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