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Never been good at limbo and need some help. Here's my story.

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    Never been good at limbo and need some help. Here's my story.

    I think my story is overdue and this is probably a good idea to track my progress and my symptoms and a chance to share my story.

    I am a 30 year old male, ~140, 5'10. Newly married, just moved to a new place and I am extremely worried.

    Been experiencing these symptoms.

    Long term, short term memory loss and cognitive skills - (Been getting worse for the past few years) Forgetting names, places, making wrong turns when driving. Having a hard time figuring things out, i.e cooking dinner: where to start, what I need, opening the wrong draw for utensils and cooking supplies (I do this a lot).

    Visions problems - (Started a week ago) I see floaters in both eyes and look like a small piece of dust that shows up when my eyes move but goes away when I stare at one time. Takes longer for my eyes to focus on things like looking at my phone then looking at a clock 10 feet away and vise versa.

    Dexterity and endurance with my right arm/hand - (First noticed this ~8 years ago) First noticed this when I was in college working on a chemistry lab and noticed it was harder to drip things into test tubes and other fine motor skill related task( like using a mouse). I still was able to do it but it was very hard, my hands would get sweaty, my joints would hurt and my hand would shake. It felt like this change happened pretty much over night. I used to play a lot of video games back then and chopped it up to that. My arm has gotten worse since then. I can still do what I need to do for a short period of time before my hand get stiff and things get a lot harder. This has now started translating to my left hand as well. Also my wrists feel very weak.

    Back pain - (Been having back pain for the last 2ish year). But thought it was the amount of sitting and lying down I did. I have been working out my back and going to chiropractor and PT and it help a bit but still hurts.

    Cracking joints - (gotten pretty A lot of my joints feel so stiff then I can pretty much crack any joint in my body. My worse parts are my right arm( shoulder, elbow, wrist and all joints in my fingers). But there is no joint pain, just stiffness. I crack my right arm a lot hoping to get more dexterity I guess.

    Stiffness in my left leg - (Noticed it about 2 weeks ago) When I walk far distances I notice my left calf and thigh is a lot more tight then my right leg. I don't have any noticeable gait problems but my do notice that my balance is getting worse. I still am able to work a pretty good amount I can still do 4-5 miles if I wanted to push myself.

    Diarrhea - (Bad diarrhea for the past 3 months) Sorry if this is little nasty but that is one of the symptoms I have.

    ED - It's harder to get the little man to stand in attention.

    Low blood pressure - (Noticed it about a year ago) Have had my blood pressure that would make up its mind. Sometimes I get readings of 80/50 and sometimes its 118/70.

    Dizziness and lightheadedness - (Noticed it around a year or two ago). I get lightheaded and dizzy when I get up of the bed or couch. Gets worse with alcohol so I don't drink anymore. There was one somewhere with a bunch of friends and had a drink and while walking around an arcade close by, I fainted. I woke up to EMT around me asking if I remember what happened.

    Sweating and body temp - My hands and legs would just start sweating. My hands and feet get cold at times and very hot at times. They just won't make up their minds. Sometimes I wake up at night and I'm covered in sweat.

    Muscle twitches - (Gotten more noticable and worse in the past few months) I get muscle twitches everywhere in my body, over 50 times a day and sometimes more. Predominately in my left leg, right arm and stomach but I can get them anywhere.

    Tinnitus - (noticed it about a week ago) ringing in my right ear would come and go. Rings for a few seconds to a minute then stops.

    I don't have prolonged tingling or numbers in my arms or feet. I do noticed that when I lay in certain positions or sit on the toilet the wrong way they do start to tingle.

    There are probably more symptoms but my brain doesn't want to remember anything.

    I went to my GP regarding these symptoms in January he ran a battery of blood tests and found things to be normal. Then he sent me to a endocrinologist and she ran a battery of test said everything was normal except for two things. I had high prolactin and ferritin not super high but enough for it to be abnormal. I haven't done a vitamin panel and my GP will not order it until I see my neuro and get MRI done.

    Also got referred to the neurologist which tested me and said I have hyperreflexia in my knees and hyporeflexia in my right arm. He said it is possible that I have MS and a lot of these symptoms can point in that direction. I am scheduled to do an MRI on only the brain on monday (my insurance wouldn't approve neck and spine) and have another appointment with the following monday.

    I am beyond worried and would love any support and advice anyone has to offer. Thanks for reading and any help given.

    #2
    Hello Hassl3 and Welcome!

    Thank you for sharing your story and your current situation with us. I'm sorry to learn that you've been dealing with so many physical issues. It's difficult not knowing what the heck is causing them.

    You have done a great job with your symptom log - clear and easy to understand.

    We all can understand and relate to the worry that you are experiencing. Not a very pleasant feeling, to say the least.

    It would appear that you have a good GP who wants to find out what is causing your symptoms. He first ordered blood tests, then referred you to an endocrinologist, and now to a neurologist.

    I don't have any advice at this point, except maybe to try and relax (I know, not an easy thing to do!). You can google - relaxation response. It's a very simple way to relax yourself.

    Also, wondering if you have any anxiety about the MRI?

    Some people do better with an anti-anxiety med during the MRI. On the other hand, some people say they almost fall asleep (which I can't understand because to me the noises are so loud, even with the earplugs).

    In any case, I would say that for now you just need to take good care of yourself, and focus on what comes next, which is to get your MRI on Monday. Then the next thing would be your follow-up appointment.

    Good luck on Monday and let us know how it goes. We'll be here.

    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
      Could Lyme disease be a possibility for you? I'm in limbo too and it's kind of narrowed down to either MS or Lyme. Both can be hard to diagnose.

      Comment


        #4
        Inflammation check?

        Hassl3 I’m so glad you are reaching out even while things are still paning out.

        I agree to try relax because no stress on your part will speed things along.
        However, with stress being the number one trigger for MS and other autoimmune diseases I would examine the foods and lifestyle choices you make everyday. What once was harmless may now be a trigger for your body.

        I was dx with MS when I was 16, but in the year before that I had already been dx for 4 allergies, (I give you my bathroom issue sympathies) a genetic mutation that impaires vitamin B-12 absorbtion (back aches and blurry vision that only improved with convergence eye training years later) and I had lost one of my siblings to suicide. All the stresses added up over those two years and I found one day I couldn’t feel my toes properly.

        MS seems often to be the result of your body deciding the world is evil and it trying to take it out on itself. But if you do have MS you can and will learn to adapt. You will take meds and vitamins, go to doctors appointments, but you will still be able to live your life.

        I had to learn to go to sleep early, but I can still usually out run my friends on a track.

        Best of luck

        Spot
        Gatitude can transform common days into Thanksgivings, turn routine jobs into joy, and change ordinary opportunities into blessings." - William Arthur Ward.

        Comment


          #5
          Thanks for the responses

          Thank you KoKo, mathgirl24 and SpottedCat for the warm welcome and quick replies.

          The doctors haven't checked me for vitamin deficiency or Lyme disease yet. This is still at the early stages of diagnosis. I understand about the stress and I think that is what makes it worse but relaxing is really hard. I try to get out to walk around and exercise everyday to relax and I think it's helping.

          I have a co worker who was diagnosed with PPMS around 6 years ago and we worked together at a federal park that use to be a military fort during WWI so I don't know if that environment (toxins?) had something that triggered it. I'm not even sure what to think at the moment.

          The weird part about this is that besides my right arm, I didn't notice anything getting worse for 8 years until I dug around in my memory and connected a few lines. Even then, it's hard to pinpoint anything major. Also, I don't have the typical numbness and tingling that goes along with most cases, is that the case for anybody here?

          I also noticed hyper pigmentation on my body recently like dark spots on my back and little moles on my body. Maybe they been always there and I just haven't noticed until now? I'm not sure, I'm very confused and maybe just looking for reason to deny that it is MS.

          Comment


            #6
            Hassl3

            Originally posted by Hassl3 View Post
            I try to get out to walk around and exercise everyday to relax and I think it's helping.
            Good for you! Exercising, to the best of your ability, is very beneficial.

            Originally posted by Hassl3 View Post
            Also, I don't have the typical numbness and tingling that goes along with most cases, is that the case for anybody here?
            Numbness and tingling were not my initial symptoms, but with MS it really depends on where the demyelination damage is.

            My initial symptoms were gait disturbances (slight limp of my right leg and tripping), right arm weakness, right hand dexterity issues, extreme weakness after hot shower or hot weather, and bladder urgency.

            Initially, I had predominantly spinal cord lesions.

            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


              #7
              I'm sending you patience, as you wait for the diagnosis process to end.

              In the meantime, please do what you can to manage symptoms.

              Long term, short term memory loss and cognitive skills - Try some memory management tricks, whatever might work for you -- use sticky notes; put notes to yourself in your phone and use your calendar and alarm on your phone to remind you about things; use GPS when driving, even to places you know how to go; write down a list of simple steps for tasks such as making dinner before getting started, etc.

              Visions problems - I don't have good suggestions; maybe somebody does? Maybe your optometrist has ideas?

              Dexterity and endurance with my right arm/hand - ?

              Back pain - Yes; chiropractor and PT are good ideas. My husband says that it helps for him to tighten the place where it hurts (similar to flexing a muscle), hold it briefly and relax it. He says it helps to reduce the pain.

              Cracking joints - - ?

              Stiffness in my left leg - - ?

              Diarrhea - Imodium AD can help when it happens. But, it might be triggered by diet sensitivities. I found that, when I discovered I had a gluten intolerance and reduced my gluten, some diarrhea that used to be frequent hardly ever occurred anymore. Taking a gluten enzyme supplement when eating gluten also helped. You can purchase it at a health food store or on amazon.com .
              Gluten sensitivities are fairly common in people who have MS. Other possible diet sensitivities to consider are dairy and soy.

              ED - Sorry; I can't help you with that, other than to suggest viagra. Sort of a bummer at your age, and being newly married.

              Low blood pressure - - ?

              Dizziness and lightheadedness - A physical therapist with vestibular training helped me to re-train my brain to tolerate movements that triggered my dizziness. It might be worth asking your PT if that's something they can help with, or if they could pass you on to a different PT who could.

              Sweating and body temp - ?

              Muscle twitches - - ?

              Tinnitus - - ?

              I don't have suggestions for managing all of these symptoms, but perhaps our occupational therapist might. You could post some questions here.

              https://www.msworld.org/forum/forumd...ysical-Therapy

              Also, while your neurologist works on diagnosing your symptoms, your primary care physician might be a good resource for you to go to for symptom management. You have a good beginning on a list of your symptoms here on this thread. Consider printing it out and adding to the list as you notice and remember additional symptoms. Perhaps you'll wish to make an appointment to see if your doc has suggestions on how to manage some of these.

              Best wishes.
              ~ 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
                Welcome. Not too much to add that hasn't been said. MS or not, learning stress management techniques is a critical life skill.

                The one thing that jumped out to me is that low blood pressure can contribute to dizziness.

                There is also a condition called orthostatic hypotension: It is when your blood pressure drops when standing up from a sitting or lying down position. They recommend making slow transitions in movement and first sit up from lying, wait, then stand. It can be caused by dehydration, medicines, age (not a factor here). It can also have other medical causes.

                Also recommend vestibular therapy if the dizziness isn't related to blood pressure.

                Lots of luck. One day at a time.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  Thanks for all the support that I've been given. I will try to incorporate the advice. My MRI is tomorrow and I'll will update my process every step of the way.

                  Comment


                    #10
                    Originally posted by Hassl3 View Post
                    Thanks for all the support that I've been given. I will try to incorporate the advice. My MRI is tomorrow and I'll will update my process every step of the way.
                    Hassl3

                    We'll be looking forward to your updates.

                    Wishing you the best tomorrow!

                    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


                      #11
                      MRI

                      Got the MRI done. It was okay, took about an hour and the tech was really nice and professional, kept me in the loop the whole time. It was pretty relaxing that I took a quick nap in there haha. I made sure to get a copy of the scan in a CD form but kind of scared to look at it. I moved my neuro appointment up to Thursday since the tech said the report would be ready in a day or two. Planning to print out my symptoms and the results to the appointment and really push the neuro for more testing. Wish me luck.

                      Comment


                        #12
                        Thanks for the update.

                        Lol; yeah, I dize off during MRIs too. They're loud, nut they are so rhythmic that they lull me to sleep.

                        Best wishes on your appointment.
                        ~ 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


                          #13
                          Originally posted by Hassl3 View Post
                          It was pretty relaxing that I took a quick nap in there haha.
                          Hmmm......you're one of those people. I'm jealous.

                          Originally posted by Hassl3 View Post
                          I made sure to get a copy of the scan in a CD form but kind of scared to look at it.
                          It would be a good idea to document your questions about the MRI results, and be sure to take them with you to your appointment.

                          Originally posted by Hassl3 View Post
                          I moved my neuro appointment up to Thursday since the tech said the report would be ready in a day or two. Planning to print out my symptoms and the results to the appointment and really push the neuro for more testing. Wish me luck.
                          Good luck!

                          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


                            #14
                            Update

                            Went my neuro appointment and got the results of my MRI. He said it was clean, though I'm dubious of MRI scan since they didn't really scan too many slices of my brain. Apparently the MRI is to focus on my pituitary gland. Getting a MRI of the neck is next. Also saw my GP as none of my doctors want to send me in for a Vitamin panel. He still didn't send me in and pretty much called me a hypochondriac with a bit of a chronic issue. Yet my symptoms continue to worsen, mostly my eyes, left leg and right arm. I'm so tired and lost.

                            Comment


                              #15
                              Originally posted by Hassl3 View Post
                              Went my neuro appointment and got the results of my MRI. He said it was clean, though I'm dubious of MRI scan since they didn't really scan too many slices of my brain. Apparently the MRI is to focus on my pituitary gland. Getting a MRI of the neck is next. Also saw my GP as none of my doctors want to send me in for a Vitamin panel. He still didn't send me in and pretty much called me a hypochondriac with a bit of a chronic issue. Yet my symptoms continue to worsen, mostly my eyes, left leg and right arm. I'm so tired and lost.
                              Hassl3 ~

                              Sorry to learn that you are not much closer to finding out the cause of your symptoms.

                              Try not to be too discouraged, as there are more tests to undergo.

                              You still have your c-spine MRI and your vitamin panel to get done.

                              Also, have you been seen by a neuro-ophthalmologist for your eye issues?

                              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

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