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    Old 07-11-2015, 11:57 AM   #1
    Vasoka
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    MS symptoms, don't know what to do

    Alright, I've been meaning to write a question here since a while - and here goes. I'm a 20 year old male who since 4-5 years has been dealing with something which, at least I, am sure is Multiple Sclerosis. I have been to several neurologists and all dismissed me, pointing out the reason for my issue to be my very sedentary lifestyle (I am a computer programmer and generally deal with computers a lot), and my past problems with anxiety. I believed this for some time, naturally - but lately things have been escalating.

    I have had 3 MRI's, 2 of the brain and 1 of C-spine, the first two were 2 years ago (brain and c-spine), and the last was 8 months ago - brain, again it was clear.

    Now, let me start off by saying that I indeed have a very sedentary lifestyle, I can spend days and nights working without going out or moving too much, sitting with quite the messed up posture at times - and I indeed have had problems with anxiety in the past, although lately I've reached a conclusion that a lot more is happening.

    Symptoms:

    4 years ago ( the start of it all) - 2 weeks of burning pain in legs which was worse at night, it got contributed to sitting too much/inactivity/bad posture/waist problems and the fact I might have sprained something, due to the fact I was going to gym at that time doing heavy weight lifting.

    3 years ago - generalised tingling/prickling/heat/cold sensations in different parts of body which initially followed no patterns whatsoever, they were generalised and happened in a period of extreme stress, but since then they have just stayed and have been here pretty much every day - the tingling is best described as a "ticklish" feeling - this got contributed to anxiety due to it's nature and the way it presented itself.

    2 years ago - I have had periods of my left side feeling numb (most problems are on my left side of body), even if the numbness never involved any sort of loss of sensation - i could feel just fine and there was no difference between my two sides, it was sort of like heaviness and tightness and general feeling of paresthesia on the left side - I also used to get headaches on the left side of my head, which were diagnosed as cervicogenic headaches due to static posture in front of computer - and my neck problems were said to be dealing the rest of the issues down this side as well. (Numbness was on and off following no particular pattern as well)

    1 year ago - I started getting something very weird with my vision - in rooms with flourescent lighting, i will see my vision flickering/flashing for a while as if someone is flicking the power switch on and off, and at other times simply flashing/pulsating for a while (It has -only- happened in artificial light, never during the day) - sometimes I have severe stinging in my eyes together with this. I have never had anything close to Optic Neuritis or pain in the eyes which comes with it, nor loss of color vision etc - and the flickering/flashing is in both eyes, so that got attributed to anxiety/or too much computer.

    1 year ago - After a fall from a chair on my waist (i am not sure if this was the reason), a day after or so in the shower, I began getting a pronounced tightness around my waist and up my abdominal muscles, as if they were spasming - the abdominal muscles were very tight and tingly, and it felt as if i have a tight belt strapped around my waist. - This continued for a while, then disappeared to a CERTAIN EXTEND, but it has been coming on and off since then. Tightness around the waist and tingling, like a belt around it - also pain sometimes, sharp pain. I DO have troubles with my waist and lower back pain due to bad posture/too much sitting, but this certainly sounds like the "MG HUG" to me.

    Those are the main symptoms, together with a plethora of more minor ones which I don't quite remember, however - what really worries me is this:

    My problems - the tightnening around the waist namely, appear to come back when I heat up or am physically active - if I am outside in the heat having a brisk walk, my waist will start hurting with sharp stabbing pains for a few seconds, then disappear (has happened once or twice), and general the tingling will come back as well (the one around the waist, not the body one) - I do not know if it's due to the WALKING itself, aka physical activity which might be harming my problems with the waist even more, or if this is MS heat sensitivity.

    I have also noticed that the episodes of flashing vision sometimes happened when I'm in the shower and having a really hot shower, which also freaked me out majorly.

    I am also having a feeling in my left leg which is like "tightnesS", that's the best way I can describe it - it just feels tight. I have no problems moving it or walking of any sort, nor is the leg weak, but it just feels tight - yet this coincidences with the fact that I have a lateral pelvic tilt on that side, which would technically make this leg a bit shorter than the other one, and the tightness is really only felt when I walk - as if the leg is stepping somewhat heavier than the other one.

    So.... here I am, not knowing what to do anymore. People keep waving anxiety and my sedentary lifestyle in my face and saying that's the reason for all my problems, yet what has been REALLY bothering of late has been the heat sensitivity. Coincidence? I don't know, or maybe brought on by my own head and anxiety? Can't tell. I am writing here with hope to get some answers or guidance on what should I do.

    I apologise for the long post and thank you all in advance.

     
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    Old 07-11-2015, 12:33 PM   #2
    MSJayhawk
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    Re: MS symptoms, don't know what to do

    Vasoka,

    Welcome.

    Anxiety is a major MS mimicry and uncontrolled it can debilitate like MS. Some of your issues could be due to your job. If you add exercise to your daily life, low impact to be safe to start, track your symptoms and see if there is any change. You want to compile some objective evidence.

    MS symptoms will generally strike and remain for 24+ hours. If you have symptoms which come and go, put those into a separate category for your doctor. Any pain due to MS would not likely respond to any OTCs and many MSers do not get pain relief from prescription pain meds either.

    With your MRIs, please not that the MRI is not a test for MS. While you shared that the MRI was clear, who read the image? Did the doctor rely on the radiologist's write-up?

    Nowadays the diagnosis for MS follows, or should follow, the Revised McDonald Criteria. There are over 400 known MS mimicries. For a proper diagnosis, these have to be eliminated. With your anxiety, you might need to have this treated before further evaluations can move forward. Anxiety can be a standalone problem or it can strike in tandem.

    An MS Specialist or a doctor with MS experience should evaluate you. With your heat tolerance problem developing as of late, you might seek out an MS Specialist for another evaluation. For me, my heat tolerance issues did not develop until 20 years post diagnosis (25 years post disease presentation). Each MSer's symptoms can vary and a specialist offers you the best chance for getting an answer.

    Do you have MS? With a clear MRI, the Revised McDonald Criteria has '2' lesions at a minimum in order to consider. There are MSers whose initial symptoms present without lesions. They comprise about 5% of MSers. Again, a Specialist can best assist you.

    Given that you are indoors a lot, have you been tested for any vitamin or mineral deficiencies? B12 and D are two vitamins which can mimic MS when they are deficient.

    I am not summarily dismissing you. See an MS Specialist and get the answers you need. There is no test specific for MS, but the experiences of someone in diagnosing MS can go a long way towards getting you a definitive resolution.

    If you have questions, please do not hesitate in asking. We are here to help.
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    Old 07-11-2015, 12:53 PM   #3
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    Re: MS symptoms, don't know what to do

    Thanks for the answer, my MRI were read by a radiologist and several neurologists. One of the neurologists I have seen is supposed to have experience in MS. Reading my symptoms, do you actually think that this sounds like MS? Can the reason for all those things be indeed anxiety/prolonged seating? Sometimes I think the "heat sensitivity" is in my head, or at least others make me think so. Thanks again.

    P.S - also forgot to mention, interesting enough, the tightness which I experience when walking outside in the heat is not present during hot showers, even if I take a -really- steamy and hot shower. I don't get any tingling/weakness/brain fog after it or anything of the like as well.

    Last edited by Vasoka; 07-11-2015 at 12:55 PM.

     
    Old 07-11-2015, 12:57 PM   #4
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    Re: MS symptoms, don't know what to do

    I have not been tested for vitamin B I think, the neuros and other doctors I have seen are all in consensus that my problems come from anxiety/too much sitting. I am not sure if I can see another doctor now, seeing as I have already seen about 4 neurologists. The MRI 8 months ago (which was about 2 years after the first MRI of the brain), came back clear as well - it was read by a good radiologist in my city in the main hospital, and the scan was done particularly for MS.

    Last edited by Vasoka; 07-11-2015 at 12:59 PM.

     
    Old 07-11-2015, 01:52 PM   #5
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    Re: MS symptoms, don't know what to do

    Vasoka,

    Your MRI will be read by the Radiologist, but it needs to be independently read by the MS doctor.

    As to your heat tolerances, for me, outside exposure brings a more rapid onset than a shower. If the humidity is high, I can "feel" the problem striking within minutes. If unchecked, my body quickly overheats, my energy drains, and I need to cool down ASAP. Depending on exposure, it might take me a few hours to an entire day to recover.

    Heat sensitivity is literally in our heads! That is, out "thermostat" is located therein and is designed to combat heat and cold and regulate our temperature. MS can interrupt these signals for regulation. Additionally, heat can cause neurons to stop firing. I use my heat weakness to block pain in my lower back and sciatic nerve. Each year I have a period of time when this pain presents. My only remedy has been a heating pad applied at the point of pain. This remedy does not work for everyone.

    I think that if you see a single neurologist with MS experience and the diagnostic guidelines have been followed, then you should have a definitive answer. Anxiety is a wild card. I would encourage you to look into this. Anxiety treatments can be medicinal or oral counseling, or a combination of both. A neuro-psychiatrist could be consulted in this before any treatment. If you start a treatment for anxiety, stick with it and track your symptoms.

    With proper posture and low impact exercise, the sedentary perspective should evaporate. I think of the most immediacy would be your anxiety. Anxiety is a major MS mimicry. Anxiety and Vitamin D deficiency are two major mimicries of MS. Both can be treated successfully. Both will also require a lifetime or at least a long term period to supplement.

    As to the MS hug, my last round with the Hug was last year. It was with me for 3 full days. These kind of symptoms can also feed into any anxiety you might have. The cycle can feed itself. A symptom journal might also help you identify anxiety triggers in your daily life.

    Whether anxiety or sedentary or both, exercise can and does help. As you exercise your brain produces natural chemicals which promote relaxation and healing.
    __________________
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    MS onset circa 1977
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    Eternally blessed and eternally optimistic!<><

     
    Old 07-11-2015, 02:12 PM   #6
    Vasoka
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    Re: MS symptoms, don't know what to do

    Thanks for the answer again, I was wondering does my experience sound like the MS hug? It's ALWAYS around the waist, exactly around the waist like a band - and sometimes it makes my abdominal muscles tight as well, but i feel as if this is mainly secondary to the actual waist problem. Could this be from sitting too much and waist problems? Thanks again.

     
    Old 07-11-2015, 02:17 PM   #7
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    Re: MS symptoms, don't know what to do

    Oh, also - does such type of flickering vsion in both eyes occur with MS? I never found an answer to that, everything points towards flickering only if you have had optic neuritis, but I haven't. Thanks again.

     
    Old 07-11-2015, 02:23 PM   #8
    Vasoka
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    Re: MS symptoms, don't know what to do

    And, sorry to post a third post in a row, but to sum it up - in your personal opinion.. seeing as you've clearly seen more cases and know a lot more than me, does my case sound like MS or it is a combination of the other things I listed? Thanks.

     
    Old 07-11-2015, 02:58 PM   #9
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    Re: MS symptoms, don't know what to do

    Hi there. You wrote "Thanks for the answer, my MRI were read by a radiologist and several neurologists." I have to point out that if severeal neurologists have read this and no one is coming up with anything MS related, you are not going to get a MS dx, you have to have lesions on the MRI to get the dx. Read up on the Revised McDonald Criteria to learn more about what is required to get the dx.

    No, the MS hug is not around the waist. Its around the chest. The best way to describe it, is if you had on a bra, right where the bra would hug you is the feeling. it doesnt affect your ab muscles at all, it feels more like a heart attack.

    MS in the eyes, nope, not that one either. The only effect MS can have on the eyes, and this is only about 25% of MSers (me included) is something called optical neuritis, which is inflammation of the optical nerve. This is painful, affects movement of the eye- and can affect color blindness. It lasts weeks if you dont have any treatment and its painful enough that you wouldnt be able to stare at a computer for hours. The pain would have you going to the eye doctor, who would refer you to a Neuro-Opthamologist. I dont think what you are describing sounds at all MS like. It sounds like eye strain...you might want to talk to an opthamologist about getting glasses that take some of the strain of the computer off your eyes.

    The rest of your complaints, honestly, to me sound like a pinched nerve. None of what you are describing is MS pain because it would be continually getting worse, would not be going away.....a pinched nerve however, possibly from weight lifting, possibly from being sendentary, would come and go. WHen you aggravate it, it can be really painful.

    Im sorry to be disagreeing with you, but having had MS for over 11 years now, and having been on these boards for over 10, Ive seen more people NOT have MS than actually have it. MS presents like 400 other diseases, that means your odds of having MS are only 1:400. I think you should look into nerve damage, as in pinched nerves- or consider the anxiety as the culprit. Are you addressing that? Anxiety is a very real disease.

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    Old 07-11-2015, 04:13 PM   #10
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    Re: MS symptoms, don't know what to do

    Vasoka,

    The posture of back support could be connected to your back issues. Exercise and stretching can help this.

    The flickering/refresh rate of the monitor can cause problems for some. The digital screens are less of an issue than the cathode ray monitors. You can purchase a pair of glasses specifically for electronic monitors.

    Unless you meet the Revised McDonald Criteria, you cannot get an MS diagnosis. At this point in your life journey, I would make sure you have no vitamin or mineral deficiencies, address your issues with anxiety, and develop an exercise habit to address any possible causes rooted in your prolonged sitting. In the last part, an occupational or rehabilitation specialist might be able to review your posture and offer remedies. When I had a lot of road trips I developed back problems connected to the car in the motor pool. My doctor wrote a note to my employer telling them that I should not use this model because the seat offered no support for me.

    If you address the three aforementioned things, and you get no relief, then you have more objective data to take to the doctors for further evaluations.
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    Eternally blessed and eternally optimistic!<><

     
    Old 07-12-2015, 02:04 AM   #11
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    Re: MS symptoms, don't know what to do

    Thank you for your replies, friends - you've helped me out tremendeously, I'll see about moving more and treating the anxiety - hopefully that helps. I wish you both a lot of health and for your MS to not get worse.

     
    Old 07-12-2015, 06:39 AM   #12
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    Re: MS symptoms, don't know what to do

    Vasoka,

    No worries. I certainly hope things improve for you. After a few months of treatment and browsing your symptom journal and you find the problems lingering without improvement, you will be in a better position for further inquiries with the doctors. Meanwhile, if needed, we are here.

    There are also other threads on this web site which cover anxiety. I would encourage you to look there too because you might find someone whose symptoms mirror yours
    __________________
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    Eternally blessed and eternally optimistic!<><

     
    Old 07-12-2015, 07:26 AM   #13
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    Re: MS symptoms, don't know what to do

    Just one more question if you don't mind, how does MS heat sensitivity present? Would it be like with me, just giving me a tighter squeeze feeling, or will I feel really miserable with many more problems? Thanks again for replying.

     
    Old 07-12-2015, 07:29 AM   #14
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    Re: MS symptoms, don't know what to do

    That's mainly what worries me lately, because I don't know of any other condition that would cause such heat sensitivity.. if it's even that.

     
    Old 07-12-2015, 09:54 AM   #15
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    Re: MS symptoms, don't know what to do

    Vasoka,

    No worries,

    MS heat intolerance FOR ME presents as a feeling of heat/fever without relief. As it builds, I lose energy and I might start perspiring uncontrollably. At the slightest indication, I get out of the heat. If my internal temp rises too fast, it often does not lower for a period of time which further weakens me and saps my energy. Personally, my MS Hugs have never been linked with heat issues. Each MSer with heat intolerance may or may not have different problems. I have shared what I experience. I do not allow the heat intolerance to get out of control and I intervene ASAP.

    As to other possible causes, below is a list of 25 additional potential heat intolerance causes. The list is alphabetical order and I know little about the illnesses. You might look into the heat intolerance issues with this list to guide you. Thyroid, I think, would rank high but can be tested and eliminated quickly. I would also offer the experience of my roommate in college who was from Alaska. He was heat intolerant when the temperature was over 75 F (23.8 C). I have friends in Asia who develop problems when the temperatures are below 75 F (23.8 C). These friends are healthy, but they cannot live well outside of their “environment”!

    Andrade's syndrome

    Anterior pituitary hyperhormonotrophic syndrome

    Athabaskan severe combined immunodeficiency B

    Bradbury-Eggleston syndrome

    Ectodermal dysplasia anhidrotic

    Ectodermal dysplasia, anhidrotic with T-cell immunodeficiency, autosomal dominant

    Lamellar ichthyosis
    Lamellar ichthyosis, autosomal dominant form
    Lamellar ichthyosis, type 1
    Lamellar ichthyosis, type 2
    Lamellar ichthyosis, type 3
    Lamellar ichthyosis, type 5

    Navajo neurohepatopathy

    OLEDAID

    Pituitary Cancer
    Pretibial Myxedema

    Renon-Delille syndrome
    Resistance to thyroid stimulating hormone

    Southwestern Athabaskan genetic diseases

    Troell-Junet syndrome

    Wilson’s Syndrome (either heat, cold, or both intolerance's)

    Lastly, if you are taking certain medications, there are some which can also cause heat intolerance.
    __________________
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