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    Old 04-21-2014, 03:23 PM   #1
    chooky01
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    possible MS.

    Hi all,
    I am in mid dx, waiting to find out what the outcome will be. I was initially dx with graves disease, had the radioactive iodine treatment, then went to hypothyroid instead of hyper, which brought on similar symptoms (so I am told) of MS, ended up in Hospital even, these were my symptoms according to Hospital report. (mind you I was told to get to the Hospital asap as my GP suspected a stroke at the time): 3 week history of generalised malaise, lethargy, and bifrontal headache associated with 2-3 week history of left facial droop, right arm weakness and clumsiness and dysarthria. Found to be hypothyroid following a recent radioiodine ablation therapy.
    At the hospital they began to treat my hypothyroid with thyroxine (spell check) high dose and alot of the symptoms have subsided a little, note, a very little.
    At the hospital I was given a CT scan, a MRI scan and a spinal tap with the following results:
    Best appreciated on the FLAIR sequence, there is periventricular high signal seen together with scattered foci of high signal within the deep white matter seen in a pericallosal distribution. This is more pronounced than what would be expected for a patient of stated age of 43 yrs
    conclusion:
    Best appreciated on the sagittal FLAIR, there are multiple T2 hyperintensities seen at the collosal septal interface with a perpendicular orientation. These do not demonstrate significant enhancement. the main differential for this would be that of demyelination. Progress imaging is recommended.
    MRI suggestive of idiopathic demyelination but no active lesions, further invstigation once hypothyroidism resolved.

    soo, my neuro believes that some of my symptoms have nothing to do with the hypothyroid but wants to rule out other things, says she is leaning tward MS but will not give me a definitive dx till I go for more tests

    I have had numerous blood tests that from what I read on them rule out lupus and recently went for an angiogram CT scan of my 'circle of willis' that my neuro says came back fine with no problem there.

    Since then I have experienced: numerous times of numbing of my toes, and a vibration that started in my toes but at times expands to the whole bottom of my foot and half of the top of my foot, dizzy spells that have subsided to very mild, pain in my hips and buttocks and left leg down to the knee but seems muscular, does not feel like it is bone pain, mainly in my left hip just along the butt hip area and moves across to the right side from time to time sometimes also lower back. excruciating pain across lower ribs some mornings (both sides) and I've slept in a very comfortable bed for two years now with no problem and in the exact same positions I've always slept in. muscle weakness in arms after use for a short time, ie while drying my hair, typing etc, fatigue in the afternoons, but not enough to want to sleep like earlier, more I just need to lie down for a few hours because I feel sluggish and drained, memory problems in that short term memory seems scattered and my partner says I don't listen to him when he talks to me cause I forget or do not know what he said to me when he asks if I was listening.. even though I am positive I was listening at the time, just cannot recall what he said or only partially recall, slight numbness to my face but not all over only 'spots' not as bad as the initial droop in eyelid and mouth that has my neuro worried that it isn't all thyroid related, tingling in hands and feet mainly left side etc pins and needles almost always and numbness instantly if arms or legs are raised or tucked under for very short periods of time leading to pins n needles when lowered or straightened.. sorry this is a long post by the way..pins and needles all down the left side of my body on two occasions when I moved my head, frequent urination, yet only urinating in very small amounts, constipation at night and opposite in the mornings.

    Sooo... I guess my question is, does this sound like MS and could my neurologist be correct in indicating it is 'possibly MS' and if not why would a neurologist state such a thing if they were not already partially sure of the dx?

    Being in limbo for a dx is very frustrating!

    Again sorry this was long.
    Thanks for reading
    chooky

    Last edited by chooky01; 04-21-2014 at 03:24 PM.

     
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    Old 04-21-2014, 05:24 PM   #2
    MSJayhawk
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    Re: possible MS.

    Chooky,

    Welcome! Good on'ya for finding us!

    Your doctor needs to methodically eliminate all MS mimicries before arriving at MS and then the diagnosis will depend upon meeting the criteria according to the Revised McDonald Criteria.

    It looks like you are well on your way to getting an answer. While I can say, yes it sounds like MS, I could just as well point out additional mimicries. It is not easy and patience can wear thin, but I would cay that you are in good hands with your current doctor. I certainly do not want you to have MS. There are over 400 known MS mimicries, BUT no single specific test to indicate MS.

    As you are headed into your winter, you might find that the shift from autumn to winter might be a seasonal trigger for you. The week of December 21 is one of my triggers for severe fatigue.

    __________________
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    Old 04-21-2014, 06:04 PM   #3
    chooky01
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    Re: possible MS.

    Thanks for the welcome MSJayHawk,

    Yes, my neurologist is really good and nice toboot, not as arrogant as some of the dr's I've seen who seemed to palm me off as either a hypochondriac or just palm me off to someone else, found a great GP also.. My endocronologists on the other hand, well, leave alot to be desired.

    I have done alot of looking online about symptoms of MS and where I may not have the extreme symptoms such as optic neuritis etc, I do find the symptoms a little bothersome, and I think my partner does too, have taught him just to say, it's ok darling you'll be alright and tap my arm at the same time lol, is our little joke I guess.
    I'm not totally stressed out, but find the whole dx process a little drawn out, and getting an appointment with my neuro almost impossible, even though she said she would try to fit me in. Fortunately, she's one of the top neuro's at the hospital in Sydney but more involved with Stroke victims rather than MS.
    She did tell me if it ends up that it is MS. she will refer me to an MS. neurologist/specialist and will go from there.
    I know alot of people with autoimmune conditions can indeed have other autoimmune conditions ontop of the ones they already have, and have heard MS is also an autoimmune condition.
    My blood work as I said has ruled out lupus and Sjogren's syndrome but shows abnormal immunoelectrophoresis IEPG and they want to rule out the presence of monocolonal free light chain.. though not sure what that means lol
    I am not too worried if it is MS that I have ontop of the hypothyroid condition, at this point of time I am more interested in finally getting a dx of anything so I can get on with things and quit being in the land of limbo. Atleast I'll have a name to what is wrong that I can inform my work about instead of giving them a "well, they are still doing tests and I'll haveto wait and see" response to their queries.
    Work is good, but I've had soo much time off that I'm thinking I am on borrowed time, atleast with a dx I can let them know, hey, I'll haveto have one or two more days off for this or that, and I'm ok to fully go back to work (at the moment I am only doing 4hrs a day, instead of 10 that I usually do, more because of concerns that what put me in hospital in the first place may happen again if I am doing the usual hours, till that is ruled out, 4hrs a day it is)

    I haven't found out if they found anything in my spinal tap as yet, but heard it can show clear even when it may not be, false negative or something like that

    But the spots on my brain MRI that my neurologist showed me, was more than alarming when I seen them, when she said spots I figured it would be one or two, but there were heaps, and she stated the areas they were in were consistant with MS, both my partner and I when we seen the scan were quite taken aback by them.

    ok I guess I'm rambling so I appologise, I tend to get long winded at times lol

    I appreciate the reply, thank you.

    I guess I should be a little more patient hehe
    Thanks again for the welcome, will come back when I hear more from my neurologist and update, hopefully not as long winded as I am now lol ***breathe chooky .. breathe***

    be well
    chooky

     
    Old 04-21-2014, 07:36 PM   #4
    MSJayhawk
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    Re: possible MS.

    chooky01,

    No worries.

    Stroke evidence would have already been noted and is one possible mimicry. I am glad you have a great doctor who is willing to get you to an MS Specialist. That is a great blessing!

    Symptoms can vary and Optic Neuritis (ON) affects about 20% of MSers. My first ON did not present until 20 years after my diagnosis.

    Your blood work clears many diseases specifically which is great news for sifting through your possible concerns.

    Thyroid problems can fit well as an MS mimicry, but tests can eliminate this concern. However, you can have MS in addition to thyroid problems. Your doctor can focus on your non-thyroid symptoms which can allow some further investigation and clarifications.

    An LP or spinal tap can indeed be beneficial in eliminating known mimicries. Of MSers who have had an LP, 85% will show o-bands (abnormal) while 15% show no o-bands (normal). I have had 2 LPs 20 years apart and neither has been abnormal. The determination of MS is not based upon the spinal tap results, but it is a useful tool in the diagnostic process.

    It is good that you are in an area of Australia with MS Specialists. Should you move in the direction of that diagnosis, you should be in fine shape. Long term follow-up can be handled by your current doctor since there appears to be some great bedside manner. Hopefully you can find a similar personality in an MS Specialist if needed.

    Sit back, try not to worry too much and hopefully you can get back to work. I managed a 20 year career (with several trips to Australia) before my MS finally sidelined me. I hope you can go far!
    __________________
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    Eternally blessed and eternally optimistic!<><

     
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    Old 04-22-2014, 03:08 AM   #5
    MSNik
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    Re: possible MS.

    Chooky01
    It sounds like you have a very good doctor working with you from an MS standpoint. And, it sounds like they are doing everything they should be doing to get this formal dx.
    Unfortunately, to me, it does sound like MS, as many of your symptoms are very similar to my own. You mentioned the arm fatigue when you dry your hair...that was my first symptom which said something was wrong. Unbeknown to me, I was developing pretty significant heat sensitivity. I would get out of a hot shower, and blow dry my hair and find myself in tears on the bathroom floor, sweating profusely and weak....I later learned that was heat sensitivity. I couldnt take the hot showers I was used to taking. As soon as I started turning the water down to tepid, I saw an immediate improvement.
    Have you considered cooling your body down before getting out of the shower or taking a cooler shower, just to see if it makes a difference?
    Alot of your other symptoms are very similar to mine as well.....testing takes time and in order to rule out everything else , its quite frustrating...but it sounds like you are in good hands and on your way to answers.
    Please keep us updated and I hope you start feeling more like yourself soon.
    Nikki
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    Old 04-22-2014, 01:25 PM   #6
    chooky01
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    Re: possible MS.

    Hi MSNik

    Thanks for your reply =)

    Being previously hyperthyroid (now hypothyroid) I have always had an intolerance to heat, though it has subsided a little since being dx with hypo, now it seems the cold gets to me as well.
    But I have noticed, at work it gets quite warm in the area I work, ie room temperature and find by the end of work, my muscles, tingles and a slight eye problem (blurriness and small flashes in my left eye) tend to be more prominent than when I start work. Fatigue also kicks in quite quickly.
    I actually haveto shake out my arms to relax the muscles, although it doesn't work that well unless I rest them, also my dizzy spells tend to come more often at work in that enviroment (warm temperatures in the office) than when I am home where it is a little more cooler.
    Yesterday at work, I had three dizzy spells in the 4 hours I was there, which I was a little worried about as I haven't had a huge dizzy spell for a couple of weeks, the dizziness had tapered off a little so that the room didn't spin, I was just unsteady in the last few weeks but yesterday, I had to stop what I was doing at work and hold onto something when I was standing. Kind of concerns me as I ride a piaggio scooter to and from work. Is good we are heading into winter here as I could cool down before riding home (15min ride to and from work)
    It also took till thismorning for the pins and needles in my left arm and left leg to subside after coming home from work yesterday.
    So I put it all down to the temperature at work, before I even read your post.

    My neuro is very nice, just seems getting an appointment booked with her is like pulling gold teeth from a gangster with no anesthetic lol, I am hoping after the easter break, she might be more available.. fingers crossed.

    I've read alot of people's symptoms and I do find similarities, and to be honest am almost resigned to the fact it just may be MS, as from what I have learned, it just fits better than the other conditions my neuro says could mimic, but yes, am going to wait for the confirmation, because you never know huh.

    I was thinking back the other day and realised over the years, alot of the more prominant symptoms I am experiencing now I have actually experienced in some form or another in the past, just put it down to other things, or ignored them as minor and not needing to worry about them. You get very busy in life, when little things of no real significance appear, you tend to fobb it off, but looking back now, I guess I realize, these symptoms have been going on longer than what I thought.

    I remember waking in bed one night, and wondering what the heck was in my bed, I felt with my right foot that something was next to it and couldn't figure out what it was, kind of panicked, and when I threw the covers off, what I was actually feeling was my other foot, it was just very numb and I couldn't feel that I was touching it with my non numb foot. <~this is just an example that has happened a couple of times over the last 10-15yrs or so.. needles to say, it is a freak out thinking something was in your bed hehe then realizing it was just your own foot lol.

    I am glad I found this site, you all sound very nice and it is great to chat to those in similar circumstances

    I will keep all posted as I come to know more

    be well
    chooky =)

     
    Old 04-22-2014, 04:27 PM   #7
    MSJayhawk
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    Re: possible MS.

    Chooky,

    When I was first diagnosed in 1982, my neurologist (an MS Specialist) helped me go over my history leading up to my diagnosis. Some old shoes with scuffed toes was my only hard evidence of foot drop which is something that I still have. With that, I was able to place 14 yo as my earliest remembered symptoms.

    Many people find too that they have had symptoms which were explained away and were easily forgotten when the problem disappeared with no collateral damage.

    I do not know what they have in Australia, but Piaggio has a three wheel scooter available here in the US (two front wheels). This could alleviate any concern with dizziness in traffic. I know that two wheels are no longer something I can ever attempt. I know that in Japan their is a Honda, Yamaha, and Suzuki scooter with three wheels with the 2 wheels in the back and is self-righting (the rear wheels remain flat on the pavement).

    You might benefit from a passive cooling vest which you can wear at work. I have to change out my ice packs after a few hours. You might need to have a set of packs which you can keep chilled and allow you to change out at work. I do not know where you would stand regarding workplace rights for a disability. If there is a way for you to do a lateral change to accommodate your problem, you might look into this.
    __________________
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    Old 04-23-2014, 03:10 AM   #8
    MSNik
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    Re: possible MS.

    Chooky,
    Hi. You have such classic symptoms that its a good thing you are preparing for this, I truly think you are getting a MS dx very soon.

    You wrote "I actually have to shake out my arms to relax the muscles, although it doesn't work that well unless I rest them". The reason for this is that MS isnt a muscular disease, but a nerve disease. By shaking them out, you arent really waking them up or relaxing anything, and could actually be putting more pressure on the already compromised nerves. Try not shaking them out, but lightly rubbing them from shoulder to wrist...see if that helps. Another thing I want you to try is taking a ICE COLD washcloth or better yet, invest in a cooling towel, you can get them at any sporting goods store- and keep it around the back of your neck at work. If you use the cooling towel, it will stay cold up to 3 hours, and you can re-wet it and start over a few hours later and again before you jump on your bike to go home....keeping the back of your neck cool- SHOULD make a difference for you at work. It should reduce the dizzy spells and reduce the muscle fatigue. Everything you are writing points to heat intolerance.

    Like you, I do much better in the winter months. Unlike you, we are headed into summer here, and already with temps hitting in the high spring like weather, Im suffering already and dreading the next 3 months.

    Try keeping the body cool....let me know if it helps?
    Nikki
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    Old 04-23-2014, 02:07 PM   #9
    chooky01
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    Re: possible MS.

    Wow thanks MSJayHawk and MSNik,

    You are both really helpful
    I actually have a heating pad thingy that can be put in the freezer that I used when I had shoulder surgery early last year, and never thought to use it, I think I'll leave it at work in the freezer for use when I get to work.

    Unfortunately scooters are a little pricey here so opting for the three wheeler is almost impossible financially, I do have my learners license for the car but have had to put that on hold the last few weeks but hopefully I can get back to it in the next few weeks (if the dizzy spells subside again) and then have a more stable vehicle to get to work in. I was a late bloomer regarding driving, am more a motorbike kind of person than a car person so got my bike license first.

    Initially I thought the pain in my arms was due to carpel tunnel but found it strange I had it in both arms and not the wrist, so was using tight warmth bands to alleviate the pain.. obviously.. it didn't work so gave away that idea pretty quickly, wasn't till I went to hospital they told me it wasn't carpel tunnel, pheww..I had already had a shoulder injury at work due to heavy lifting and went through a very painful shoulder surgery that put me off work for months, last thing I needed was more surgery for carpel tunnel.

    Work is really accommodating, they really like me there, not tooting my own horn but they say I'm one of their favorites work ethic wise, so they go out of their way and have gone out of their way to make sure I am comfortable and have the assistance I need with certain things, they were a little surprized by what has happened but are allowing me to work less hours till I can get on top of all this, but I can tell their patience is a little stretched as they have to hire additional people to compensate on a casual basis.

    A strange story, the week I ended up in hospital, a woman who works right next to me also had a TIA which they were calling a mild stroke even though it wasn't and then in the same week a fella who also worked next to me went into hospital with gillian barr's syndrome, all of us had some form of neurological attack that put us in hospital within the space of a week.. two having an attack is strange in the same week but three seemed to me more than suspicious so I drew it to work's attention and they are sussing out our work environment just in case.

    Personally I do not think any are related to each other and that it is just a strange coincidence but atleast they are checking it out.. more so to cover their butts but eh, you never know. So far they have not come up with anything that may have caused all three of us to have a reaction to anything. Which is good now I am back at work.

    My partner is occasionally driving me to work, so I do have that back up if I do not feel 100% to ride myself in =)

    I have rung my neuro every week to see if I can be booked in for that illusive appointment they promised me, but still to no avail, but I'm still trying hehe

    I haveto say, I am glad I found this site, thanks for the help, will keep you both informed.

    greatful
    chooky =)

     
    Old 04-23-2014, 05:40 PM   #10
    MSJayhawk
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    Re: possible MS.

    chooky,

    No worries.

    Yep, vehicles can get pricey there. If a car is down the road, you might need to think about hand controls. I used to have a manual shift Jeep, but nowadays I have an automatic truck (Ute). Hand controls are only in vehicles with automatic transmissions.

    I am glad you have a back up ride. It is odd that three of you at the same place would be ill for similar concerns- MS like mimicries. There was a time (and keeps repeating) where Epstein-Barr virus was considered linked to MS, but nothing has ever been proven. Guillain-Barré syndrome is quite rare and can be fatal. It also attacks the CNS myelin sheath like MS. I hope your co-worker does not have Guillain-Barré. Kudos to your employer for looking into the possibility of an environmental concern. All three of you basically fit into the MS possible category. Guillain-Barré and TIA can be identified, whereas MS cannot.

    You might wish to check with the MS Society in Australia to see if they can assist you in any way. At the very least, it would give you another resource upon whom to call on should you need such assistance.
    __________________
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    Last edited by MSJayhawk; 04-23-2014 at 05:42 PM. Reason: typo

     
    Old 04-24-2014, 03:35 AM   #11
    MSNik
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    Re: possible MS.

    Chooky,
    That is quite strange that three of you all had neurological disorders appear the same week. Please make sure that there isnt anything enviornmental going on in your office! Im glad that you have support however.
    Continue to get answers and please keep us posted and definitely try that freezer thing! It sounds to me that you are definitately having some heat sensitivity, making you weaker and less able to do things you should be doing.
    Prayers your way!!
    MSNik
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    Old 04-25-2014, 03:01 PM   #12
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    Re: possible MS.

    Yep MSJayHawk, am looking into MS Australia, is good to know they are there. My workmate / friend who had Guillain-Barré syndrome recovered well, but spent a week also in hospital, they said he was lucky, some recover well and never have another episode (if you can call it that) and others end up on life support, he is back at work also now, and my workmate who had the TIA =)

     
    Old 05-01-2014, 03:22 PM   #13
    chooky01
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    Re: possible MS.

    New update..
    Hi all

    Just thought I would update, everyone, finaly I got onto my neuro (through an email that my partner wrote on my behalf) and she replied, she's going overseas next week, and appologises for the inconvenience of the duration between appointments, and assures me today her staff will call with an appointment for when she gets back, so I am wrapped, just knowing I'll have an appointment will be a relief in itself. It beats sitting around wondering what's going on I can tell you that.

    Work update...
    I stated that work was looking into the reasons why three people seemingly had episodes of simular experiences... Well, now it is 4 people and the union has gotten involved in order that an official investigation (not just a supervisory investigation) with the occupational health and safety mob is done, they know that all 4 of us have underlying conditions but are looking into whether STRESS has contributed to our episodes that have put all 4 of us in hospital. If Stress seems to have contributed, then the union is looking into reinstating all the time off we had to take because of sick leave, and annual holiday leave we had to use to cope with our conditions, and we will get all those days back, regardless if we were paid for the time off or not (and no we will not haveto pay back the days we were paid for being off work), soo it is all good news on the work front, is good to know we have a good working union and staff that actually care about their workers wellbeing and situations.

    okies that's it for the latest update.. smiling here on both counts

    =) =)

     
    Old 05-02-2014, 03:14 AM   #14
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    Re: possible MS.

    Chooky,
    That's great about the Union getting involved and the possible outcome. But I also hope they explore things beyond stress. Other mitigating factors, such as environmental, could cause this as well. Is there mold in the building? Is there a problem with the ventilation? Does the building have chemicals in it, which might be causing neurological damage? IS someone cleaning it with these chemicals? There are so many things to consider- maybe you can ask about this, as well.

    Im glad you have an appointment being made! That's also great news! Let us know when you are going...
    Nikki
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    Old 05-02-2014, 07:19 AM   #15
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    Re: possible MS.

    Chooky,

    Great update. Congratulations. With 4 people developing problems within the same time frame and workplace, this would appear to be a statistically significant event which needs investigating. I hope that for all involved that answers will be found ASAP!

    Again, congratulations. I certainly hope that you get an appointment at the earliest.
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