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.

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

I googled the medication that she was taking or had just stopped taking at the time. It's a medication for Myasthenia Gravis. It does mention that an overdose would cause breathing problems.

and it also mentions that if you have heart problems or asthma, that it can cause breathing problems as a side effect. I dont know if she has any problems like that, but that could be one explanation for the "psychological attack" problems.

http://www.medicinenet.com/pyridosti...al/article.htm

Hi,
I think the breathing problems (at least the ones explained during the hospitalization) was due to the extreme fatigue and stress from all the gagging that was happening as they put the scope down my throat to look at my stomach (the medicine that i was on was causing severe acid reflux - which was aggravated by a hyatal hernia that i have - a hyatal hernia is where part of the stomach comes back up through the opening for the esophagus in the diaphragm) and they were checking for any signs of esophageal erosion from the acid that was coming back up all the time.

The vision problems alone, have been longstanding (i don't know if i have mentioned that before) but they have been long standing since at least the age of 7. I was dx w/ esophoria (a eye misalignment that the brain can compensate for) but my family was in denial about it so i never got treatment.

Fast forward to age 23 when I tried to drive and found out that i couldn't see past the end of the car, i was seen by a ophthalmologist in my college town who immediately referred me to Medical college of Georgia where i was seen by an ophthalmologist who specialized in strabismus (eye misalignment).

by the time that i saw her initially i was at 12 prism diopters and by the time i had surgery I was at 28 prism diopters (i elected to finish college before having the surgery b/c I didn't want to disrupt my academic pursuit by the unknown of what that surgery would do. I do not regret that decision.).

as a frame of reference on the prism diopters 6 prism diopters is considered severe eye misalignment.

I was at that in high school (when i first realized that i had double vision when driving - i had it other times too but my brain had learned to compensate for it when walking - driving at 60 mph or less was more than my brain could compensate for and thus severe double vision).

I didn't make an issue of it with my family at that time, if i even told them b/c i didn't want to loose my driving privileges that i had just gotten (i do regret that decision)! Plus I was in the midst of a domestic violence situation with my alcoholic step dad and i didn't want them to THINK that i had been drinking which is what i was always taught was the sole cause of double vision! (i don't drink to this day, never have but I don't think they wouldn't have accepted it at that time that i wasn't drinking - they do now).

the surgery that i had at age 23 is a surgery that normally is done at age 3!!!!

anyway, that might help explain somethings that i had forgotten to say earlier. let me know if that helps this make any more sense.

BTW when you have double vision that sometimes your brain can compensate for and sometimes it can't that can be very distressing, especially when your brain decides that it can no longer compensate during driving! That might could account for the anxiety attacks!

Also, I was dx with migraines also at age 19 (as a sophomore in college) and was under treatment for those through the remainder of my college career.

That could have been the "attack" (with the blurry memory that i have for the traumatic time that I had at age 16 with my stepdad) that i had in AP biology. The attack as i descirbe it now, may not have actually been that way, i don't know, b/c certain details are blurry and my brain likely filled in the missing pieces automaticly. All i know for sure at age 16 that the possible migraine that i had HURT and was very scary!!!!

As for the double vision continuing, that may have around the same time that my brain switched from compensating for it (esophoria) to (esotrophia - where the brain doesn't compensate as well for it and it becomes more persistent). I don't remember much about that time, b/c it was such an emotionally painful time for me. So i can't remember if the vision problems started before or after the pain, i just don't remember.

Bob, it sounds like you have (had) a number of health problem that could contribute to your symptoms and muddy the waters for a dx. However, from some of the symptoms you've described, it may very well be something is going on in your "C" spine that you should have checked out. I would follow up with a MRI of that area, as a starting point.

Good luck!

Cherie

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!