I know that I'm asking a question that will have many different answers and may be totally different from my experience. I ask anyway!
For those with RRMS, (1) what has been the average length of time your relapses?
(2) When did you feel that the relapse was over and that whatever issues you had were likely permanent?
This first episode, following a possible CIS 20 years ago, began in late July/August with a roller coaster of symptoms. My neurologist says to see in a couple of months before I accept that however I feel then will be likely my new normal.
Thank you in advance for your comments.
Erin
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greaterexp
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Wow! I don't have any answers for you, but I would like to know what everybody has to say because the same question runs thru my mind as well. I hope we both can better understand. Thank you for bringing it up.
Erin, i'm following so that I can also find out about the length of remissions. I'm sure it probably varies per person. I went numb over five months ago, and it has never gone away. I will find out results of all tests next week and hopefully start some meds then. And maybe get any kind of remission.
Hi geaterexp, your question is like the beginning of the knowledge of what is MS from the zero point. We need to learn by ourselves to understand and find(recognize) the symptoms as a symptom the first point, to complete the picture, the stage. I learned a lot looking online to medical classification and identification in many MS websites, because I did not have any clue at the beginning about the INVISIBLE signs and symptoms. For better understanding and helping your doctor to know more about and how to treat your specific symptoms, you should know to describe in common words, then he will tell you the extension what you are asking for, because our experience is limited to see one physical body only. Cause, duration of relapse are totally different from each person and when and if cause progressive MS( in my view each relapse cause progressive MS), because we are with our auto immune system memory which is permanente and we are trying to destroy the activated lymphocytes using the new DMT. This is why my answer is each person is almost completely different. Each answer will not solve your curiosity, only if you learn about your own body.
Yes, I fully realize that no two people have the same experiences, and even the doctor cannot predict my particular course. But it would help me to look at others' experiences to give me some sort of feel as to what I might likely see.
I do take it one day at a time, since ever day is an adventure! Even a few months into this I've only learned that I don't really have a clue about what the day may bring. I guess we are all trying to learn and to read our own bodies the best we can.
I asked this same question on a MS Facebook support group and the answers ranged from 2 weeks- 9 months. Since each person is different there's no way of knowing for certain. Right now mine has been going on for 6 months and still counting. I think it has a lot to do with if you are getting treatment for it too because those who haven't been diagnosed it seemed like theirs had lasted longer than those who were being treated for it. Currently I have not been diagnosed so I'm in limbo feeling like I get to suffer longer just waiting for an official diagnosis.
That's an interesting question ! Bear in mind that I'm not yet diagnosed but would like to share my experiences.
Original illness began with stiff neck and movement disorder - suspected Encephalitis ( brain infection ). This slowed and ended by 6 1/2 weeks. However at 1 month other symptoms were emerging - buzzing, numbness, weakness, BP drops - adrenaline surges in response. I started to feel brighter and less ill by 4 1/2 months ( I had slept almost solidly until then ! ). Lymph nodes in groin popped up for a while. At five months, after extreme muscle weakness, the stiffness kicked in - severe for 2 weeks then mellowing slightly. At 1 year the flexor spasm kicked in, alongside positional vertigo bout - 2 months duration for vertigo, the leg spasm unfortunately stayed ! 7 months later second bout PV - 2 months again. A year after that was the sudden severe UTI/ sepsis/ relapse malarky. Around 2 months of extreme illness, then 'recovery' or 'some improvement' more accurately ( groin lymph nodes obediently popped up again ! ) in 3rd month.My calf developed a constant twitch 18 months before my original illness which has worsened with both attacks. I have no way of knowing yet if all these events are connected. If they are then it seems my attacks last around 2 months on average and the end is signalled by lymph nodes !
I will say that by 3 months my new symptoms appeared to have stabilised this time but a small improvement in balance/control has been noted over the last year : ) My legs do seem to randomly fluctuate more since relapse - I don't recall much fluctuation after 1st time ( other than explainable muscle fatigue from overusing them ). Maybe I notice it more as I have more deficits to overcome than before ? x
I hope you find answers soon. So many of your symptoms don't seem directly related to MS, but are you being tested for MS? It's such a strange disease with myriad symptoms, isn't it?
I am now being investigated for MS - awaiting results of neck/C spine scans. Took 8 months for a neurology appointment - very slow, overloaded healthcare system here ! I imagine it could be a great while longer, if anything shows and I am granted the privilege of any further tests this time. x
I'm not sure I've ever had a relapse. My ? First symptom occurred @ 1985-86 (foot drop with attempts at distance running). That did resolve after a few months.
Then intermittent bouts of trigeminal neuralgia X @ 1995.
Not diagnosed MS til 2008.
Mostly it's been insidious symptoms that slowly worsen or become worse that I eventually recognize as MS (blurring, hear loss, hemiparesis, fatigue, neuropathy, cognitive deficits). These do increase with stress or fatigue. But no true relapse. And they never go away completely.
Because of this, I asked my neuro on Monday, how do I differentiate RR, SP, versus PPMS. My MRI have been stable (no new lesions--knock on my wooden head) X diagnosis.
I know PP has more cervical lesions than brain. RR more brain. But both can have relapses/exacerbations and all forms do progress.
Neuro:" we are getting away from the old classifications and changing to something that better identifies the progression seen with all types of MS"
Interesting response from neuro, Erash. At the end of the day, all forms seem to end up as progressive. I did read the school of thought that more subtle damage occurred in between clearly defined relapses, rather than just damage during relapse and complete remission in between. x
I've been in a rollercoaster relapse since July. I have a few days where I feel "better" but my pain level is high and fatigue is constant. In the past this would usually last 2-6 weeks and maybe 2 to 3 times a year. I've had 3 relapses this year one for 3 weeks, the second was about 5 weeks and this one I'm not sure if is a relapse or my new normal
I appreciate all your replies. I've wondered about the current classification system. It seems to leave a lot of people out, since not everyone fits any one mold. Liz, I'm with you in hoping and praying for slow progression, no matter what.
The only relapse l had was optic neuritis, the 1st time it lasted a wk because l didn't know what it was, and had it again a month later. Both times my neurologist had me do the solumedrol. With the Prednisone taper.
I have been diagnosed with PPMS as I have only had one major incident, no relapses but continued worsening of several symptoms. My last MRI ( I have one every year). Showed no new lesions and no brain atrophy. That's Scary words when combined. I have read lately that progressive Ms should be named actve or inactive progressive. Fortunately there is a lot of research into new drugs, stem cell therapy, etc. Hope is a magic word we all need to embrace.
I do cling to that word, some days more than others. I'm sorry that you have PPMS, but as erash noted, we all hope and pray for the slowest progression. I hope you have a wonderful Christmas and New Year.
Thank you for getting the "MS relapses" conversation going, greaterexp - as we all know here because of the nature of MS, everyone's relapses occur entirely differently both in onset and frequency. Great to see the dialogue here with everyone's shared experiences.
For additional resources on MS relapses (or "exacerbations" as they are sometimes called), our online MS Relapse Resource Center might be a great site to check out for you and for everyone on this thread:
Check it out, and tell us what you think of it and your relapses - when there, go to "The Patient's Voice" section on the site and fill out the survey as well.
Thank you, John, for the information and links. While I understand how different our experiences are, I still find it helpful to compare notes and information here with one another.
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