Struggling with undiagnosed symptoms

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Struggling with undiagnosed symptoms

Postby SuzyS » Sat Aug 12, 2017 1:55 am

Hi all. I'm new to online communities and would like to share my experience with people who understand the difficulties and impact it has on ones life when you don't have a diagnosis for the troubling and at times debilitating symptoms. I'm a 34 yo women, a single mum with three children. My symptoms have been going on for years, particularly the last three years and even more so in 12 months. I don't know when exactly the symptoms I have now started but I know over years some of them have repeated and some are new. This has caused several misdiagnosis over the years. I've been told all my aren't typical of MS to me is the only condition that has similar symptoms and is what is currently being investigated it brought me to this page. I really don't know what onlinevcommunity I should go to. My symptoms are chronic fatigue - every morning for years I wake up exhausted with flu like symptoms. I have chronic pain - mainly back, legs, kneck, area between ribs but I also experience stiffness, cramping and pain mainly in my feet and hands. This is worse a.m and p.m and when I'm active, I try to stay as active as possible when I can and push myself. I have frequent dizzy spells with movement and had to stop exercise. I sometimes have vertigo and vomiting. I lose my balance and fall over often. My walking gait can feel disordered, mainly after 5-10 mins of walking and I feel and look a wee bit drunk. Both my legs can feel like lead, usually one is worse than the other. The visual issues I have affect both my eyes, usually one more than the other. I have bilateral 24/7 tinnitus for over three years, again one side is usually worse than the other. I also experience sensory overload and slight bladder and bowel issues. And brain fog every day, forgetfulness, unable to take in new information and understanding. I have been referred to mental health, ENT, ophthalmology and currently awaiting MRI brain and neck results which were done 2 weeks ago. If I get the all clear it will be good news, however I'm still struggling to manage daily with my symptoms. I'm at a cross road in my life also. I've been volunteering and training and my dream job has come up and I have a good chance. I'm trying to remain positive but I'm worried and struggling :(
SuzyS
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Re: Struggling with undiagnosed symptoms

Postby SuzyS » Sat Aug 12, 2017 2:37 am

I forgot to add the buzzing sensation I experience. I get quite a few different sensations in different parts of my body, as well as pins and needles. My symptoms have significantly progressed over the years, they have been life changing! I wake each morning feeling hopeful & positive and try my best to get on with my day but it's so hard and each day harder to get through the day. People are noticing my symptoms more and how ill I look. My GPs hasn't been that helpful though. For years I've been telling my GP's my physical symptoms are making me feel low at times and not the other way around but I was told it various things - it's psychosomatic, it's because you're a women, it's because you are a mum, a hypochondriac. For years I just tried to get on with it but physically I felt bad. I can't do alot of what I used to do and yes I have had depression and still my mood dips but it's because of my physical symptoms - I've been telling them for years. However I'm generally, believe it or not, quite happy - that to me isn't depression and if it was would it cause my symptoms? Probably not. Neurologist I saw before MRI referral stated "some symptoms appear neurological but unlikely MS and MRI should rule it out but there is the problem of incidental findings" I'll wait to see what the results show up. However it's been two weeks and no news yet means it can't be anything serious I'm thinking.
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Re: Struggling with undiagnosed symptoms

Postby jimmylegs » Sat Aug 12, 2017 3:50 am

hi have any docs referred you to a dietitian? do you have any results of nutritional bloodwork you can share? i'm curious to hear if your levels of various key nutrients are optimal (normal can be associated with treatable deficiency). the pursuit of optimal nutritional health requires equal attention to that devoted to pursuit of diagnosis. in fact if nutrition is not given sufficient attention, related symptoms may muddy the diagnostic picture. when symptoms are all in your head, it can mean the tests being run are not the right tests or if they are, they're being interpreted as if normal is optimal - which it often is not.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Struggling with undiagnosed symptoms

Postby SuzyS » Sat Aug 12, 2017 9:30 am

Thanks for replying. I have been tested several times - no dietary deficiency detected at those times. I get blood tests regularly.
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Re: Struggling with undiagnosed symptoms

Postby jimmylegs » Sat Aug 12, 2017 3:03 pm

'detected' is your operative word there, given that *'normal' can be associated with treatable deficiency*
many standard tests wait for a level to drop below a 'normal' level before a deficiency is flagged. it's a serious problem.
'normal' is stats normal. the bell curve. ms patient nutrients levels are low NORMAL. healthy controls mid to high NORMAL. if your lab's 'normal' range is derived from a population prone to chronic illness as a whole (a scenario that's increasing worldwide in developed and developing nations), you don't necessarily want to be associated with that 'normal' crowd.
i'm curious, what were your serum zinc and serum copper levels at last testing?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10382
Joined: Sat Mar 11, 2006 4:00 pm

Re: Struggling with undiagnosed symptoms

Postby SuzyS » Sat Aug 12, 2017 5:11 pm

I don't know my levels and even if I was told or i did question the results I have no idea what a good level is and what is considered normal. When I was told every thing was OK, I assumed it was.

You have given me something to consider.
SuzyS
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Re: Struggling with undiagnosed symptoms

Postby SuzyS » Sat Aug 12, 2017 5:12 pm

*and at what level of normal
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Re: Struggling with undiagnosed symptoms

Postby jimmylegs » Sat Aug 12, 2017 6:09 pm

if you have or can gain access to your existing files, even a list of tests, we can help you identify potential gaps in work done to date.
re any specific results you may eventually be able to share, we can help interpret the existing findings. many of us have been there, and are here to help :)

i'd like to mention that you can expect to have your fair share of nutrient deficit issues, having built three entire human beings with available nutrient resources - in addition to what your body needs for itself!

some related reading (earlier chats with another mom of three) general-discussion-f1/topic19575-15.html#p191527
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10382
Joined: Sat Mar 11, 2006 4:00 pm


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