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    Trying to find the strength to keep going

    Hi all.
    my Friends and family call me Kez. Iím a 34 yr old bloke from Australia and a year ago I was active and never sat still. Always finding something to do and multi skills in almost anything hands on. Mechanic by trade but with lots of building and electrical experience. 5 years ago I built my own house and today manage two mechanical workshops and a fleet of blokes, I have thrived at being busy. Family life has been good with 2 young kids and a wife, the kids Iím watching grow, yet becoming more and more distant from. Itís not fair on them, I worry about them more than my own pain. I donít want them to miss out because of me.

    things started a year ago out of no where. Prior to this never needed to go to the doctor. My wife had to convince me to go.

    started with extreme fatigue which I thought was maybe stress related . Removed the stress from my life for a while by holidays and breaks from work but didnít improve.

    then came the headaches, every day since it started.

    cramping legs, arms, hands, feet

    cold arms, hands, feet

    The sun makes me feel unwell and gives me migraines and fatigue.

    memory issues, speech issues, muddling up my words.

    twitches, movements in muscles, biting/stinging under skin. Everywhere, side of face, arms legs chest even my arse. Some days my body looks like itís playing music to a beat.

    pins and needles in random places for no reason for 5 minutes.left shoulder, hands, arms, feet. Sometimes they just feel dead

    skin gets randomly itchy, sometimes after the showers to hot or if I start sweating

    my nerves hurt. Itís torture sometimes.

    ringing in my ear and poping sounds

    blurry vision, randomly but also now have binocular diplopia they say I could have optic neuritis, and possibly some red orange colour issue in my left eye.

    have become clumsy running into things and randomly tripping

    at the start I had an episode which I was bed ridden for 2 weeks and wanted to die. I couldnít even function and my muscles all stopped working. If I did something it would make me ill.

    lately itís progressed to my bladder and now struggle to hold anything in and itís always it urgent.

    i have 2 hemochromatis genes and have had venesections but it makes me very ill when treating me for it drops my red blood cells to low and puts me back into bed.

    im anemic yet have high ferritin(go figure? Someone that stores to much iron being anemic?)

    im Borderline RA but at titre 13 itís a maybe. Sometimes naproxen helps the pain in my legs.

    I have ANA antibodies

    no std, no active virus eg epsin, Ross river, Q fever etc.

    they say could be lupus but canít prove it

    keep mentioning MS, but cant prove that either.

    ive done CT scans, MRIs no lesions showing up, ultrasounds. All come back okay so far.

    EMG on hands, arms, legs and feet okay.

    have just been tested for myasthenia gravis, waiting on test results.

    lots of urine tests for all those type diseases around liver and badder which come back fine.

    my bloods are okay bounce around a bit but not to far out to say I have any issues they all correct themselves.
    b12 is fine vitamin D is low(I spend all day in the sun?)
    calcium has been low? I live off milk and cheese. Fine with bread etc. I have cut these out a lot at once stage but didnít seem to help.

    i vomit a lot, and red meat I canít keep down and no longer digest.


    Im lucky my work is good about it all, as Iíve been there 15 years, I either go into work or I donít and still get paid.

    They tried me on amitriptyline, this made feel like I had bugs under my skin constantly, have tried me on cymbalta which made me want to kill myself, what a horrible drug.

    ive gone back to no drugs as they impare my brain function and itís the only thing I have left.

    im not depressed at this stage but do worry what the continued limbo does to your mental health, I know it has changed me somewhat.
    Guess Iím trying to keep my brain active and in a good state as I see what mental health does to my workers and know your brain takes an active roll in your health.

    i have an eye appointment coming up with a eye surgeon/neurologist whoís trained in finding these things so hopefully can give me some answers to whatís causing my blurs etc.

    i have another neurologist appointment also coming up with someone new so hopefully can get some more answers

    to date I seen lots of specialists and they all say they canít help
    me, itís hard to find someone that gives you more than 5 minutes.

    Sorry for the massive spill, I just donít understand how you can have so many things wrong and go from a fully functioning successful bloke to feeling like your 90 , falling apart and no one has any idea what is wrong with you.

    the Australian healthcare system is stuffed, I canít just book an appointment Like some can overseas even though I have health insurance, health insurance is near pointless untill your in hospital, need to wait months to get in anywhere and always need referrals, no wonder people spend years before they get a diagnosis of anything.

    one thing is least my battery of scans and bloodtests have mostly been cover or partially covered by the government Medicare scheme.

    MS,lupus,myasthenia gravis, autoimmune or something neurological i really am beginning to understand peopleís nightmares, what people with disabilities go through and feel that I took for granted what I once had, unfortunately itís looking like I will never have that life back again.

    for all those other people in limbo donít let them tell you its just in your mind, that itís a virus and it might go away, keep chasing for an answer if you know itís not right and if someone only gives you 5 minutes donít give them your $$, donít be another number for them see someone else.

    #2
    Hello Kez ~

    Thank you for sharing your experience with us.

    You are dealing with a heck of a lot, and I'm sorry for what you're going through.

    Hoping for you that this new neuro will take the time and effort to figure out the cause of your symptoms.

    Please feel free to share how your appointments go, and what you find out.

    And also, you are welcome to come here and vent when you need to.

    Wishing you the peace and strength to get through this challenging time.

    Take Care
    PPMS for 24 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by Greenmachine View Post
      MS, lupus, myasthenia gravis, autoimmune or something neurological i really am beginning to understand peopleís nightmares, what people with disabilities go through and feel that I took for granted what I once had, unfortunately itís looking like I will never have that life back again.

      Hi Kez & welcome to a group that tries their best to understand their own sx as well as what others go through.

      I too, understand better what people with disabilities go through. A lesson learned late, having assumed robust health a given for years.

      It's different now and although I'm not physically the same as years past, I'm better for having empathy where there once was only a passing sympathy. So although we may not have our "old life" back again, we begin a new life with a better knowledge. We see what we are made of, what we owe ourselves, what we may still be able to do for others, albeit differently, but something. It's a small thing, but our response to adversity has value.

      Stay safe. My thoughts and prayers to you and our other friends in Australia.

      Comment


        #4
        Welcome Kez. I am sorry for all the unexplained symptoms and the never ending wait for answers. I didn't spend much time in limbo, was blindsided by a fast diagnosis. But when I read what people go thru in limbo, I think I was fortunate.

        I am sure with a young family, your worries are constant. Regardless of what the diagnosis may be, if you can, maybe look into some stress reduction techniques again. Stress can manifest into physical symptoms, which can complicate a diagnosis for your underlying symptoms. Besides, living with constants stress takes alot out of us. Reserve your energy for your family.

        I do hope you get both appointments and answers soon.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          I would like to think I have become a better person from it yes - it would be one positive thing I can take away.

          I am starting to see what people mean about the stress side. I prob didnít see a link at the beginning but are now seeing the link between my stress and increase in activity of my symptoms. mostly my movements, twitches and biting under my skin when my stress is elevated. Everything is always there itís just the depth that varies.

          one question I do have if anyone can give some insight on.
          i have not seen many people talk about body temp regulation, or found much on it.
          one of the first things was my body stopped regulating temp, I stopped sweating (used to sweat on a cool day let alone a hot one) before all this started.
          my body used to heat itself up very easy when cold.
          my partner used to keep herself warm with my body heat in bed.
          but she says Iím stone cold. I sometimes feel cold but not as much as she describes, Iím certainly a lot more pale then I used to be like the blood no longer circulates in my body.
          she says itís like sleeping with a dead body.
          Im interested if anyone has had this issue, understand everyone is different but Iíve found this has been a real strange one which I have not found much in-depth info on and tends to be brushed over by specialists.

          Comment


            #6
            Anemia can actually affect body temperature, lowering it. Is that a possibility? I was anemic years ago, pre- MS. I was pale, and cold to the touch.

            My sister in law is going thru it + she is so anemic it actually affected her breathing. I never knew it could do that. They though she had lung or heart problems, thankfully all clear though.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              Originally posted by Greenmachine View Post
              I am starting to see what people mean about the stress side. I prob didnít see a link at the beginning but are now seeing the link between my stress and increase in activity of my symptoms. mostly my movements, twitches and biting under my skin when my stress is elevated. Everything is always there itís just the depth that varies.
              It's good that you are aware of the effects of stress, Kez.

              I have certain symptoms that are turned up a notch, even from mild anxiety or low level nervousness.

              Originally posted by Greenmachine View Post
              one question I do have if anyone can give some insight on.
              i have not seen many people talk about body temp regulation, or found much on it.
              one of the first things was my body stopped regulating temp, I stopped sweating (used to sweat on a cool day let alone a hot one) before all this started.
              my body used to heat itself up very easy when colds
              The impaired ability to regulate body temperature is not uncommon with MS. There is a lot of info online about it. I can go from feeling uncomfortably warm to feeling uncomfortably cold (and vice versa) several times throughout the day.

              There are also other disorders that affect temperature regulation, such as endocrine diseases (diabetes, hypothyroidism, hypoadrenalism, and hypopituitarism) or central nervous disorders that affect the autonomic nervous system and the hypothalamus.

              Take Care
              PPMS for 24 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                in// sou

                I'm very sorry to hear about your declining health and the loss of your sense of good health and well being. I sympathize with all that you are going through and the toll that it takes in so many ways.

                I'm not familiar with the Australian health care system, but if it's possible for you to request treatment from a teaching/university hospital with a MS center or from a private MS Specialist in order to either rule MS in or rule MS out. MS specialist will typically spend up to hour on your clinical evaluation. A last word of caution?, not all "MS specialist" are 'created' equal, and what often distinguishes a highly qualified MS specialist versus one less qualified is the time spent during the initial neuro exam and clinical evaluation.

                Take care.

                Comment


                  #9
                  Hi Kez. Welcome to MSWorld.

                  Sorry to hear about your symptoms, your stress, your difficulty making appointments, etc.

                  Please take care of yourself as best you can. There are lots of things you can do while you wait.
                  Learn to manage, or prevent, stress. Consider meditation, mindfulness, deep breathing.
                  Exercise moderately and regularly, but listen to your body and don't push too hard.
                  Eat a healthy diet. Consider eliminating gluten, dairy and refined sugar, such as the Wahls Protocol.
                  Etc.
                  ~ 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
                    thanks for the replyís and kind words all, it does help.
                    it also helps to tell someone my story where they understand.
                    i tell friends and family, they try and are very supportive but donít fully understand what Iím actually dealing With daily.

                    My ophthalmologist appointment has been moved forward next Friday. This is good news as this lady works with MS clinics regularly. This ones a long appointment and have been told will take an hour and a half to fully assess my eyes.

                    funny enough, I got a call the same day and are now booked next Friday aswell to see a neurologist who has been head of a private MS and Neurology clinic that Iím actually going to late April.
                    This neurologist deals with Parkinsonís and movement disorders but has ran a lot of neurological departments so hopefully can at least direct me to the correct place.

                    finding someone who specialises in MS is hard where I live in AUS. But hopefully I should get someone trained in it when I have that April appointment.

                    im not confident that Iíll completely get the answers I seek, but itís a start.

                    Iím someone who finds problems for people and creates a plan to get them fixed, Iím impatient and like to have a plan drawn out. At least Iím starting to get that now, which does help lower the stress.

                    i have been exercising, doing things as normal, but have had to modify the length of time that I do things. What used to take me an hour will now take me a day. If I do to much I pay the price the next day or even a few days later it hits me.

                    i think at times I did push too hard, but I didnít know I was, as I didnít understand what I was going through. Iím used to getting things done without restrictions, but now Iíve modified every aspect of my life Just so I can cope with one day, thereís so many words I could use to describe it.

                    i no longer feel normal inside my body which is strange, I miss that normal feeling, itís a feeling of lightness, springiness and clearness almost like a drug, now Iíve got a concrete body and a mind that takes 5 minutes to process one simple answer itís almost laughable. I miss that refreshing feeling after waking up in the morning.

                    i try and find happiness in other things in the day now, not sure if I would be as strong without my kids and supportive partner. My family keep my mental side from going to dark.

                    i will let you know how my appointments go in the coming weeks.

                    Comment


                      #11
                      Originally posted by Greenmachine View Post
                      My ophthalmologist appointment has been moved forward next Friday. This is good news as this lady works with MS clinics regularly. This ones a long appointment and have been told will take an hour and a half to fully assess my eyes.

                      funny enough, I got a call the same day and are now booked next Friday aswell to see a neurologist who has been head of a private MS and Neurology clinic that Iím actually going to late April.
                      This neurologist deals with Parkinsonís and movement disorders but has ran a lot of neurological departments so hopefully can at least direct me to the correct place.
                      Good for you, Kez. Glad that things are moving forward.

                      Originally posted by Greenmachine View Post
                      i have been exercising, doing things as normal, but have had to modify the length of time that I do things. What used to take me an hour will now take me a day. If I do to much I pay the price the next day or even a few days later it hits me.

                      i think at times I did push too hard, but I didnít know I was, as I didnít understand what I was going through. Iím used to getting things done without restrictions, but now Iíve modified every aspect of my life Just so I can cope with one day, thereís so many words I could use to describe it.
                      Many of us here can certainly relate!

                      Originally posted by Greenmachine View Post
                      i try and find happiness in other things in the day now, not sure if I would be as strong without my kids and supportive partner. My family keep my mental side from going to dark.
                      Finding joy and happiness in family and friends, and the simple things in life, is key.

                      Originally posted by Greenmachine View Post
                      i will let you know how my appointments go in the coming weeks.
                      We'll be here for you Kez. Good luck!

                      Take Care
                      PPMS for 24 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #12
                        Hello Kez,

                        Our hearts go out to all of Australia because of the devastating fires and the suffering the fires have caused people and wildlife. I support WIRES, the Australian Wildlife Rescue in a small way but small gifts combined can go a long way and WIRES is totally worth it, IMO.

                        At the risk of blasting too much at you considering all the health issues you are facing presently... I'm going to throw something out there because I would want someone to do the same for me.

                        You likely have never heard of Low Dose Naltrexone (LDN). There is superb info at this site about LDN so I'm not going to present that info in this thread. I mention LDN because it may provide some relief for your symptoms, Kez. Since LDN is harmless (there has never been a serious adverse event recorded involving LDN), since I take it myself and have for years, since I researched LDN for my own interest, compiled a 120 page review of literature and discussed it with my PCP while she reviewed my hard copy, I am quite comfortable mentioning it to you.

                        If, after learning what it is and what it does, you decide you may want to try LDN, you can source it from many places. There is a very convenient site, and entirely trustworthy, IMO, which sells 30 caps of 2 mg of LDN for $37. They have LDN doses in .5 mg increments but 2 mg is a dose optimal for myself and many others. 30 doses, or 30 days worth is enough to know whether it is having any beneficial effect, or not.

                        Dr. Jill Smith at Penn State trialled LDN in children with Crohn's disease. The FDA gave approval and the FDA does not give permission to test drugs in children willy nilly. That should impart the idea of how safe LDN actually is.

                        I have no financial, or any other interest in any site or entity selling LDN. If anyone considering LDN wants to try it they can google NaltrexLow and obtain it, if they choose. Normally, LDN is taken just before bedtime.

                        It is not a miracle cure for any disease! Many people experience no change by taking LDN but most people with MS using LDN do report benefits.

                        Here is a quote from Dr. Anthony Turel's report regarding LDN used by 215 MS patients at Penn State...

                        "Most of the MS patients began LDN therapy because of fatigue. Nearly 60% (n = 128) of patients receiving LDN for any period of time reported a reduction in fatigue with LDN therapy. Fifty of the 215 patients commented that LDN produced no relief from fatigue and 4 patients stated that LDN increased their fatigue levels. Regarding their quality of life and the perception of LDN's effects on MS, 130 patients (60%) stated that LDN stabilized or improved their disease and 75% of the patients reported improved or stabilized quality of life..." End Quote

                        Kez, I have no idea if you are someone who might be interested in LDN. But it is safe, inexpensive, and it might work, especially to improve fatigue. To me, LDN is quite appealing based on those 3 characteristics. And, I will honestly state on my mother's soul, I have met and spoken face to face with a few people who achieved truly remarkable results using LDN.

                        My heart is with you in your present difficulty and my great desire is for your highest good in your health, family and in your country, also. God bless you and God bless Australia.

                        Comment


                          #13
                          Yes the fires are unlike anything Iíve seen before. Iíve seen similar smaller fires destroy area quickly but the difference with what has happened over the last few months is the shear scale of it all.
                          australia has always had fires, always had bad ones some years but unfortunately the area these fires are wiping out is scary. Unfortunately itís not going to change with government inaction and continuing droughts.
                          WIRES is a good cause the animals canít rebuild without help from us thereís just far to much damage to the environment. It will grow back it always does, our trees need fires to shoot and germinate, but itís done a lot of damage to very old trees and will take longer then our regular fires which hurts the wildlife.

                          ill keep LDN in mind. I did have a read, being an opioid it wouldnít be my first pick but could look past that if things get bad enough, especially given the experiences Iím having with typical nerve/depressant drugs.
                          currently I am not taking anything as I donít want to mask any symptoms at risk of impacting some sort of diagnosis / telling me what I do or donít have.

                          given our regulations LDN would need to be purchased over the counter here. wouldnít imagine it would get through our customs especially being an opioid.

                          i do thank you for your advice.

                          Comment


                            #14
                            You are welcome, Kez

                            I should correct that LDN is not an opioid. In fact, it is at the other end of the spectrum, being an opioid receptor antagonist.

                            Naltrexone was developed to counter overdoses of opioids and heroin in particular.

                            Low dose naltrexone (LDN) prompts the production of endorphins after temporarily blocking opioid receptors for about 4 hours. That's why most people take LDN at bedtime. By morning, the LDN is gone, however, the production of endorphins prompted by the temporary and very mild block of opioid receptors continues throughout the day.

                            It is important to understand that LDN is not an opioid; not at all. In fact, it is just the opposite, it blocks the effect of opioids. This brings up an important point... if someone is taking an opioid LDN would only diminish the effect of the opioid so would be contraindicated in that situation.

                            LDN's brief blocking of opioid receptors is the mechanism by which it works to prompt the body to produce endorphins which are hugely beneficial.

                            First, I want to explain how LDN increases endorphins.

                            Naltrexone is an opioid receptor blocker. When a small dose (thus LOW Dose naltrexone) is taken it blocks receptors for about 4 hours. Our body is still producing endorphins but because the receptors are blocked, it actually thinks it isnít producing any endorphins and as a result goes into overdrive to compensate for what it believes isnít happening (but is) producing more endorphins.

                            Dr. Maria Gironi published the following results of her clinical trial of LDN in MS where she measured endorphin levels throughout the six months of the study.

                            3 months - endorphin levels increased by 30% from when they started the trial

                            6 months - endorphin levels increased by 60% from the beginning of the trial

                            Besides making us feel better are there other notable benefits of increasing endorphins? Oh, you betcha!

                            LDN elevates met-enkephalin (often referred to as opioid growth factor, or OGF) which has huge, huge benefits for those dealing with autoimmune/central nervous system disorders and some types of cancer. One researcher I have met and spoken with said she observed that LDN increased OGF 12 to 15 times. You can google met-enkephalin or OGF and discover from multiple scientific sources what powerful benefits it has.

                            Iím going to include some links for any who may desire them.

                            First Gironiís trial...

                            http://www.ncbi.nlm.nih.gov/pubmed/?...iple+sclerosis

                            And, then an article which helps explain LDN...

                            Low-dose naltrexone (LDN): Tricking the body to heal itself
                            https://www.sciencedaily.com/release...0902133047.htm

                            Comment


                              #15
                              My bad, pays to read thing correctly not skim over them.

                              I see they use it for fibromyalgia, my mother has fibro, has been mentioned for me but they canít make a decision on that either.

                              i know effects on people are different with drugs, my mother takes amitriptyline and Wakes up tired and not clear, it had the same effect on me. This is half the reason Iím not taking anything anymore and putting up with symptoms, I still work and struggle to function on other drugs.

                              do people from what you have seen wake a lot clearer on LDN vs some others?

                              Comment

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