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Avatar universal

What does a remittance look like.

Hello everyone.  I wake up on Thursday and notice that I am not hobbling around as much as normal.  I got home from school and didn't feel like falling down asleep.  My gait has improved and I am thinking clearer.  I actually helped with the housework .

My question is, if this is ms, could this be a remittance of a FLAIR?
I have been having trouble on and off for a month.  Some days are better than others but this is now three days of improvement.  My kegs are still having spasms and there is still weakness but nothing like before.

My appt with the ms specialist is in a few weeks and i was thinking that if this is classic for ms, this may lend to my getting a quicker diagnosis.  I have read here eon the forum that all of the symptoms do not disappear during remittance periods and that pwms are never exactly the same as before but I will take this improvement over the way I was just a week go.

Id appreciate any feedback or advice anyone could give.

Thanks.
Best Answer
572651 tn?1530999357
The last neuro talk I went to addressed this question in a way I had not heard before.  The MSologist pointed out that the phrase relapsing/remitting was coined quite a while back , I believe he said in the 1960's, when the study of MS was still very new with modern diagnostic criteria.

They had nothing to base the categories on for labeling, but suspected there were different types of MS.    The researchers who eventually came up with the RRMS label, borrowed the concept from cancer research, where ultimately the goal is remission.

The MSologist pointed out what both of you have already stated - in MS we don't have remissions like cancer patients have.  Our disease never goes away.

Good luck with hte upcoming appointment- the waiting around is some of the hardest part of this process.

be well, Lulu
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Avatar universal
Above Lulu responded: "BTW - when I am in a "remittance" I know it because I feel good.  It doesn't happen often, but it's like the veil has lifted, I see sunshine, feel like my body is all connected, etc. "

This answer talked to me. It resonated.

I have had MS for a  long time. I am 75 and was finally diagnosed in 2000 as MRIs became available and so amazingly helpful as a diagnostic tool. I had brain lesions, spine lesions and also 'failed' my 'evoked potential testing' (meaning that the responses to nerve stimulation of my left side dragged in comparison to those of my right).  I was initially diagnosed as RR, two, three years later: "perhaps progressive RR'; then two-three years later again: "perhaps progressive/secondary progressive". I became inured to the characterizations or rubrics of Multiple Sclerosis. I had what I had and that is what I had - I thought.  Now as 2019 turns its firsr pages I have come to realize something. Firstly, before 2000 many Neurologists did not believe that PAIN was a symptom of MS!! I still do not understand how one can have demylenation of the insulation around nerves and not feel the pain that insulation is meant to protect us from. Needless to say, that is not an 'au currant' medical belief. Pain is very much a symptom and it is essential that it is dealt with in treating MS, no  different from vertigo or balance issues, muscle spasticity, restless legs, neuralgic fissions in which ever side of the body is primarily affected, double vision, lancing pains, and diabetic like symptoms whether one is diabetic, pre-diabetic or not at all. MS is never a pain in the butt - leave that to the urologists and other specialists of colon, kidneys, prostrate and liver which often will complicate the reading of symptoms once they appear - AND, as one ages, THEY DO APPEAR.

So the point of this ramble is PAIN. I find that when in pain most of my other symptoms are exacerbated. Ipso facto, if pain is eliminated, I ask - is one in remission? Can one be thought of as in remission?

Example, to the point: I have taken morphine in the form of Hydromorph-contin for more than four years. When I take it in high doses I am not only free of pain, but ALSO, as Lulu said: "I feel good...the veil has lifted...I feel like my body is all connected. With pain, I use a roll-aider and cane indoors and out. I have to. I will lose my balance. I will stumble. I was a semi-pro bike racer (bicycle not motor) and now I cannot maintian my balance! When not in pain -not to say that I can climb back into the saddle- I feel confident enough to ride again. Instead of walking with the roll-aider in my home, I walk with arms outstretched to the walls. Finally, as the medication wears down at night, I get worse. The stairs I used two hours earlier going down, I can no longer go up without a struggle.

My neurologisty and GP wants me to wean off the opiates; I ask them and myself: why? I have attempted it and I get the same results. I am on a standard dose of Gabapentin and it is NOT a substitute. It does help neuralgia which by definition is an enigma of itself as the causes can be many.

My point is for other others to comment on: Do you believe that the relief of MS pain consititutes a 'remission' in your MS?

Graeme W
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Avatar universal
Thanks everyone.  Its true that I have felt like a veil has been lifted in terms of the severity in which i can move around.  I would also like to note that when i forget myself, meaning that when i take off moving and not pay attention to my walking, I pay for it later.

This morning I got so annoyed with my four kids not wanting to go to church, I said forget it I'll go alone.  I bolted out of the house, spitefully left my cane and Started trotting towards church.  God laughs......all of a sudden i thought, slow down and don't get too cocky.  Ater mass, my husband was there with kids and asked where my cane was.  I told him i forgot it.  I didn't, i just took my will back because i am embarrassed with the cane sometimes.  Im just tired of needing it.  So there you have it.

I really think i have ms and everyone i come into contact with at church, remember i teach at a catholic school so am at church quite frequently, say they will pray for my healing.  I never turn away prayers, but I asked the priest, what i am not meant to be healed.  What if i am meant to bear this burden and live happily despite of it.  I think i shocked the priest.  Not to sound too religious, i said if Jesus could be his burden then why cant I.  It's minimal compared to what He went through.  At least it is to me.

Either way, i am not holier than thow by any means and hates to make anyone uncomfortable about  anything but that's what i was thinking.  I am not here to recruit anyone.  He said i should offer up all of my pain, fears, twitches, spasms, numbness, dizziness, etc, etc, etc to him and ask for the healing to happen for someone else.

That helps me to not feel so sorry for myself while i am waiting for a diagnosis or some bit of information to explain what is going on.

I will keep all of you in my prayers since we seem to be in this boat together, diagnosed or not.

I have to share this with anyone interested.  When this all started a friend at church said, "if you want to hear God laugh, tell him your plans for things.". That seemed to hit the nail on the head for me.

Happy Mothers Day to all.

Look forward to hering from all of you soon.
Kerri
Helpful - 0
1523516 tn?1330044257
WOW, this is exactly the way I feel.  It's like you explained it to a tee.  I too am in limbo land and feel that I have been in a remission for at least a month now.  I'm not completely symptom free, but I'm not as tired and my gait is better than before.  Very strange, but I'm not complaining.  Still have a lot of numbness/tingling and weakness in my leg, but not as bad as before.  I have felt a lot of stress in the last few days and have been outside in the heat and have definitely noticed some changes.  Praying I stay well enough to at least make it through this month!  There's a lot going on :)  

My prayers are with you and that you get answers soon.  I go back in August and pray answers will come then as well!

HUGS
Stacie
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572651 tn?1530999357
BTW - when I am in a "remittance" I know it because I feel good.  It doesn't happen often, but it's like the veil has lifted, I see sunshine, feel like my body is all connected, etc.

like I said, it doesn't happen often but when it does I embrace every moment because I never know how long it will last.

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Avatar universal
Thanks for answering me.  I am not completely symptom free.  Today I was doing housework and my body got really tired so io took a long nap.  My legs are still spawning slightly bite like i said, nothing like before.

The appt I have is with an ms specialist so I am hoping he will be considerate in terms of my issues.

I'll update.
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Avatar universal
Hi again.

Well, it's a bit too soon to know anything, but if this keeps up you will definitely be in remission. It's very true that not all symptoms 'go away' and that you might not feel MS-free, but there sure is a difference, isn't there? Keep track of the times, as that's important. A remission requires at least 30 days of a real diminishing of symptoms, or maybe a plateau where nothing else happens.

It took me forever to get a diagnosis, because I had about 3 long periods of feeling completely normal, well before MS was even on my radar. I'd just think, 'Well, whatever that was, I'm glad it's gone.' Doctors who knew little about MS didn't help matters. When things finally got aligned, I got my diagnosis, and since then haven't had a completely 'normal' day, but relatively speaking I've been well.

Good luck to you in getting to the bottom of this. I hope you have a good neuro. Do you have an MS specialist?

ess
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