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    Old 10-21-2014, 07:20 PM   #1
    2tigermom's Avatar
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    New to ms

    I found this board a few weeks ago and have learned so much since then. Thank you!
    I began experiencing numbness from the waist down on July 14th. The numbness was very prevalent in my feet...toes/balls of my feet. Walking was VERY uncomfortable and still is. My feet, and especially my toes are also very stiff. My lower legs have more numbness than the upper legs. I also experienced some weakness/heaviness in my right arm. At times it was hard to write but only in about 3-5 second intervals a few times a day. My arm and writing are back to normal now.
    I saw a neurologist at the end of July. He ordered a neck MRI, nerve conduction test on feet and legs, and lumbar puncture. The results showed 2 lesions on my spinal cord and my spinal fluid was not good (the dr didn't talk about o-bands that I've learned about on here). The nerve conduction tests were good. The dr said it looked like I had MS but wanted to rule out other possible diagnoses with blood tests and a brain MRI with/without contrast. On oct 6th I went back to hear my blood work looked good and my brain showed no lesions but "dots" which I assume could turn into lesions. He confirmed that I did have MS. I started tecfidera last Wednesday.
    I have two main questions/concerns. First, my numbness in my upper legs and pelvic area had subsided about a month ago but this past week has slowly began to return. It is now just as bad as when the areas were first affected. Could this be stress related as to why these symptoms have reappeared? My feet are the worse and hasn't had any improvement since it first started.
    Secondly, is there any relief for my feet? Walking is extremely uncomfortable and becomes painful after I've walked most of the day. I'm a 4th grade teacher so staying off my feet is not an option, even though I find myself sitting more during the day. I've read there's no help for the numbness so I'm not optimistic.
    Thank you reading this long post. The shock of the diagnosis is slowly fading so I think I'm ready to start talking to other MSers. I'm a private person who doesn't like to burden people with my issues. I have a very good support system.
    Any thoughts are appreciated.

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    Old 10-21-2014, 08:38 PM   #2
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    Re: New to ms



    Was your testing held against the Revised McDonald Criteria? If your brain MRI had small dots, the doctor should have been able to tell you if they were lesions and if they were of the type/size for MS. Lesions on the spine quite often affect gait as you have shared. If your doctor based your diagnosis upon the MRI and LP, I would seek another opinion. There is no specific test for MS. Before beginning Tecfidera, were you screened and are you being monitored?

    Stress can cause symptoms to reassert and present. This recurring symptoms could be caused by your spinal lesions. I would encourage you to track your symptoms and see if there is not a commonality for the presentation. It might require 2-3 or more recurring symptom presentations before you find a commonality, and then you may not. Some trigger events can remain elusive or may be from multiple variables.

    Stretch, remain well hydrated, and maintain low impact exercise. These can help, BUT there is no guarantee your legs will get relief. You might need to patiently wait for things to settle. It is not easy. Walking that becomes painful is the result of crossing a red line. You need to find a point of moderation. This might require some experimentation as well as looking or listening for other things which might forewarn of your physical limit. For me, going over my red line means my recovery will take longer.

    You might respond to pool therapy (not a warm pool). This would allow low impact exercise while keeping your core temperature down. You might have a heat trigger. I have had a worsening heat trigger since 2002. A rise in your core temperature can cause neurotransmitters to stop transmitting, misfire, or slow down. These effects of the heat tend to worsen as the disease progresses. Not all MSers have heat issues. I did ok with heat from 1977 - 2002 before an overall worsening of my MS.

    There is a shock following the diagnosis. The grieving process can take time. For me, I learned to redefine "normal" for me and revisit that definition as needed. It becomes a benchmark against which I can judge how my day is. The one thing I can tell you is that your "normal" will very unlikely ever be obtained. Leaving your old normal behind and redefining what is now normal can help you get through the shock and grief.

    The good news is that MS is chronic. The bad news is that it is chronic.

    As a teacher, an easy accommodation can be made in the classroom to allow you to remain off your feet. When my MS worsened, I did part-time in my power chair. I did reach a point wherein it became more than part-time. But not having to expend energy in my legs, I had energy to get through the day as I was home schooling my sons. I also have a service dog. When my legs lack the energy, my service dog makes a world of difference in pulling me forward. Your school employer might need to make some accommodations, but many are inexpensive and many have grants available.

    If you have MS and want to continue in your career, you need to make proactive moves to help yourself. If you have to push yourself through the day, your career will be cut short, I fear. There are so many adaptive equipment products that can help you and they are empowering.

    Do not stop moving or stretching, but use moderation. You might need to prioritize things in your life. When I was home in my power chair, I learned that I could do many things with the chair while resting my legs for other activities.

    If you need to vent, rant, rave, ask, or share, please know that you are among friends and you are not alone!! again, Welcome!
    MS diagnosed since October 3, 1982
    MS onset circa 1977
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    Eternally blessed and eternally optimistic!<><

    Old 10-22-2014, 02:39 AM   #3
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    Re: New to ms

    welcome to healthboards! We are glad you found us! I am sorry you joined out club; but I hope you have learned that living with MS is not the end of the world. We are here for all of your questions, rants and concerns.

    To answer your questions, yes, stress can retrigger the symptoms you were diagnosed with. These may be issues you continue to deal with, or once they clear up, you may never have them again. IT can take months for a relapse or onset of new symptoms to clear up, they may clear up entirely or only partially...only time will tell. Did they put you on any steroids? Steroids, although they have their own risks, reduce inflammation, usually making you feel better. For legs and feet, this is common. You might want to talk to your neurologist about this and see if he or she thinks it might help. The bad news is that usually you need to start them at the onset of problems, but not always. Also keep in mind that the more you use steroids, the less effective they become. Use them sparingly- and only when you really need to.

    As far as relief otherwise, there are many drugs out there for symptom relief. There are a few specific to gait( walking) issues. You also should check with your doctor to see if anything might help.

    Tecfidera hopefully will help prevent new symptoms and new lesions- but of course there is no guarantees. There is so much debate on whether or not the disease modifying drugs really help. Almost all neurologists will steer a new MS patient towards trying one of them. All you can do is try. If this drug isnt the right one for you, there are plenty of others you can also try. Remember that it takes about 6 months for the medication to really get into your system and start to work- so give it a fair chance to see if it starts preventing future symptoms.

    I wish you the very best as you begin your MS journey. Its not the end of the world and yes, overtime, you will know your triggers and limits and be better able to deal with them. In the meantime, please know you are not alone and all of us have been where you are and survived!

    RRMS- dx 05

    Old 10-22-2014, 07:49 AM   #4
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    Re: New to ms

    Hi 2tigermom,

    I am sorry to hear you have received a diagnosis of MS

    I would doubt your numbness returning would be due to stress. It is not uncommon for symptoms to resolve completely, be permanent, or to have them come and go (all of this can happen). It's not about stress but due to the damage done to the Central Nervous System(CNS).

    Spinal cord lesions, such as those you have on your neck (cervical spine), are known for being more symptomatic than brain lesions. Spinal cord lesion can cause symptoms/problems from the point of damage, down.

    I understand what you are experiencing. I have been numb from the waist down 3 times which also includes the girlie parts. I have also experienced numbness just in the girlie part off and on through the years. My gait (walking) has been the most affected and has been so from the beginning.

    Did your Neurologist ever mention trying steroids? Steroids are not necessarily helpful for sensory symptoms like numbness but it sounds like you are experiencing more than just that. Steroids are used for exacerbations (relapse, attack, flare-up) There are also medications that can help with some symptoms, your Neurologist could help you in this area.

    Unfortunately, you may need to find ways to accommodate your limitations in the workplace. Sitting more instead of spending as much time on your feet.

    Working with a Physical Therapist(TP) and Occupational Therapist can both be helpful. Your Neurologist can help in this area.

    PT and exercise can be helpful, for some, to regain strength and endurance. This is something that will need to be continued throughout life.

    You are early in with this disease. Be kind to yourself and know it is possible for improvement.

    Best wishes.

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