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    New here. Looking for opinions :)

    Hello! I've been feeling progressively worse over the course of the year and feel like I'm losing my mind each time a test comes back "normal". Something is obviously not normal, and if you make it through my story, I'd love to hear some opinions - I'm hoping to ease my mind. I see a lot of people post similar stories without much activity on their threads. If this is something that is frowned upon on these boards, please let me know! I am just hoping for a little insight from those who have been though all the testing and waiting.


    History... I am a 36 year old female with ulcerative colitis and a long history of migraines, along with chronic daily headache, and an essential tremor that's gotten worse lately. So fall all my tests are normal. I've had normal cbc, sed rate, hemoglobin a1c, basic metabolic panel, tsh, b12 (700), vitamin d, folate, MRI of brain and spine, MRA of brain, and EMG (which picked up peroneal neuropathy in my left leg, even though I am not having problems with my left leg, I'm guessing it's from a sprain I had a few years ago).


    At first my neurologist suspected MS, but now that my MRIs are clear he says it's unlikely, though not out of the question. My symptoms certainly sound like they could be MS. He said it could take a long time to find out what exactly is happening... and I just feel very defeated right now. Could it be MS even though my MRIs look fine? Does it sound like something else? Maybe Lyme? I have mentioned that to my doctor and he thought it was unlikely, though I'm not sure why he hasn't tested for that yet so I'm going to mention it again.


    Since April I've been having the sensation of hot water being poured on my right foot. That whole leg feels "tighter" and weaker than the other. Along with that I've had an increase in headaches, dizzyness, confusion, fatigue. The fatigue is not helped by having to pee many(!) times a night, and tremors in my muscles that make it hard to relax enough to sleep.


    Not long ago I had a mild case of shingles. When that started my foot felt better for a while, with only a little tingling and some numbness in my little toes... I felt pretty good (besides the shingles!) for a week or two... But all my symptoms have come back. I have such severe fatigue, bone crushing want-to-die fatigue, and when this is happening I also notice these weird foot things happen more. It feels like my sensations are going crazy, tingly burny numby crawly weird stuff on my foot and up my leg. I'm so tired, but my head shakes when I lay down, like my neck won't relax / like it's strained. And floor feels like it's shaking! When I'm standing it feels like my knees are all wobbly, or vibrating. When I walk it feels like the floor is rubber. I feel SO nauseous all the time, from the shaking (or colitis or both). I get dizzy/nauseous often, nearly throwing up from movement (like in the car) or looking at things moving, like clouds moving or when looking at patterns. Headaches are more frequent/severe. Headache everyday. I feel like I'm losing my mind... I went to work without shoes one day. Forgot where I was on the expressway the other day - like had no idea where I was going for a few minutes. Can't focus.


    Can't do activities like vacuuming, yardwork, exercise / can't do anything even slightly strenuous without getting lightheaded and out of breath and pounding heartbeat (bending over then standing up makes me really lightheaded). Pounding headaches and eye pressure when standing up from sitting/squatting/laying.


    Other symptoms are joint pain (could be from my colitis). Frequent muscle cramps and twitching. I have a "fireworks" type popping feeling in my legs after I go for a walk (40 minutes or so of walking will do it) - this has been happening for a couple years though. Taking baths leaves me completely blurry eyed and now gives me headaches... I used to love baths, now they make me feel very weird, almost like I'm on drugs.


    One other thing that sticks out... I was treated for migraines before - in my teens - and at one point during that time I started having these pains in my ribs - severe, sharp / ribs pulling apart / take my breath away type feelings - and was given an elastic rib belt type thing to wear when the pains would happen. I was told at that time that I "probably had some autoimmune disease that will show up later in life". Well I do have colitis, so I figured that was that. But now I've had that same rib pain twice recently (both times in the bath). After almost 20 years of not feeling it I had completely forgotten about them (the pains didn't go on for very long, less than I year I think), but feeling the pains again brought this whole memory back. Does that sound anything like the ms rib pain symptom?


    Thank you for reading if you made it to the end! I hope I posted in the right place

    #2
    Hello ToughMama

    You gotta be tough, I guess, to be going through all the stuff that you're going through!

    I can certainly relate to the fatigue issues, the sensory symptoms, wobbly knees, vertigo feelings, bladder frequency, and muscle tightness. I don't have all of these all the time, but do have some of them at times, or have had some of them over the years.

    I've been spared from having pounding headaches and painful ribs, thank goodness.

    It is possible to still have MS with an MRI that doesn't show lesions. But usually some type of lesion will eventually show up with MS, even if it is a small black spot as opposed to a larger white inflammatory type lesion.

    You didn't mention having a lumbar puncture/spinal tap. This would be useful to show certain antibodies and proteins that are indicative of MS.

    My first MRI only showed some tiny black spots, and then along with a positive spinal tap, spinal cord MRI, clinical signs and symptoms, and history, a diagnosis was made.

    Can you see another Neurologist, maybe one who specializes in MS?

    Hopefully you get some answers as to what is going on.

    Sorry I can't be more helpful.

    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


      #3
      is your primary care physician being Up to date on all of your different test results? I am one of the "lucky ones" whose primary care physician is very knowledgeable when it comes to MS. This is just a thought that I had as I read your thread. Something else was very helpful, that was a nurse that also "specialized" in MS.
      Some of these issues took quite a few years to find(and the only reason that I was getting a new Dr. is that mine moved).
      I have some cognitive issues but I cannot say that I never felt like "I was losing my mind". I do have some sensory issues though. I also have extreme fatigue. Good luck to you!
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment


        #4
        Thank you for your replies! I appreciate you taking the time to share your thoughts.


        I should say that I have about equal numbers of good days (with mild symptoms) and bad days (with more severe symptoms). Not every day is awful... Rereading my post makes it sound like the symptoms are constantly awful, when actually some days I can tolerate them fine. But every day I do "hit a wall" of exhaustion I would say, where anything after that point is 10X harder and 10X more frustrating than before and I just can't deal with anything. Maybe that's just me though!

        I have not had a spinal tap, he had mentioned maybe getting to that - and maybe he will mention it again when I see him in December. Right now he seems to be focused on relieving my symptoms (suggesting meds for the headaches and/or tremors), while I am more interested in finding a reason for the symptoms. I asked him to wait until the next appointment before discussing meds again. I don't want take anything if I don't HAVE to, I have a very sensitive stomach.


        I am (we are) just sort of waiting ... either for a "classic" symptom of something, or for a test to show some results. He mentioned if the symptoms continue he may do another mri in the spring/summer. So for now I'm just going to take care of my body the best ways I can, practice some self care. And maybe make a list of questions for next time I see him (like about Lyme). I'll see what this next month and a half brings. What else should I do? Does it sound like something is being overlooked?


        Also, this is awful but I don't have a primary care doctor. Before my ulcerative colitis I hadn't been to the doctor in probably 10 years (saw the doctor so much as a teen that I grew very averse to them). Since the colitis I've been pretty preoccupied with getting that under control (diagnosed 8 years ago), so only seeing my gastroenterologist regularly. Finally started feeling okay-ish only about two years ago... Seems like that's about when I started to feel "off" in other ways (dizziness, headaches). Then when I started getting the sensations in my foot this year I finally saw a doctor (just a random first available doc), who just sent me right to the neurologist. I know I should find a PCP, but I have been putting it off... mostly using the excuse of not having enough time




        Comment


          #5
          ToughMama

          Glad to hear that you have good days as well!

          You mention hitting a wall of exhaustion most days where activity becomes more difficult and frustrating. I can relate to that, as I get what's known as MS fatigue. There seems to be a tipping point to where my body needs to stop and rest, so I have to pace my activities.

          Sounds like your neurologist is paying attention, since he wants to see you again in December, and also since he mentioned a spinal tap and possible future MRI. He'll evaluate you and your symptoms again in December to see where you are at.

          It would be helpful to him (and to you) if you keep a log of your symptoms, and take it with you to your appointment. It will help him get a better picture of what's going on, and you won't have to try and remember everything.

          Yes, take good care of yourself - rest when you need to, and do things to bring about calm to your being. I have learned that taking some time each day to close my eyes and just breathe to the point of relaxation (meditating?) really helps.

          Also, you might be interested in the LimboLanders thread - persons waiting for diagnosis.

          Any more questions, feel free to ask and we'll do our best to help!

          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


            #6
            Hello ToughMama and welcome to MSWorld.

            Do you take medications for your ulcerative colitis and has those medication side effects been considered as a possible cause to your symptoms? If not you may want to do some research into any medication you are taking and specifically the side effects, common and rare.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #7
              Thank you KoKo for your kind reply! I have recently started keeping note of my symptoms, mostly for myself, but will be sure to bring it when I see the neurologist again.

              Thank you also, Snoopy, for bringing up the medication. I am currently on only one medication (mesalamine), I've been on this one for 8 years with no side effects. When I started having these new strange symptoms I called my gastroenterologist first and asked if they sounded like they could be from the med. He thought perhaps the nausea/dizzyness, but most definitely not the paresthesia or tremors. For what it's worth, I have an appointment with my him in about a month and I plan to get his opinion on everything that has been happening. The only way to really know for sure would be to switch meds (to entyvio, a biologic), which I am hesitant to do since this is working for me now and because this mesalamine reduces my risk for colon cancer. I'll have a better idea about what to do after I see him and get the new pictures of my colon. FWIW, my neuro also did not think that my symptoms were consistent with the medication side effects.

              Also, I was on azathioprine (imuran) for about two years, but I was too scared of the potential side effects to remain on it - it was giving me anxiety about cancer and tumors. I know that Imuran suppresses the immune system, and it was not too long after I stopped that I began to notice my non-colitis symptoms began to increase. Now google tells me that Imuran is sometimes used in MS. An interesting connection maybe? And for what it's worth I'll mention that I've been on Prednisone periodically, though not for the past 2 or so years.

              Seems like with autoimmune stuff, there is a lot of cross-over with symptoms and meds. The doctor I saw for the shingles (random urgent care doctor), called me "one of those autoimmune nightmare people". How do people with more than one disease happening keep everything straight? So maybe that's how I could benefit from a good PCP?

              Comment


                #8
                How do people with more than one disease happening keep everything straight? So maybe that's how I could benefit from a good PCP?
                Yes, I'm sure that would definitely help!

                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
                  Seems obvious now! So in the mean time, while I wait for the appointments I already have, I finally try to find a good primary care doctor.

                  Comment


                    #10
                    checking back in

                    I just wanted to come back and check in before I have another appointment with the neurologist on the 14th.

                    Since my last post I have followed up with a new Primary Care doctor as well as had a colonoscopy to check on my colitis.

                    My gastroenterologist does not think any of these symptoms are related to the colitis or the medication (with the exception of possibly the headaches, but I've had those forever so...). The PCP sent me off for hip x-rays (which came back normal) as well as a whole bunch of lab work (ANA, CBC, HLA b27, Rheumatiod Factor, and another Vitamin D test) and FINALLY a Lyme disease test. I haven't gotten the blood test results yet, but I am surprised my hip x-ray came back clear as I have SO much hip (and leg) pain.

                    So, I have mostly stopped getting weird feelings on my foot, it now just happens if I am overly tired. But my whole right leg just hurts and feels so tight and weak (and the cramps are just awful). I've noticed that I have weakness in my right arm as well.

                    My number one symptom right now is the FATIGUE. It's hard to live with. It's so awful.

                    The other thing bothering me now is that I've been having a lot of problems understanding what I'm reading or seeing, sometimes I have to read things 10 times to get the right words, or sometimes I have to stare at a picture for a long time before I really understand what I am looking at. Also, I now have what I would describe a visual "TV static" type of overlay over everything... very hard to describe, but it's quite distracting.


                    So I am still waiting for answers. I'd be happy if anyone has suggestions on things that might be a good idea to ask the neurologist about when I see him. But mostly I'm wondering if these symptoms sound like MS. My PCP said they do sound MS-y, but I must just keep looking and ruling things out. I'm just tired of this.

                    Comment


                      #11
                      Hello ToughMama,

                      My number one symptom right now is the FATIGUE. It's hard to live with. It's so awful.
                      The other thing bothering me now is that I've been having a lot of problems understanding what I'm reading or seeing, sometimes I have to read things 10 times to get the right words, or sometimes I have to stare at a picture for a long time before I really understand what I am looking at
                      Being tired or fatigued can cause cognitive difficulties. Usually if the fatigue is addressed then cognition will improve. Determining why you are so fatigued might be a start to improving the cognitive problems. My first thought goes to doing a sleep study to determine if you have a sleep disorder which could account for your fatigue. Being overly tired or fatigued can also cause physical symptoms such as pain, weakness and more.

                      Do you know what your number was for your vitamin D level? If it is in the low normal it could still mean your D level is a problem and might be causing some of your symptoms including fatigue.

                      Did your hip x-ray include your Lumbar area (lower back)? X-rays can pick up mechanical back problems such as herniated/bulging discs, spinal stenosis, Degenerative Disc Disease(DDD) which can cause problems with walking and leg/hip pain and even fatigue.

                      As for MS, your Neurologist will need to make that determination upon further testing.

                      Best wishes on your diagnostic journey.
                      Diagnosed 1984
                      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                      Comment


                        #12
                        Sorry it's taken me a while to update this.

                        Snoopy - thanks for your reply. It turns out that my D and ferritin are both a little low, but the neurologist doesn't think it could be causing so many symptoms (I have started supplements). Also my ANA came back as (a weak) positive, though that can be from my colitis. So my PCP wants me to see a rheumatologist who I will see next week.

                        The neurologist wants me to see the rheumatologist and see what tests she orders, and then call him back when I get those results. He said he wants to do an MRI of my hip, since the pain is so bad, but is going to wait to see what the rheumatologist thinks.

                        THEN I told him about this new pain I have been having... a severe cramp in the top of my left foot (not the right foot that had been having the paresthesia), that has been nearly constant for over a week now. Very painful with visible twitching in my toes, and nothing helps the pain. This concerned him, he spent a while trying to get the muscle/tendons(?) to relax without luck ... and then he mentioned about possibly sending me to an MS specialist for a second opinion.

                        in the mean time he gave me a few meds to google to help with pain and sleeping, thinks that one might help (gabapentin, elavil, and mirapex).

                        so still not a lot of answers. the vitamin deficiencies may be part of it, but he said probably a small part.

                        thanks for giving me a place to sort this all out, not a lot of people are so understanding!

                        Comment


                          #13
                          sorry - forgot to mention while the x-ray of my hip did not include the spine, I have already had an mri of my spine and it is totally fine.

                          Comment


                            #14
                            Hello ToughMama,

                            Thanks for the update

                            All three medications your Neurologist mentioned are used to treat pain in MS. I have zero experience with them so I am unable to offer any advice. Medline is a good resource for medication information: https://www.nlm.nih.gov/medlineplus/...formation.html

                            a severe cramp in the top of my left foot (not the right foot that had been having the paresthesia), that has been nearly constant for over a week now. Very painful with visible twitching in my toes, and nothing helps the pain. This concerned him, he spent a while trying to get the muscle/tendons(?) to relax without luck ... and then he mentioned about possibly sending me to an MS specialist for a second opinion.
                            What I wonder about based on your description is spasticity (muscle spasm, cramping, stiffness, pain). If this is the case a muscle relaxer would be a better type of medication. However, I am definitely not a Dr. and do not know the reasoning behind your Neurologist's offer to prescribe one of the 3 medications mentioned vs. a muscle relaxer. Hopefully one of those medications will help.

                            Hope you get answers soon. Take care.
                            Diagnosed 1984
                            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                            Comment


                              #15
                              sorry, to clarify again.. the foot cramp has been near constant for TWO weeks now. unbelievable.

                              anyway, I have three months to get my d and ferritin levels up. I've read these two deficiencies are common in people with bowel disease. so perhaps all my symptoms are cause by that (although when I asked the neurologist he did not think so since they were "barely low").

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