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    #1

    When to call the Doc?

    I am waiting to go over MRI results with my doc. At my initial visit he told me I have MS because of all of my problems, gait, balance, and neuro exam he did. Then he ordered an MRI. They found one lesion and said that the shape of it (linear configuration) was worrisome for a demyleniating disease (of which MS is the most common).

    3 days after the MRI, my husband took us on a picnic and when we got home my right leg, from the knee up, started burning. Like when you have been out in the cold, and run your hands under warm water type of burning, then it went dead. No feeling at all, completely numb.

    It has now been 2 weeks and it is not better. It's not constantly, just off and on, every day. Sometimes the burning wakes me at night and I spend the rest of the night trying to wake up my leg. It has been so bad, I've ripped my pants off trying to cool it off. In between the burning and numbness, it aches, or I will get a piercing, deep sharp pain in the same spot on my thigh. Or I will get this weird pulsing tingling feeling, like a small electric current.

    I see the doc April 3, do I write all this down and wait to tell him when I see him, or do I call. I am not currently on any meds except for Tramadol for fibromyalgia pain, which I only take when I can't tollerate the pain anymore. I am not sure what to do, but this leg thing is driving me nuts!
    Tags: None
    #2
    By the way, this was not my PCP, it was a neurologist.

    Comment

      #3
      Sorry to hear you are having such awful pain. There are a number of drugs that are useful for neuropathic type pain - Tegretol, Amitriptyline, Doxepin etc so may be worth giving your PCP a call to see whether they can give you something to help.

      In the meantime you could also try a cold cloth on the area as this 'gives your brain something else' to think about and can sometimes help.

      Hope this helps.

      Poppy

      Comment

        #4
        It sounds to me like you are having an MS flare. Some docs, if they are mild, may just have you wait it out until it goes away. Often, flares are treated with steroids to help speed recovery. For me, even with steroids, it takes about three weeks for a flare to go away. Without steroids, my experience is that, rather than going away on it's own, it just continues to worsen.

        My advice is to contact your neurologist's office and tell them what is going on with you.
        ~ 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.

        Comment

          #5
          lucidmom I am in the same boat, 1 spot, but tons of SX's. My Neuro said I have Benign MS. Negative spinal tap ( but I have my doubts about that as it was a very traumatic tap took 3 times and specimen was bloody). NOPE I will never repeat that test!!

          I never know when to call the Dr. I get the same sensation of pain in the top of my feet. When it gets so hot I can't stand it anymore. I get in the tub and pour COLD water over it. It usually shocks my system back into correcting it self.

          Sometimes I get "Numb or Dead" spots on the top of my rt. ft or the sole of my heel. All (mostly) of my SX's are on my right side. Except for my flares/pseudo flares and those can be any and every where. Most of the time I just wait them out. I'm an ex-nurse and I don't like the steroids.
          Sissy

          Comment

            #6
            It's been over 2 months now

            Sissy, I'm so glad someone else has had only one lesion but it's still being called MS. Since I posted that first one, I've seen the neuro more 2x and he still says MS. My spinal tap too was normal, but one lesion on the MRI and all the symptoms to varying degrees, plus my neuro exam was not normal, he found several issues consistent with MS.

            My latest appointment was on the 29th of April, my burning, numbness, has spread to both feet, my fingers, left leg, crease of legs when seated, but that could be because it's getting warm, lips, chin. The feeling of spiders crawling on thigh drives me to rip my pants off and sit in the cold air. My doc said to call him at any time it gets to much to handle and that no one should have to deal with the pain, burning, or tingling. He has me on gabapentin and so far has upped my dosage 2x since I started. I was at 300 mg 3x a day. Now am up to 900 mg 3x a day. It doesn't help. So now my flare has either lasted over 2 months, or I am one of the unfortunate who will never get relief of symptoms even after the flare up is over.

            I hope you find relief for your symptoms because they are not something anyone wants.

            Comment

              #7
              I'm glad, lucidmom, that your neuro is taking your symptoms seriously and is prescribing meds to help alleviate them. Your doc is right; no one should have to deal with the pain, burning, or tingling.
              ~ 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.

              Comment

                #8
                Hi I'm back, but sorry to say very sick! It may take me a bit to do this, The last time I say my neuro was when it said my tap ,as stated, I got the impression since it was neg. he no longer considers me as an active MS pt??!! I called and asked him if my MS could have any effect on my shingles or vice versa! 2 days he sent me a message and stated the have no connection, .

                My MS has flared up real bad with this. I have a terrible bladder infection. Mass cog-fog. Dizziness, blurry vision, overwhelming fatigue. AND my nerves are on fire!! Its been two weeks. I can't tell whats my shingles and whats my MS!
                Sissy

                Comment

                  #9
                  Go see someone; your neuro, or your PCP or whomever you think will listen to you.
                  ~ 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.

                  Comment

                    #10
                    Second opinion

                    Sissy, have you gotten a second opinion? Or is this neuro your second opinion? You need relief from your symptoms.

                    Do as much research as you can, and take it with you on your next appointment. If he still doesn't listen to you, find a doctor that does. One that listens, doesn't think his answer is final, or isn't put off by your own research. Don't take his word that they don't affect each other, the MS and shingles.

                    My doc sat and listed through my tears asking if this is all in my head, or if my brain is somehow tricking my body into thinking there is pain where there really isn't any. He assured me that this is NOT the case. He wasn't afraid of my research or questions.

                    Ive done so much research that I have had 2 separate technicians ask if I'm an RN. So find everything you can, from the right source. From the actual MS organizations or websites. There is a lot of misinformation out there and it came confusing.

                    make your doc listen and work with you to get relief from your symptoms. Don't suffer through them, get help.

                    Comment

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