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    With MS it seems there is always something....

    Hi all! Well, it seems with my MS I get over one hurdle and find I have a new one. A few months ago it started with a numb and painful toe. Attributed it to MS and just kept moving although pain got worse and was also in my ankle and leg. Then it flared up bad in early May so I saw my primary care doc. She check for fractures with an X-ray and ultrasound for vein thrombosis. All clear but sent me to foot doc as pain significant. He diagnosed me with stressfracture and I wore the boot. Still wasn’t getting better, so I went back to him. He said just keep wearing the boot (no additional scans and no exam of my foot).

    So, went to another foot doc and got a second opinion. He did another X-ray and said no foot fracture....on original or updated X-rays. Thought it was nerve pain, although I had had some swelling too.

    Walked around, foot felt better, was feeling positive again after months of this foot pain and wearing the boot.

    Yesterday however my foot was really painful again and started swelling in the foot and ankle. My primary doc wants an MRI which will be done tomorrow. My leg is also painful (like before) from my butt to my foot.

    Of course, after a year of many health issues I am freaking out as I feel like MS is chipping away at me. I am afraid if it is MS....what does that mean and how does it get “fixed” or if it is something worse.

    And yes, it doesn’t help my mood that temps are up in the 90s.

    I used to feel more optimistic and hopeful, but MS is pushing me to my limit.

    No, I have been off Copaxone for 2 yrs now and will be starting a DMD in August (most likely Ocrevus). I am so afraid of the Meds but my fear of my MS is getting greater than my medication fears, if that makes sense.

    My cog fog is causing issues and I am sure that is Post is poorly written...I apologize but don’t have the energy and skills at the moment to correct it.

    Anyhow, just needed my “MS Friends” to chat this through. THanks for listening...as always!!

    Remaining hopeful to get to get to where I can post that things are amazing and I feel great...keeping fingers crossed. 🤞 🙏🏼

    #2
    Hi MGM,

    MS always seems to complicate things even that are not MS related.

    Do you wear shoes/sneakers that have good support? Nothing causes me more pain than shoes without support. When you stopped the boot, were you on it a lot full time and no boot at all?

    I get bouts of tendonitis/tendonosis. I just tried non custom orthotics from Dr. It helped with some joint pain, but did nothing for other pain. So fully expect to need custom orthotics when I go next week. Even with stretches, the Achilles is still sore and swollen, so thinking PT is on the horizon.

    It is a catch 22, as the non-MS issues have been limiting me. But the MS spasticity is worse without the exercise not to mention the arthritis.

    Hopefully the MRI will highlight any issue so you can heal. The boots are annoying, especially in summer(really compliments shorts), but sometimes needed. I may be wrong, but swelling to me usually means something structural and not MS related.

    Hang in. Lots of luck.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      I'm really sorry your are going through this - MS related or not, but I agree that the swelling probably means something other than MS related. I really don't have any helpful suggestions, but I understand how MS can eat away our patience as well as our bodies and feeds our anxieties. Not to mention other life's situations that happen our way.

      You are always so understanding of others problems, so I wanted to send you some good energy and ((Hugs))

      Hope you can get this latest problem resolved!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        I think many of us could have written this ourselves and just inserted whatever most recent "thing" is causing our undue stress. Like seriously isn't having MS enough?????

        I'm so glad you are getting a MRI. Please keep us posted and hang in there.
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

        Comment


          #5
          I agree.

          It is always something. I had cervical spine surgery in February. Finally began feeling better after about 6 weeks. One day, the weather was so nice, I decided to walk to an appointment I had. I fell on the asphalt, scraped up my knee and knuckles. I also got a really bad sprained ankle. I was in a boot for 4 weeks and a brace for anther 4. Then, just as my scraped knee was healed, I got my foot caught under a wire at my desk and re-scraped it. The exact same knee. Lol. The ankle still swells up and hurts now and then. I just put an ankle brace back on and wear it for a day or so. I hope you feel better soon. The heat doesn't help any of us. Ugh.

          Comment


            #6
            Originally posted by MyGirlsMom View Post
            Thought it was nerve pain, although I had had some swelling too.

            Walked around, foot felt better, was feeling positive again after months of this foot pain and wearing the boot.

            Yesterday however my foot was really painful again and started swelling in the foot and ankle.
            I've never had swelling with my leg pains. Is that common with MS? Hope you feel better soon.
            The future depends on what you do today.- Gandhi

            Comment


              #7
              Thank you!

              Seasha and Jules,

              Thank you both for replying...it brought tears to my eyes as I have been struggling so much this past year....and this foot issue is pushing me over the edge. Sigh.

              MRI is tomorrow night and I see the foot doc on Tuesday. Fingers crossed we can find a solution to both pain and swelling!

              Thank you both so much....you truly warmed my heart...more than I can express here!! ❤️🙏🏼

              Comment


                #8
                Originally posted by MyGirlsMom View Post
                MRI is tomorrow night and I see the foot doc on Tuesday. Fingers crossed we can find a solution to both pain and swelling!
                MyGirlsMom

                Good luck tomorrow and hoping for you that your foot issue is solved soon!

                Since dealing with MS over the years, I've never been so grateful and content with the ordinary, mundane, and uneventful days, when they occur.

                Take Care
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Originally posted by KoKo View Post
                  MyGirlsMom

                  Good luck tomorrow and hoping for you that your foot issue is solved soon!

                  Since dealing with MS over the years, I've never been so grateful and content with the ordinary, mundane, and uneventful days, when they occur.

                  Take Care
                  I agree 100%!
                  He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                  Anonymous

                  Comment


                    #10
                    Jules, Boudreaux, KoKo and Kittysmith,

                    Thanks for responding too!

                    I so wish there was a way to more accurately determine which path to take. I was reading the other thread on DMTs and Tysabri would probably be a better choice except I am JC positive. Ugh!

                    I guess my fear of getting worse as is with no Therapy is now greater than my fears (even long term) of the Therapy. It is a sad situation for us MSers.

                    Comment


                      #11
                      Wow, I can sure relate. I got an ankle foot orthotic (AFO) in january and it helped my walking so I wore it regularly. After a few months I realized my foot was really, really tight, not painful but super tight. It kept getting worse so I went to the neuro, must be spasticity he said, double up on the baclofin. It only got worse and then I started thinking it was feeling like plantar fasciitis, so I checked with the podiatrist, my AFO is totally flat and I have to remove the insole from the shoe to make it fit so absolutely NO arch support! I stopped wearing the AFO and wore normal shoes and my foot started to feel a little better. Now I have to see about a new AFO with support and the podiatrist thinks the muscles are so tight that he may want to put me in a cast for 6 weeks to stretch the muscles back out. Of course the heat is really taking a toll on me and with the tightness in my foot and the heat I am not getting much exercise. I am hoping for relief soon and can't wait for winter!

                      Comment


                        #12
                        My husband and I walked out of the ortho’s office last week and commented on how MS makes everything so complicated.

                        Turns out that one ortho dxd me with 2nd metatarsal stress fracture. Most recent took updated xrays and mri: no stress fracture and I have big toe osteoarthritis and most likely need foot surgery. So this pain in ankle and leg since April isn’t MS...probably due to walking off because of my big toe. I have already worn a boot for the “fracture” for 6 weeks and will now most likely have surgery and wear it again. Sigh.

                        I guess the pain can be fixed, which is most definitely better than my foot/leg pain from MS and nerves, which is truly harder to treat.

                        MS is such a complex disease and really tough to manage. It is so hard to understand until you live it or live with it. I know you all get that and have similar stories of your own too!

                        Comment


                          #13
                          I'm sorry you have to have surgery, but at least it can be fixed. I went through ankle surgery - maybe 4 years ago? I couldn't wear the boot as my walking was badly affected (more than it already was) and couldn't use a crutch because of balance issues, so I had to get around in a wheelchair.

                          Took a long time to heal, but all good now! I assume you will eventually get some PT? Maybe not? I opted for it myself as weakness set in because of inactivity.

                          Glad they figured everything out!
                          Hang in there
                          1st sx '89 Dx '99 w/RRMS - SP since 2010
                          Administrator Message Boards/Moderator

                          Comment


                            #14
                            Hello MGM,

                            Sorry that you are experiencing pain and I hope it all gets resolved asap.

                            May I ask if you feel misdiagnosis contributed to the problem? The first "specialist" appears to have made a huge mistake diagnosing a phantom stress fracture when the problem was osteoarthritis.

                            Do you feel wearing the boot may have made the osteoarthritis worse?

                            I congratulate you on getting a second opinion! The first doctor may have treated you for God knows how long for something not even there, missing what the problem actually is.

                            Thank you for posting. What you did in getting a second opinion may very well help someone else in discovery and treatment of a painful unknown they are facing.

                            Please take comfort in knowing you are finally on the right track. Also, know we are pulling for you.

                            Lastly, I realize you are about to make a treatment decision and may go on Ocrevus since you are JCV+. Personally, I think may be a good choice. Ocrevus is definitely more effective against MS than any of the 5 oral DMTs according to trial results.

                            Mavenclad is the newest and looks the most promising of the orals, to me. It may not be quite as effective as Ocrevus but it has less nasty side effects than the other orals, IMO.

                            I am a fan of HSCT, however age, fiances, and availability limit access for many.

                            Please know that mathematically speaking, if HSCT and Tysabri are off the table Ocrevus has the best chance of halting progression in MS. Lemtrada can be another highly effective treatment but, IMO, there are sufficient reasons to avoid it, if possible.

                            You have every reason to believe Ocrevus would be highly effective for you against MS.

                            You have the sincere hopes of each of us for your best health whatever you choose! Be well, my friend.

                            Comment


                              #15
                              Originally posted by MyGirlsMom View Post
                              With MS it seems there is always something....
                              Isn't that the truth!

                              Even when things aren't MS-related, it seems that MS might be what put us at higher risk in the first place. And, then complicates whatever is going on too.

                              I'm glad to hear that you are considering getting back on a DMD. An MS med can help to reduce the frequency and severity of MS flares, and can delay the progress of the disease.

                              I'd also encourage you to just take good care of yourself -- eat healthy, exercise moderately when you can, use stress-prevention and stress-management techniques, and just pamper yourself when you need to.
                              ~ Faith
                              MSWorld Volunteer -- Moderator since JUN2012
                              (now a Mimibug)

                              Symptoms began in JAN02
                              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                              .

                              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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