April 2012 will mark the 10 year anniversary of my diagnosis. I have spend much of the past 10 years reading, learning, listening and educating myself about my MS. I am very proactive in my care and do as much as possible to keep myself and my doctor informed.
I appear to have misplaced my understanding of what a flare/exacerbation is.
I THOUGHT they were all but one and the same thing but maybe I'm wrong?
I've seen people use these terms interchangeably but then, during my last visit to the Neuro - actually, the NP for my first dose Gilenya, I got the impression from her statements that they were NOT the same thing.
::scratching my head::
My dilemma and frustration:
I FEEL like I've been going from one "flare" or "exacerbation" to another.
For example -
The majority of my problems are left sided.
I experience L'Hermittes that causes a banding type sensation in my left leg around my knee. It's like someone has wrapped an ace bandage around my knee suddenly. I've had this for years.
Recently, I started feeling the sensation in a different part of my leg - I felt it in my upper thigh.
Around the same time, the lack of sensation I experience in my torso (left side) increased and the total area of lack of sensation got bigger.
Then, one day I discovered that my RIGHT side torso area was almost entirely numb. I have almost no sensation in that area. (I still don't. It's been that way for over a month)
This CERTAINLY meets the definition of flare or exacerbation, right?
I called the NP on that one since I was new to Gilenya and the right sided symptoms started around the same time I started the medication. She says..."Yeah. Maybe you're having a flare."
Me? I say..."Well...Yeah. Something's up..."
I'm confused! (... I'm also having trouble understanding stuff like I used to be able to understand stuff)
RIGHT side symptoms after 8 years with primarily left side symptoms? (I'm not sure if it is of any importance or not but - the entire right side of my body went numb before I was diagnosed and that's what got me started down the road to diagnosis. Since the right side symptoms faded, I haven't had anything significant. So - is this of any importance?)
I frankly do not know the difference in terms. I had MS most of my life ( over 40 years before diagnosis) and did not have terms for it. All I know is if I am having a tough time with symptoms I am having a tough time with symptoms and I need to let someone know.
My symptoms used to be only on the left and have gradually moved to the right. Everyone is different but the shift to the right and cognitive are normal for me.
I have PPMS so I do not understand RRMS completely.
A relapse is when new MS symptoms appear, or sometimes when old ones re-appear or get markedly worse. Symptoms you have experienced before, or perhaps grown used to dealing with, might appear in a different part of the body.
In relapses, symptoms usually come on over a short period of time – over hours or days. They often stay for a number of weeks, usually four to six, though this can vary from very short periods of only a few days to many months.
Relapses can vary from mild to severe. At their worst, relapses might be treated in hospital, but many relapses are managed at home, with the support of the GP, MS specialist nurse, and other care professionals.
You might hear different names for a relapse - an ‘attack’, a ‘flare-up’, an ‘exacerbation’ or even an ‘acute episode’ or ‘clinical event’.
**Technical definition of a relapse**
Researchers and medical staff define a relapse as an episode of neurological symptoms that lasts at least 24 hours and happens at least 30 days after any previous episode began. Other possible causes for the appearance of these symptoms also have to be ruled out before deciding it is an MS relapse. Other causes could include infection or something else that raises the body’s temperature and makes symptoms worse.
Symptoms which come and go can sometimes be considered a relapse – they don’t always have to be continuous. For example, some people experience a shock-like sensation when they bend their neck. This can be considered a relapse if it occurs every time they bend their neck for at least 24 hours.
A similar discussion is at
with additional info in the comments at
This contrasts with a pseudoexacerbation or pseudo-relapse, which is a temporary condition caused by some external stimulus (illness, a rise in body temperature from a fever, hot bath, etc.) and which goes away when the cause is removed.
Here's a good discussion of that from
Many people with MS often confuse a pseudoexacerbation with a true MS exacerbation. The symptoms are similar, but the duration and underlying cause are not. A true exacerbation corresponds to advancing inflammation from the MS disease, as we discussed above. A pseudoexacerbation, on the other hand, is the temporary aggravation of existing symptoms.
In almost every case, a pseudoexacerbation results from an increase in body temperature. This increase may come externally, such as from the sun or otherwise high temperatures, or internally, such as from a fever or hormonal changes. Heat presents a problem since the nervous system does not operate correctly at higher temperatures. The messages that had previously flowed seamlessly between the brain, spinal cord, and peripheral nerves now contain “static” induced by the heat. This “static” is easily compared to static on a radio: the messages are getting where they need to go, but they are unclear and parts of our bodies are unable to understand. As long as the patient’s body heat remains elevated, the symptoms will not go away. When a patient with MS starts to feel the effects of a pseudoexacerbation, the best treatment is to cool down the body. Symptoms will often subside on their own, leaving no new or different long-term effects. (O’Connell, 2004)
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