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    Struggling in Dx Phase

    I am in desperate need of communication with people in the same situation as me, whether you are diagnosed or not! So excuse me while I vent!

    I have been having many weird symptoms with normal blood testing. My main symptom though is the very common extreme fatigue which attributes itself to nothing specific! Second worst is severe dizziness/vertigo that is usually associated with an uncomfortable feeling in my neck and head. Sometimes it feels like I can't hold my head on my neck and I get nauseous just trying to sit upright. My body is usually not in pain but it's usually just weak as if I have the flu, for instance there are many times now where I can't open something easily because my grip is weak. I've got memory problems and fogginess to the point where I'm other people are noticing and my boss said I was acting "spacey" last week, and that I asked him the same question four times. Let's add urinary problems, jerkiness in hands, tingling in feet, balance issues and other little things it starts to get annoying. I don't want to write a bunch.

    I had been thinking I had diabetes/lupus/hypothyroidism or even a vitamin deficiency but those all came back normal. Unrelated, I had an MRI done to see if I had a prolactinoma (pituitary tumor that causes high prolactin and irregular periods) and nothing was found. However they did add that 'scattered subcentimeter foci of T2/FLAIR hyperintense signal are seen in the periventricular white matter' that are 'significantly more than would be expected for someone my age' (25yr). Whatever that means! He suggested a heart defect or vessel disease. The nurse practitioner I've been working with (no primary yet) ordered the MRI for me since my OBGYN moved without putting in the order, and was nice enough to order testing for my heart. My heart looks fine. I recently went to the ER with the vertigo/dizziness and neck pain and they referred me to a neurologist. So I'm waiting on that.

    I guess all that to say I don't care WHAT I have, or if there is more than one thing, but I am over having it. If any of that sounds like your MS or another disease you know of, let me me know. If it doesn't sound familiar, please still respond to me because I don't want to overcomplain to my boyfriend, and I definitely don't want to be taking about it with anyone else! Not at this point anyway.

    Phew...

    #2
    Hi Beachbreeze,

    Welcome to MSWorld! Sorry to hear about your symptoms. Some are similar to mine, but unfortunately, none are specific to MS.

    Originally posted by Beachbreeze View Post
    I had been thinking I had diabetes/lupus/hypothyroidism or even a vitamin deficiency but those all came back normal. Unrelated, I had an MRI done to see if I had a prolactinoma (pituitary tumor that causes high prolactin and irregular periods) and nothing was found. However they did add that 'scattered subcentimeter foci of T2/FLAIR hyperintense signal are seen in the periventricular white matter' that are 'significantly more than would be expected for someone my age' (25yr). Whatever that means! He suggested a heart defect or vessel disease. The nurse practitioner I've been working with (no primary yet) ordered the MRI for me since my OBGYN moved without putting in the order, and was nice enough to order testing for my heart. My heart looks fine. I recently went to the ER with the vertigo/dizziness and neck pain and they referred me to a neurologist. So I'm waiting on that.
    I'm assuming heart defect or vessel disease was suggested by the radiologist who read your MRI? Under "Impression," usually the radiologist mentions something about ruling out Demyelinating Disease or MS if they suspect that as a possibility. (But, they are also not the ones trained to diagnose you.)

    There's no single test to used to diagnose MS, and it is a disease of exclusion. So other possibilities do need to be ruled out first. Certain criteria (called the McDonald criteria) would also need to be fulfilled before you were given a MS diagnosis.

    Glad you were referred to a neurologist, who can hopefully sort out what is wrong. I hope it's fixable and not MS. Here's a link to the NMSS explaining more about how MS is diagnosed: http://www.nationalmssociety.org/Sym.../Diagnosing-MS

    Good luck and please keep us updated.
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    Comment


      #3
      Originally posted by Kimba22 View Post
      I'm assuming heart defect or vessel disease was suggested by the radiologist who read your MRI? Under "Impression," usually the radiologist mentions something about ruling out Demyelinating Disease or MS if they suspect that as a possibility. (But, they are also not the ones trained to diagnose you.)

      There's no single test to used to diagnose MS, and it is a disease of exclusion. So other possibilities do need to be ruled out first. Certain criteria (called the McDonald criteria) would also need to be fulfilled before you were given a MS diagnosis.

      Yes the heart defect/vessel disease thing was under the impressions of the radiologist. Nothing about a demyelinating disease, so I might be in the clear with something more treatable, but I just came to this forum because everyone seems to be having the same symptoms. I think by posting the MRI reading I was asking if anyone had a report that suggested the same on a non-related MRI. Sorry if my rant was all over the place.


      Hopefully the neurologist be helpful. Thank you for the link!

      Comment


        #4
        Originally posted by Beachbreeze View Post
        Sorry if my rant was all over the place.


        Hopefully the neurologist be helpful. Thank you for the link!
        No problem at all!

        MS lesions tend to look a certain way, and are found in certain areas of the brain. Which would explain why the radiologist suggested something else. But a neurologist, not a radiologist, is best trained to make that determination.

        Best of luck!
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck

        Comment


          #5
          Originally posted by Beachbreeze View Post
          ...

          I have been having many weird symptoms with normal blood testing. My main symptom though is the very common extreme fatigue which attributes itself to nothing specific! Second worst is severe dizziness/vertigo ...
          My body is usually not in pain but it's usually just weak as if I have the flu,
          ...memory problems
          ...urinary problems,
          ...balance issues.
          Yup. I have all of those.

          My MS first presented in 2002 with extreme dizziness that I thought was some sort of weird flu. It was followed, a couple of days later, with stroke-like symptoms that landed me in the ER and then hospitalized, after an ambulance ride in the middle of the night.

          Extreme fatigue. I currently sleep about 9 or 10 hours per night and take one or two naps per day. For a period of time in 2002, following two major flares, I was sleeping 16 - 20 hours per day.

          The dizziness was so bad that it was disabling for quite a few weeks. It was finally resolved by a physical therapist with some knowledge in vestibular therapy, who gave me some exercises to trigger the dizziness and re-train my brain to tolerate those movements.

          Memory problems are worst when I'm in a flare. They don't really seem noticeable when I'm not.

          Urinary problems include frequent urination, especially at night. A combination of Magnesium/Calcium supplements and Uva Ursi supplements helps so that, instead of getting up every two hours all night, I can usually get by with only getting up once during the night.

          Balance issues is another of my residual symptoms. I haven't really found a way to resolve this. Losing 60 pounds, when i was obese, 4 or 5 years ago, helped. And, I wonder if more regular exercise (ie: yoga and core exercises, etc) might help.

          It took 7 MRI's, a 2-week trip to Mayo Clinic in Rochester (they couldn't even accurately dx me), 7 MRI's and a multiple of other tests, multiple flares, ER visits and hospitalizations and almost two years to get an accurate dx. By that time, my neurologist felt that I met the McDonald's criteria.

          (In 2008, I switched to an MS Specialist. I suspect that she would have been able to dx me earlier. Although, I don't know. My symptoms, in 2002 - 2003, were fairly a-typical at times. I won't go into all of them here.)

          As others have said, there is no single test that can dx MS. And, there are many other diseases that mimic MS. I was first dx-ed with a probable stroke. When, following a second flare with different symptoms, it was determined that I'd not had a stroke, many other dx's were investigated and ruled out. Then, for over a year following my Mayo Clinic visit, it was determined that I likely had "central nervous system lupus", although, even then, MS was still not ruled out as a possibility.

          I'm currently still RRMS (relapsing-remitting multiple sclerosis); I haven't progressed to SPMS. I'm currently on Copaxone 40, an injectable that works well for me. I went on disability (SSDI) in 2008. I do some volunteering in the community, but, I'm careful about not over-doing it; I need my down time and I've become good at preventing and managing stress, which affects my MS in a big way.
          ~ 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


            #6
            Thank you for responding, Mamabug, and sharing your story. I wonder how many times a day you pee? I usually dehydrate myself in work environments and if I'm out because it's too much hassle to drink. Drinking a normal amount of fluid though, I will pee about 10-15 times. I actually had not thought that part could be MS related. I'm also curious what you did about work while you were flaring before you knew.

            I was fired last week. The 'spaciness' was apparently too much and they started to think I couldn't do my job correctly. Sigh*. Admittedly, the first few days afterward I felt surprisingly relieved just because I didn't have to THINK anymore...as bad as that sounds. I didn't have to try and sit up when I got dizzy, or pretend I wasnt holding my head up with my hands. I didn't have to pretend I wasn't running to the bathroom. I didn't have to pretend I didn't forget what I was doing and had been staring at my screen for ten minutes. So, as terrible as getting fired was, I think the relief after affirmed that there is something seriously wrong. I am no longer think of myself as wasting resources going to the doctor for "probably nothing." Right now it's figuring out how much is too much. I have to get another job, but I'm not setting my sights too high without a diagnosis. I need something I essentially cannot screw up.

            This week I have had more balance issues than anything. As soon as I stand up, wobbling. Going up stairs I feel like a cartoon character doing the windmill motion. Since I'm off work the dizziness doesn't get too terrible because I can just lay down and close my eyes. It gets better doing that. Is that something that helps you guys also?

            I have just switched insurance so I'll need to see a primary and then I'll get to schedule for neuro again (was told I couldn't make an appointment when they called back), or maybe the new primary will figure my crap out right then (fingers crossed)!!


            Part of me hates that I am on here trying to dx myself, but who else will care this much? It's hard when you have general symptoms, so I am going to list some of my symptoms and come back and tell others what my dx was:

            .Extreme fatigue
            .Feeling faint
            .Dizziness/vertigo
            .Poor balance
            .Neck -shocks, weakness
            .Concentration
            .Fogginess/memory problems
            .Urinary problems
            .Shakiness/jerkiness in hands & feet
            .Tingly sensations in hands & feet
            .Flu like weakness
            .Grip weakness
            .Increased sweating
            .Breathing issues
            .Nausea
            .Sleep problems
            .Cold intolerant with hot flashes
            .Hair loss/brittle hair
            .Legs (knees) feel clotted
            .Unusual feelings in head and neck
            .Irregular periods

            Comment


              #7
              Originally posted by Beachbreeze View Post
              Thank you for responding, Mamabug, and sharing your story. I wonder how many times a day you pee? I usually dehydrate myself in work environments and if I'm out because it's too much hassle to drink. Drinking a normal amount of fluid though, I will pee about 10-15 times. I actually had not thought that part could be MS related.
              I probably used to pee that frequently, during the day. Since I began taking the Magnesium/Calcium, I'm probably about normal during the day. Initially, I started with just that, and, several years later, when it was no longer as effective as it used to be, I added Uva Ursi.

              Originally posted by Beachbreeze View Post
              I'm also curious what you did about work while you were flaring before you knew.
              Before my diagnosis? Before I knew that I had MS?

              Well, my MS came on with a bang. Stroke-like symptoms, ambulance ride to the ER, followed by hospital admission. Although it took almost 2 years to dx me with MS, we all knew (me, family, doctors, etc), that there was something seriously neurologically wrong right from the start.

              I lost one job in 2002, due to running out of my 12 weeks of FMLA leave. I was self-employed, for about a year and a half after that, as a licensed day care provider and I had to quit that job because of another flare and hospitalization.

              I finally lost a third job, 6 years after my first "flare with a bang" and 4 years after diagnosis, due to a variety of issues, I think. HR was not very forthcoming about the reason, but I think it was mostly related to frequent absences and 4 years, in a row, of needing to apply for FMLA benefits because I'd run out of sick time.

              Or, do you mean, what did I do about frequent bathroom issues at work? When I was self-employed, it wasn't a problem. In my last job, I was a para-professional (teacher assistant) in a school. I just ran to the bathroom every hour, when there was a break between classes.

              Originally posted by Beachbreeze View Post
              I was fired last week. The 'spaciness' was apparently too much and they started to think I couldn't do my job correctly. Sigh*. Admittedly, the first few days afterward I felt surprisingly relieved just because I didn't have to THINK anymore...as bad as that sounds. I didn't have to try and sit up when I got dizzy, or pretend I wasnt holding my head up with my hands. I didn't have to pretend I wasn't running to the bathroom. I didn't have to pretend I didn't forget what I was doing and had been staring at my screen for ten minutes. So, as terrible as getting fired was, I think the relief after affirmed that there is something seriously wrong. I am no longer think of myself as wasting resources going to the doctor for "probably nothing." Right now it's figuring out how much is too much. I have to get another job, but I'm not setting my sights too high without a diagnosis. I need something I essentially cannot screw up.
              After losing 3 jobs in 6 years, I finally decided that I wasn't very employable anymore and applied for SSDI (disability). Many people use attorneys, and, even then, it can take up to two years and can include denials and appeals. I did it myself (with my husband's help to remember details). I was approved in 3 months, no denials. Although that was a blessing, there was a part of me that thought, "Maybe I'm more disabled than I thought."

              Originally posted by Beachbreeze View Post
              This week I have had more balance issues than anything. As soon as I stand up, wobbling. Going up stairs I feel like a cartoon character doing the windmill motion. Since I'm off work the dizziness doesn't get too terrible because I can just lay down and close my eyes. It gets better doing that. Is that something that helps you guys also?
              My only dizziness issues were after my first "flare with a bang" in 2002 for several month. Reclined, often with my eyes closed, was the only way I could manage it for much of that time. Until my physical therapist used her knowledge to help. I suggest you request a referral from your primary care physician to a physical therapist who specializes in vestibular therapy.
              ~ 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
                Mamabug you are awesome! Thank you for talking to me. The dizziness has subsided a bit and only happens briefly now. I've actually had a really good five or so days in a row!! The first day I made chicken and dumplings, the next I took the dog for a walk, and then went out with my friends yesterday. I feel so normal! Maybe it was all a mysterious virus and I'm over it now.... 😊😔

                So I was able to speak with the radiologist who did the dictation for my MRI yesterday!He confirmed my scan was abnormal for my age. I'm 25 and he said I have the brain of a 65 year old (They expect hyperintense white matter spots with ageing but mine are premature). He said my doctor would need to do a few more tests to definitely rule out a vascular disorder. He also said there is overlap in the look of MS and vascular disorders. I guess that could be why so many people here were told they may have had a stroke? He didn't put 'demylinating disorder' because none of the spots had the typical finger like appearance, but it's all about the symptoms and clinical findings. He said overall it is not a normal brain scan and to not blow it off. Is this relevant to anything happening, though? First step is a meeting with my new primary care on Monday..

                Here's a question for anyone who got to the end of that! Have you ever had an unusual or uncomfortable feeling by being touched like.. a normal touch almost hurt?

                Comment


                  #9
                  Originally posted by Beachbreeze View Post
                  Mamabug you are awesome! Thank you for talking to me. The dizziness has subsided a bit and only happens briefly now. I've actually had a really good five or so days in a row!! ...
                  Thanks.
                  And, no, no weird touch symptoms for me. But, it definitely sounds neurological, so there's always the possibility that it could be MS-related, in my opinion.
                  ~ 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
                    Originally posted by Beachbreeze View Post
                    Here's a question for anyone who got to the end of that! Have you ever had an unusual or uncomfortable feeling by being touched like.. a normal touch almost hurt?
                    Your description would fit for Allodynia.

                    With sleep, concentration, memory, breathing, and extreme fatigue it's possible to have a sleep disorder and/or some sort of breathing issue such as asthma. A sleep study can rule in/out a sleep disorder and Pulmonary testing can rule in/out asthma or another issue in that field.
                    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


                      #11
                      Painful touch

                      Hi beachbreeze, I have had MS for, well a long time. I personally have had a couple skin symptoms, and yes, one would be painful to touch, with a non painful stimulus. To me it's hypersensitivity, it can just be a small area on my leg, arm, back or anything. It can also feel like a bruise, or sunburned type sensation when shirt rubs or something.

                      Wishing for the best, and may God bless

                      Comment


                        #12
                        Thanks everyone. My appointment is now this Wednesday for the Neurologist. I'm excited, but based on most everyone elses stories, a little scared I won't get any quick answers. I'm a little less convinced about MS now just because of the recovery I've had. I feel pretty capable lately. I'll let you all know either way!!

                        Comment


                          #13
                          In RRMS (relapsing remitting ms), recovery between flares is what happens. That's the definition of our illness.
                          ~ 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


                            #14
                            Oh, my mistake Mamabug, I guess I understood wrong. I was under the impression that there was still decline either way, and that you felt only somewhat better after a flare. Hmmm...what a confusing diesease. How many times a year do you usually flare?


                            There are still so many things to test. The Neuro didn't have my referral paperwork so I had to list my symptoms to him. First thing he said was "Are you afraid you have MS? Because I get a lot of people who are afraid they have MS." Lol way to cut me off. I said well I dont know what I have but maybe you can figure it out. Anyway, after some digging into my symptoms he ordered an EEG, EMG, memory test, blood work, and the nurse told me I would be called to schedule my MRI. He didn't say anything about an MRI in the room with me though. Right now he is thinking I might be having complex partial seizures and/or an endocrine issue. Not really sure I was able to get all my symptoms out to him, but I guess this is a start. My follow up isn't until January though.

                            Comment


                              #15
                              Little lTe to the thread, but can relate. In 1993, I had an episode of "confusion" at work, followed by 6 weeks of vertigo, after which, extreme fatigue for months, which then followed by headaches for a year. I never regained the same level of focus/concentration/memory and it took me about 1 & 1/2 years to feel normal, except the cognitive issue.

                              I was tested for seizures, stroke, and God only knows what else. They thought possibly Endocrinr related when couldn't find anything, since history of irregular periods and flow rate, unless on pill.

                              I had MRI, EEG, EMG, U/S, CatScan, blood work, etc...

                              Nothing ever turned up, so it was chalked up to inner ear infection and migraines. Since I felt better, just walked away.

                              Diagnosed in 2006, when L'Hermites appeared, along with vertigo. In between 1994 and 2006, some intermittent numbness/tingling and joint pain, leg cramping. Found out I did have optic neuritis at some point, but I couldn't tell you when. Things always resolved, so I never followed up much. It didn't help that I had moved 4 times, so no consistent medical history.

                              So in 2006, Brain and CSpine lesions, one active causing L'Hermites. They reviewed my medical records and determined that 1993 was a relapse.

                              I had one relapse that included the touch sensation you described. Taking a shower hurt and burned, even if no hot water used. Scratching an itch felt like root canal. I could only describe that I felt like my nerve endings were on fire and getting a reall6 painful massage

                              So whatever you do, work with the neuro to find a cause, regardless of what it is.

                              Hope you feel better and get answers soon.
                              Kathy
                              DX 01/06, currently on Tysabri

                              Comment

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