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Multiple Sclerosis Community
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Avatar universal

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.
11 Responses
667078 tn?1316000935
Are any of the neurologists still following you? How were your neurological exams, reflexes and such. Neurologists can find more from those than from a MRI. It would be really weird being male to have MS symptoms for years and not have any evidence such as lesions on a MRI. As far as heat sensitivity the way it works in MS is this. Heat makes the nervous system slow down. So it is not that heat bothers you more it is that when you are hot MS is more pronounced. For example some one will get in a pool and can't get out. Or your legs are weak going from a parking lot into a store when it is hot.

I would get my general doctor to do a neurological exam and explain it to me. If he finds something that might be MS he can refer you to a MS Specialist. All neurologists do not know about MS. If the MRIs were not done using MS protocal they might miss something.

I still think if you have had theses symptoms for four years some evidence of MS would show up by now especially with your age and gender.

Alex

Avatar universal
I had several neurologist exams, yes - they were all clean, reflexes and all - I haven't had a neuro exam the last 2 years, but when I -was- tested my exams were all normal. I was at neuro a week ago about the waist tightness and such, and seeing as this neuro is also a part chiropractor (second specialisation), he did some adjustments on my neck/back - claiming that I need to move more and that he is 100% sure it's not any illness related. Thanks for your answer.
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome,

From what i understand, you are saying that for almost 5 years you've been worrying that you have MS, your a computer guy so you've done a lot of googling of your symptoms and you keep coming back to MS....

Over these years, 'none' of your neurological tests, clinical assessments, MRI's etc have actually found anything 'abnormal' and even though numerous neurological opinions have been consistent, the symptoms you experience are NOT neurological and due to your anxiety and or sedentary life style and or postural behaviour..

You've convinced your self that what you experience is the same as MS, but all the medical evidence you've had since you were a teenager, has been consistently neurologically normal......if you don't have any neurological abnormalities, it's illogical for you to keep focusing on MS, and continuing to be anxious that what you experience is MS, when your truth is that you are neurologically perfectly normal.
      
I would respectfully suggest that the reason why you are still anxious and seeking MS related opinions, is because you can't get MS out of your anxious mind frame. It is quite possible your anxiety and behaviours are more of a health problem than you are currently accepting, but it is in your best interest to only focus on what you absolutely know to be true eg need to change your life style, postural behaviours, be proactive about your anxiety etc and stop worrying about having a medical condition that you've never had any suggestive or consistent evidence of.

Food for thought...........JJ
Avatar universal
Well, it has been the heat sensitivty that worries me mostly.. not the other things. My waist seems to get worse in heat as I already said.. but some people said that the MS hug occurs around the chest not the waist, so I'm not so sure anymore - but thanks for your answer.
1831849 tn?1383228392
Hi -

You have no evidence of any neurological condition. You have been seen by numerous neurologists, all of whom have declared you neurologically sound. All of your symptoms can be caused by or aggravated by your sedentary lifestyle. Yet you are convinced you have MS?

I would recommend that you spend the time you are currently devotinng to symptom research to engaging in some physical activity. It sounds to me like you are looking for something to blame, other than your sedentary lifestyle, for your current circumstance.

Kyle
987762 tn?1331027953
COMMUNITY LEADER
Hi there,

Your worry about the way heat effects you, will more likely still be to do with your anxiety about your health, and fuelled by all the googling about MS you've been doing....

You know Uhthoff's phenomenon (heat intolerance) is associated with MS, and you believe what you experience is the same as the MS HUG but when someone is dealing with health anxiety, they will often experience vaguely similar symptoms of the condition their anxiety has their mind hyper focused on.

What you experience in heat, will probably be to do with your mind being focused on you having MS and your knowledge of heat worsening the symptoms of MS. You expect heat to effect someone with MS, you probably unconsciously overlook any alternate explanation if it isn't MS, finding signs of MS is the only explanation your anxiety is looking for.....

IF your circulation (blood flow) is sluggish from your sedentary behaviours, the likely explanation for what you experience is actually normal, localised heat increases blood flow and oxygen, the heat opens up your vascular system and stimulates the skins sensors

Anxiety that is focused on health, will unconsciously create more out of normal sensations and experiences, and I truly believe IF anxiety is one of your issues, it is going to be in your best interest to speak to your doctor about it and focus on changing your tomorrows!

Cheers.........JJ  

  

Avatar universal
Well, from all I've gathered from several topics on MS forums and the like, my problem is most likely not MS, but anxiety mixed with sedentary lifestyle - I will try to see PT and go from there, maybe I can get some exercises to get my spine back in shape. Thank you all for your answers, wish you a lot of health!

Avatar universal
Hello, sorry to bother you again - but yesterday in the night i had a very weird case of a less than a minute sharp pain under my right ribcage and the back on the right side, more or less the entire right side of the torso.. it's the first time I got something like that, and it was very short. Does this sound like it can be connected to a MS hug of sorts? Thanks.
987762 tn?1331027953
COMMUNITY LEADER
Hi there,

Q: "less than a minute sharp pain under my right ribcage and the back on the right side, more or less the entire right side of the torso.....Does this sound like it can be connected to a MS hug of sorts?"

A: What you've described doesn't sound right for MS, it could be indigestion, a stitch, the way you moved.....one off things that last for 'seconds' aren't usually signs of a neurological condition like MS.

I realise it's going to be really hard for you to change the way you've been thinking for years, but please consider speaking to your doctor about your anxiety, there is a lot of treatment available that will help you take back control.

It's not going to happen over night but until you get the appropriate medical treatment, and learn how to distract your anxious thoughts, you will continue to be worried about a medical condition you don't have evidence of, whilst avoiding dealing with the one you do.....please speak to your doctor!

Cheers.......JJ
20898741 tn?1592361935
Did your MRI include your thoracic spine area? I was misdiagnosed by 3 doctors and a PA and ended up partially paralyzed due to a tumor in the T1-T2 area. Your symptoms sound a lot like what I had. Mayo says they get around 400 of these a year.
20898741 tn?1592361935
Did your MRI include your thoracic spine area? I was misdiagnosed by 3 doctors and a PA and ended up partially paralyzed due to a tumor in the T1-T2 area. Your symptoms sound a lot like what I had. Mayo says they get around 400 of these a year.
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