happened in this instance, let alone without any dx.

Cherie