This is my first post, I am a 51 year old female with no previous symptoms. Numbness started, and after 3 MRI's, and spinal tap I was diagnosed within 1 month. After 2 sets of oral steroids and a 3 day drip, I am still numb from waist down. Maybe a little improvement, but it has been 3 months since it started. I have started Avonex. At this point Dr. Says relapsing remitting, but symptoms don't fit that diagnosis, i am afraid it might be the more progressive type. Anyone else with similar history?
At this point Dr. Says relapsing remitting, but symptoms don't fit that diagnosis,
I'm not sure about your understanding of Relapsing/Remitting MS (RRMS). The terminology really doesn't fit for MS.
If you have Cancer and you are told you are in remission that indicates the is no signs or symptoms of cancer, the cancer is no longer active.
This is not true for MS.
The term "remission" for MS simply means not doing as bad as you were (some improvement/a little improvement).
Remissions are complete or partial.
Remission can mean you have residual symptoms, symptoms that come and go and symptoms that completely resolve. Relapses (exacerbation, flare-up, attack) can take weeks to months to resolve. Steroids does not change the outcome of MS. Steroids MAY shorten a relapse.
As far as being numb from the waist down:
I have experienced this 5 different times. All 5 times this has resolved, with and without steroids, but my severe relapses usually last 4 to 6 weeks with recovery taking months.
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression
The Following User Says Thank You to Snoopy61 For This Useful Post: lisa709 (07-14-2013)
May I ask why you think symptoms dont fit the relapsing/remitting catagory? Actually they fit exactly.....3 months is not a long time to go with a symptom, and many symptoms NEVER go away. 9 years ago, I was diagnosed because my hands and fingers went numb.....the MRI showed multiple lesions in my brain, the EEG was normal, and the spinal tap showed nothing...but I still got the dx; and 9 years later, I have no use of my left hand or fingers. My doctor says its all from the lesion on my brain. Nothing is actually wrong with my hand. Depending on how badly the nerve is damaged, you may or may not always have numbness.
As far as more progressive MS goes....you wouldnt start with that. Progressive MS takes years, would be a continuing decline in health and you would have tons more symptoms...and they would NEVER get better. Progressive MS means that there are no good days...and you wouldnt get it in 3 months. What you are describing in your post is the very exact definition of relapsing/ remitting.
Hold out for hope. You very well may see some improvement. Initial symptoms can last much longer than 3 months and still resolve....and even if they dont, you start noticing them less and less as time goes on and your brain rewires itself, in order to find ways around this...things will get better, one way or another.
Are you still walking? Able to go to the bathroom yourself? If so, be happy...those are very important things to do. Losing your independence would be much worse than having numbness....right?
MS takes years to show up and change from stage to stage. Im almost ten years in now...and still have the exact same symptoms I had when I started, and its still R/R.
Remember to stay inside during the worst of the summer heat....heat can make things 1000x worse for MS...take cool showers/ baths- swim as much as possible to build strength and keep cool....and take it day by day.
We are here if you need us.
RRMS- dx 05
The Following User Says Thank You to MSNik For This Useful Post: lisa709 (07-14-2013)
I am progressive and I experience symptoms and problems 24/7. If you think you do not fit the RRMS definition, I would encourage you to keep a symptom journal where you track your symptom presentation and duration of the attacks. After a year, go back and graph your results. You can compare your graph with the line graph depictions you can find online. You can also address your concerns with your doctor.
Progressive MS would be too soon to jump into. If you are dealing with MS related anxiety or depression, these latter two problems can cause symptoms to present due to stress. Your doctor can help you in this area by meds or by oral counseling where you can learn to deal with any anxiety or depression in a manner which benefits you. Low impact exercise can really help too as it activates soothing neurons.
Since your journey has only just begun, do not think of yourself as any one type of MS. Just define yourself as an MSer. I always tell people I have MS. Other MSers are the only ones who will ask "what type". If you spoke with a non-MSer, they would probably only know MS but little about what it is or even less likely what types there are.
In the beginning of your journey, try to move forward and away from any plans to "get back to normal". I would encourage you on a "good day" to choose what is normal for you now. My own definition has changed as my MS has changed, but I always measure my day against my personal definition of normal.
I am glad you found us here and I hope you find support and understanding. If you need a soapbox, those are free You are among "family" and I for one will not judge you in any way.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
The following user gives a hug of support to MSJayhawk: clf77 (07-14-2013)
The Following User Says Thank You to MSJayhawk For This Useful Post: clf77 (07-14-2013)