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    Opinions, Advice, or Really Anything At All :)

    Hello all. New to forum, and kind of new to "possible" MS. I only say possible because my doctor told me it is a possibility, along with other autoimmune diseases. Before I continue I must warn you that that this will be a very LONG and DETAILED post. So, if you care to read it feel free to, if not, thanks for at least making it this far. I will list my stats first, then my symptoms in chronological order, and then I will list my tests and results thus far.

    I have an appointment with a Neurologist in 2 months (crazy booked where I am at). This is why I am making an attempt to gain some knowledge from individuals who may have experience with my symptoms, and or who just want to give an opinion or advice. Thanks in advance to all who reply.


    Age : 33

    Race : White (mainly English and Irish)
    Sex : Male
    Height/Weight : 6' (182CM) and 225 Lbs. (102KG) I did weigh 200 Lbs (was at the gym regularly) until 3 months ago when I started to rapidly decline, and just couldn't seem to get the energy to continue.

    Bi-Lateral Carpal Tunnel (Severe in right, mild/severe in left)

    Asthma (64% FEVI)
    Piriformis Syndrome (Right Side)
    Bone Spurring and Slight Disc Degeneration in Spine
    Peroneal Nerve Damage (Foot Drop) in left leg.
    Mild Sleep Apnea


    Symptoms Starting 2 years ago
    • Ringing in ear, with head pain; sometimes accompanied with dizziness *
    • Excessive Snoring; used to never snore, now will start before i even fully sleep *
    • Hearing loss *
    • Extreme Thirst *

    Symptoms Starting 1 years ago
    • Dizziness and then a drained feeling after; sometimes accompanied with lights
    • Vision Issues (blurriness, depth perception) *
    • Muscle Spasms and Cramps (Spasms primarily in arms, cramps primarily in legs/feet)

    • Heartburn & Acid Reflux (Primarily at night, happens in spells; have it for 2 weeks, then nothing for months)
    • Facial Flushness (more so around nose and eye are; sometimes burns like rawness) *
    • Occasional pain during ejaculation
    • Needing to urinate more often (sometimes pain/discomfort) *
    • Feeling of full bladder, but only small amounts of urine come out *
    • Nail Brittleness and flattening

    Symptoms starting 6 months ago
    • Memory Issues (forgot how I got somewhere, what I came in room for, certain words, to swallow own spit, etc.) *
    • Pain in back and hips (pretty much constant) *
    • Overall feeling of tightness; like my body needs to be stretched *
    • Difficulty Breathing (randomly happens; also under any exertion : stairs, walk/talk at same time) *
    • Upset Stomach (Primarily in morning, usually diarrhea)*
    • Feeling of restlessness (almost twitchy?) *
    • Bouts of extreme itchiness (primarily legs and back) *
    • Sometimes can not tell when I am done urinating *
    • Body tingles (almost like small little shocks or like something crawling on me) *
    • Fingertips smell horrible sometimes, even after I scrub them with soap

    Symptoms starting 3 months ago
    • Loss of coordination; more clumsy lately
    • Sense of fogginess, especially in morning, and some in evening
    • Fatigue (comes and goes; good days, bad days)
    • Joint Pain (prominently in hands, feet, and hips..but occurs in all joints at random)
    • Pain in hands and feet (more so in morning)
    • Numbness in hands (sometimes feet)
    • Tendon Pain; like when I move quickly from stationary position (Heels and Shoulders mainly)
    • Muscle weakness; in arms and legs primarily
    • Unusual Smells (finger nail polish, smokey incense, used cat litter)
    • Excessive Sweating with a smell of ammonia sometimes; noticed by others, not me
    • Hard time adjusting to light (mainly from inside to outside)
    • Bleeding easily and more than usual from banging into stuff
    • Inability to pop my fingers, but every other joint pops at random
    • Intolerance to Heat; exhaustion, sweating, difficulty breathing
    • Decreased and Increased sensitivity in feeling; can’t feel some things, others hurt bad
    • Headaches; not so much frontal but in temples and in back of head
    • Disorientation with heights; nausea and depth perception



    * Denotes symptoms that have gotten worse since first noticing
    Many symptoms seem to be stages. Will have them in episodes, then go away, then come back with some degree of worsening.


    Physical Tests
    • EMG Legs - Pereneal Neuropathy/Drop Foot Diagnosis
    • EMG Arms - BiLateral Carpal Tunnel - Mild/Severe Left and Severe Right
    • XR SI Joints - Good
    • XR Spine Lumbar - Minimal levocurvature of the lumbar spine centered at L2. Hypoplastic 12th rib. Mild Multilevel disc space narrowing. Spurring through Lumbar spine.
    • XR Left Hand - Mild DJD left ring distal interphalangeal joint. *Previous Injury Possibility
    • XR Right Hand - Good
    • Echocardiogram - Good
    • ECG 12 - Lead - Incomplete right bundle branch block. Abnormal ECG - Not sure if that means the test was incomplete, so possibly nothing.
    • Sleep Study - Mild Sleep Apnea

    Blood/Urine Tests
    • Creatine Kinase - Slightly Elevated at 268 U/L
    • ANA Titer - 1:160 Homogeneous and 1:160 Speckled
    • Comprehensive Metabolic Panel - Good
    • Urinalysis - Good; Just cloudy
    • Hemoglobin A1C - Good
    • Phosphorous - Good
    • Vitamin D 25 - Good
    • Magnesium - Good
    • Folate - Good
    • B12 - Good
    • Thyroid Stimulating Immunoglobulin - Good
    • Thyroglobulin Antibody - Good
    • Thyroid Profile (TSH and T4 Free) - Good
    • Anti Microsomal Antibody - Good
    • Glutamic Acid Decarboxylase - Good
    • Antibodies - SM,RNP,RO,LA - Good
    • Cyclic Citrullinat Peptide ABS - Good
    • C-Reactive Protein, Inflammatory - Good
    • Rheumatoid Factor - Good
    • Mitochondrial Antibody, IgG Titer - Good
    • Gamma Glutamyl Transpeptidase - Good



    Still waiting on the following : HLA Single ABC Antigen test

    Bold Highlights tests that came back with a positive result


    Okay, that pretty much sums everything up. So...if anybody made it to the end, THANKS! I will be patiently waiting for anybody's response.

    #2
    Hi Batman,
    I'm JerryD from Philly. I read your entire list of symptoms and your timeline. Good job keeping score. Good record keeping will be useful to you in the months to come. If your PCP mentioned MS, it may be time to look up an MS specialist!
    I have or had many of the symptoms that you list. I hope everything that is 'ailing' you can be resolved, with medicines and/or therapy. I hope you are not dx'd with MS. I had the Carpal Tunnel Release surgery before I was diagnosed with MS. What a waste! Think long and hard before going that route. Good luck on the journey! Buckle up ! You're in for a bumpy ride !!

    Comment


      #3
      Wow, Batman.

      I'm not a doctor, so I'll just tell you what my doctor told me, prior to my dx. "Lots of things can mimic MS."

      It's really possible those symptoms are MS. It's really possible they are not.

      But, keeping such a detailed list is a good strategy. Take that list to a neurologist, or even an MS specialist. Or, maybe you already have, since you are awaiting test results. And, please let us know what you find out.
      ~ 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


        #4
        I started having intense left leg pain this week. Since my primary is on vacation, I saw the senior doctor at the practice. He scheduled me for an emergency MRI that day, and here are my results:

        --T12-L1: There is no evidence of spinal stenosis, disc bulge or neural
        foraminal narrowing. No facet degenerative disease.

        --L1-L2: Mild diffuse disc bulge results in ventral indentation of the
        thecal sac, without canal narrowing.. Mild bilateral facet degenerative
        disease. No neuroforaminal narrowing.

        --L2-L3: There is a diffuse disc bulge with superimposed inferiorly
        oriented disc extrusion spanning the central to right subarticular zones
        resulting in severe canal stenosis. The central disc extrusion extends to
        the level of the L3 inferior endplate. No facet degenerative disease. Mild
        right neuroforaminal narrowing.

        --L3-L4: Diffuse disc bulge in the setting of thickening of the ligamentum
        flavum and facet hypertrophy contributes to mild central canal stenosis and
        clumping of the nerve roots.. Mild bilateral facet degenerative disease.
        The above described central disc extrusion results in impingement of the
        right exiting L3 nerve root. Mild left neuroforaminal narrowing.

        --L4-L5: Mild disc bulge, results in ventral limitation thecal sac. No
        central canal stenosis. Mild bilateral facet degenerative disease.

        --L5-S1: Minimal disc bulge, without canal stenosis or neuroforaminal
        narrowing.. Mild bilateral facet degenerative disease.

        I do not really know what much of what this means, but I imagine this is probably why I am having nerve issues in my lower extremities. I question if an MRI was done on the thoracic and cervical what would be the results, considering the bilateral carpal tunnel diagnosis. Also, I am guessing my primary got it wrong on piriformis syndrome.

        On a side note, the ability to form words has increased from once a week to almost daily now. Like I know what I want to say, but mid sentence I will just stop. My mouth works, but that ability to translate the thought to mouth is hard. Anybody experience something like this?

        Comment


          #5
          That info is way above my understanding. Is your Neuro considering an MS diagnosis or looking at something else?
          ~ 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
            Hi TheBatman,

            --L3-L4: Diffuse disc bulge in the setting of thickening of the ligamentum
            flavum and facet hypertrophy contributes to mild central canal stenosis and
            clumping of the nerve roots.. Mild bilateral facet degenerative disease.
            The above described central disc extrusion results in impingement of the
            right exiting L3 nerve root. Mild left neuroforaminal narrowing.
            The Lumbar Spine MRI indicates bulging discs which shows impingement on nerve roots, this can cause Neurological symptoms. Your Dr. should refer you to a Neuro-surgeon to evaluate if surgery is needed.

            This is not due to Multiple Sclerosis.
            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
              Sorry that you have a lot going on, Batman! I have degenerative disc disease(due to aging and injuries). From what I can see, most of the findings are mostly mild or minimal that's a good sign. Having these disc problems have nothing to do with MS however. You can rest your worries about that.

              What jumps out at me is the ANA lab work and the borderline numbers. Sometimes it can indicate an autoimmune disorder, but not necessarily. I would suggest an appt with a rheumatologist to have further testing and evaluation done. Here is some further reading about ANA https://www.rheumatology.org/I-Am-A/...Antibodies-ANA
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                I know my lower extremity nerve and pain issue is related to my spine. I always thought it was my hip. I always had my concerns if this was related to my other conditions. I have read extensively about everything in my MRI. My major concern is that when it starts to affect your bladder and numbness of body parts it can be severe. After the MRI was completed, the techs were acting very concerned, and extremely helpful, and started questioning how long I had to wait for an MRI, so obviously there is cause for concern, but what do I know? Lol. I see a spine doctor tomorrow to get some more information, so I am anxiously waiting.

                My major concern now is my speech and what I can only imagine as some type of flare up of something. My rheumy noticed that where my tendons meet the bones is very sensitive. The past 2-3 weeks I have not had a major issue with my tendons. Then all of a sudden over the last 2-3 days I have been having the tendon and speaking issues.

                It is almost as if when I try to get up from anywhere my achilles tendons are so tight that they feel like they are going to snap, and I instantly hit the ground, and I have to almost warm them up to start walking. Add that into the fact parts of my legs are numb and painful from the spinal issues and I look like someone who has forgot how to walk, haha.

                And then my speech. I am having difficulties forming sentences and remembering and pronouncing words that I normally can do with ease. Like I stated earlier, I know what I want to say, and can think it (unless its a word I cant think of), but I can not vocally say it. Its like someone stole my voice. I can move my mouth, but can not formulate any vocal noise.

                So...does anybody have this tendon tightness issue? And does anybody have this vocalizing your thought issue?

                Thanks in advance for any assistance.

                Comment


                  #9
                  Hi TheBatman,

                  You seem to be stuck on "possible MS" as the cause for your symptoms. I would suggest keeping an open mind to the possibility MS is not what is causing your symptoms.

                  I would suggest focusing on your appointment tomorrow and see what the Spine Dr. has to say about the MRI, s/he may want x-rays of your spine. Falling and tight muscles can be due to your spine problems. My Husband has had two Lumbar spine surgeries, 2008 and a more extensive one in 2015. Both surgeries were scheduled very quickly as he had a very real possibility of being paralyzed.

                  I do wonder if you take any medications, if so you should check medication side effects. Many times medication side effects can cause symptoms that would make you think there is some health issue occurring.

                  Much of what you list for symptoms doesn't sound like MS.
                  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


                    #10
                    Originally posted by SNOOPY View Post
                    Hi TheBatman,

                    You seem to be stuck on "possible MS" as the cause for your symptoms. I would suggest keeping an open mind to the possibility MS is not what is causing your symptoms.

                    I would suggest focusing on your appointment tomorrow and see what the Spine Dr. has to say about the MRI, s/he may want x-rays of your spine. Falling and tight muscles can be due to your spine problems. My Husband has had two Lumbar spine surgeries, 2008 and a more extensive one in 2015. Both surgeries were scheduled very quickly as he had a very real possibility of being paralyzed.

                    I do wonder if you take any medications, if so you should check medication side effects. Many times medication side effects can cause symptoms that would make you think there is some health issue occurring.

                    Much of what you list for symptoms doesn't sound like MS.
                    I did not realize that be me never stating I had MS, or even implying I had MS, meant that I was "stuck" on MS. I simply updated my thread and asked about 2 very unusual symptoms.

                    Also, considering that all of my symptoms started before the doctor put me on any medication, I fail to see how "I think I have symptoms" because of medication. I will ask my doctors if they are taking medication though. Maybe their medication is making them think I could have MS.

                    Thank you for your advice. It is greatly appreciated.

                    Comment


                      #11
                      Apparently you have read something into my response that was not written.

                      TheBatman:
                      all of my symptoms started before the doctor put me on any medication, I fail to see how "I think I have symptoms" because of medication.
                      I said,
                      I do wonder if you take any medications, if so you should check medication side effects.
                      Never did I state you have symptoms due to medications. Medication side effects can cause symptoms that makes the person taking them think that there is a health problem. When researching medication side effects and speaking to their Drs. many times symptoms are medication side effects.

                      I have experienced some serious side effects from medications which made me believe me believe the MS was getting worse.

                      I will ask my doctors if they are taking medication though.Maybe their medication is making them think I could have MS.
                      Sarcasm? really?

                      I did not realize that be me never stating I had MS, or even implying I had MS,
                      From your first post:

                      kind of new to "possible" MS
                      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
                        I had this entire thing typed out about "this" and "that", but I will let the previous posts speak for themselves. I also try to be a positive person, and I should not have let someone's negativity bring me into a negative state of mind. That is very unlike me.

                        I apologize to everyone on behalf of myself and Snoopy for going off topic, being insensitive, and not staying positive. I will continue my future posts with only diagnostic information related to my symptoms and my own opinions of myself. I also apologize to you Snoopy for upsetting you. That was completely wrong, regardless of the situation. I do hope we can be friends.

                        As for today's appointment, the spine doctor was confused because my symptoms are not congruent with my MRI findings. She stated that although there is some nerve impingement, that it would not cause the nerve issues I am having at this time, and would not cause the majority of my symptoms I am currently having. She does not recommend surgery because of this, and because she believes it would not relieve any of the symptoms I am having. She recommends physical therapy first, and then possibly injections at a later point. She also stated that although it is out of her wheel house, that she believes there is something else going on, especially with all the symptoms I have, and how I have been diagnosed with so many things in such a short period.

                        So, back to the drawing board I suppose. I just hate how I went from the epitome of healthy and fit, to a shell of that, in a few months. I personally do not want it to be anything they have suggested thus far, even though MS might be a good diagnosis, considering some of the other options, but I just wish I knew, so I could fight it head on, instead of throwing punches in the dark hoping to hit it.

                        How do some of you cope with the stress of not knowing?

                        Comment


                          #13
                          Hi TheBatman,

                          Although I do appreciate the apology it really isn't needed. The written word is easily misunderstood. There is less misunderstandings when you have a face to face conversation. I am glad to hear surgery isn't needed but please follow her advice and have Physical Therapy.

                          If I have read your information correctly you have not had a cervical (neck) or Brain MRI? If not then Neurologist you will see in 2 months probably will order them. It's not uncommon to wait that long or longer for new patients and even existing patients have that kind of wait.

                          Do you use a CPAP for your Sleep Apnea? The symptoms listed below can be associated with untreated sleep apnea.

                          Excessive Snoring; used to never snore, now will start before i even fully sleep * Fatigue (comes and goes; good days, bad days) Memory Issues, Headaches; not so much frontal but in temples and in back of head,
                          Do you use a maintenance Asthma medication? Symptoms that can be associated with uncontrolled Asthma:
                          Difficulty Breathing (randomly happens; also under any exertion : stairs, walk/talk at same time)
                          Vision Issues (blurriness, depth perception) *
                          Have you had a recent eye exam? If not you might consider getting one.
                          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


                            #14
                            Originally posted by TheBatman View Post

                            How do some of you cope with the stress of not knowing?
                            MS makes you cope with not knowing. If you want go about living the best life you can, you adjust and readjust when needed.

                            There is a balance in keeping track of symptoms and being hyperfocused on every thing we feel and experience. I had a neuro tell me that. The more I focused on MS and symptoms, the more anxious and depressed I became. So learning to document, acknowledge the fear and emotions associated to it then leave it behind, took time.

                            Since you have a neuro appt in a few months and your MRIs appear to not show MS lesions, my advice would be to focus on something other than how you feel. In two months, your neuro can read the MRIs to see if concur with radiologist or if more testing needed.

                            It is important to get anxiety under control so both you and your doctor can rule out this as contributing factors to any symptoms. I am not saying they are the cause of your symptoms, but important to rule out.

                            Mindfulness is a great tool to help with anxiety, MS or not. And with all your other diagnosis, understandable any anxiety.

                            My post isn't meant to discourage you from questions, but just my experience with what's needed to cope.
                            Kathy
                            DX 01/06, currently on Tysabri

                            Comment

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