I really need some help

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

I really need some help

Postby Julian1776 » Mon Oct 08, 2018 1:23 am

Well, I’m 23 years old if I can remember correctly about 3 years ago I noticed shakiness in my fingers sort of like if I stretched them they’d move. I because very panicked since I know my grandma had Parkinson’s. I noticed twitches in my body as well as one side of my body felt weak compared to the other. When I would put pressure on my left leg it would shake or tremble but my right one wouldn’t I also noticed my teeth chattering if I put them together. Now I was almost certain it was Parkinson’s or ALS but I never game MS a look until maybe a year ago and noticed symptoms that resembled mine. I notice when I look at my hair it looks so shaky and when I slowly turn my foot left and right it trembles I know there’s a word for it but i can’t remember. It’s like that when I bend my back and slowly straighten it out as well, also does that in other parts of my body. I’ve done strength tests and reflex test but my doctor thinks it’s my anxiety since I was also diagnosed with Generalized Anxiety Disorder so for the past three years of my life I’ve felt helpless. She also says it could be BFS but like the fool I am, I looked up other symptoms. I can’t stay off the internet and I’m slowly giving up hope since I feel like I can’t see a neurologist cause my doctor doesn’t think I’m in need of it. I’m scared but also trying my best to keep my head up. I can still play guitar and walk around for long periods of time but no matter what I’m alsways thinking about what’s wrong with me. I know nobody can diagnose me but I also know this is for people who understand MS. I don’t have really anywhere to turn to so I hope I don’t come off as a jerk but I am scared. When I bend my neck down it trembles and honestly I don’t remember it doing that before. I would like some guidance and I can also tell more symptoms if anyone needs more info. Also I get a lot of spasms inside my muscles
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Re: I really need some help

Postby jimmylegs » Mon Oct 08, 2018 3:41 am

hi and welcome :)
i'm curious - have you ever been given, or asked for, a referral to a proactive, preventive health care professional of any kind?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: I really need some help

Postby ElliotB » Mon Oct 08, 2018 3:51 am

Sorry to hear you are ill.

"I can’t see a neurologist cause my doctor doesn’t think I’m in need of it"

Based on your doctor's current thoughts, what has he/she proposed as treatment? Why do you think he/she is incorrect?

If you are not satisfied with him/her, find another primary care doctor that is willing to work better with you that you are more comfortable with.

Also, at this time, a second opinion is probably a good idea anyway, and you may find a doctor you like better.

In the meantime, there is a lot you can do for yourself. Be as healthy as you can be, follow a good diet (there are so many to choose from, pick one that makes sense to you), exercise a lot and regularly (doesn't have to be strenuous, even basic walking is fine), take nutritional supplements that make sense to you, and eliminate all stress from your life.

Good luck and hope you are feeling better soon.

FWIW, there are about 400 illnesses that mimic the symptoms of MS. Something is obviously not right. Whether you have MS or something else needs to be determined and a diagnosis from a doctor is needed at this time.

ALSO, have you had basic blood work done to rule out simple deficiencies?
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Re: I really need some help

Postby Julian1776 » Mon Oct 08, 2018 8:31 am

Thank you for the replies. They mean so much. Well the only thing about deficiencies I know of is Vitamin D deficiency. I was super low but after more blood work they said I was good and it was up to par. I really need a new one so I’m looking into it right now. I also skipped out on some detaiils that I don’t think are needed. I don’t know really how to handle all of this but I willl keep you updated.
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Re: I really need some help

Postby Julian1776 » Mon Oct 08, 2018 8:34 am

Also if im not mistaken I’ve never been referred to anyone actually. All that is told is that it’s most likely my anxiety. My vision also was getting bad when it all happened but my family has bad eye sight. The eye doctors told me she didn’t notice much.
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Re: I really need some help

Postby jimmylegs » Mon Oct 08, 2018 8:59 am

it's important to know the fine details of test results like d3. what the docs think is ok locally, likely applies to bone health. it's a different rubric for immune system health.
i don't suppose anyone ever tested serum magnesium?
presuming you supplemented d3 to restore levels, i wonder if the docs recommended any cofactors to go with your d3 regimen? supplemental d3 without cofactors would have the real potential to worsen anxiety.
sounds like it would be in your best interests to ask for a referral to a pro like a registered dietitian. a high quality diet provides building blocks a for healthy immune function, eyesight, mental health and more.
check out related posts in the mental health forum (look for it halfway down the 'life' section from the main index page).
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: I really need some help

Postby jimmylegs » Mon Oct 08, 2018 9:23 am

this related study gets on my nerves. different forms *and* doses please... i can't even believe this study was conceived of a) using something like mag sulfate *and* b) without having the 'after' test in place. we already know about this element of good study design - smh.

Effects of zinc and magnesium supplements on postpartum depression and anxiety: A randomized controlled clinical trial
https://www.tandfonline.com/doi/abs/10. ... 16.1235074

"In this triple-blind, randomized, controlled clinical trial, the participants were randomly assigned to the zinc sulfate, magnesium sulfate, and placebo groups (n = 33 per group). The intervention groups received a 27-mg zinc sulfate tablet or 320-mg magnesium sulfate tablet per day for 8 weeks, whereas the control group received a placebo tablet each day during the same period."
Conclusion
"Considering the results of the present study, which indicated that zinc and magnesium supplements 'cannot' (read: as used in this specific intervention *did* not) prevent postpartum depressive symptoms and anxiety in non-depressed women, it is recommended that the effects of these two supplements with different doses and with longer follow-ups should be evaluated in future studies. In addition, administration of these supplements should be accompanied by studying their serum levels before and after the intervention."
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: I really need some help

Postby Julian1776 » Sun Oct 21, 2018 1:30 pm

Sorry for the long wait on a reply. Thank you for letting me in more on how many things it could be. I was feeling relieved until I noticed numbness in the genitle area. It started back in March of 2016 but when I think about it more and more it makes me think it got worse. I should have put more detail on symptoms and what not. I have a doctors appointment soon and I’m gonna try to make it clear I want to start seeing someone who can try to make me understand what’s going on. I haven’t been able to live a healthy lifestyle since before this all happened. I’m nervous and scared but there’s not much I can do until I figure it out. I probably should mention that when I hold a smile I notice a little spasm in my lip or my face. Something I don’t remember happening when I was younger. Every doctor I’ve been to has told me it was anxiety. It’s always been anxiety but when it comes to facial spasms or the penile area being numb, I just can’t believe it’s anxiety or depression. I hope to have answers soon. I want to finally know what’s wrong with me.
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Re: I really need some help

Postby jimmylegs » Sun Oct 21, 2018 2:00 pm

hi and no worries. three questions:
1. do you have a copy of your older bloodwork results, specifically the vitamin d3 levels?
2. what exactly was the regimen to correct the deficiency? details here could provide clues to one or more of your symptoms.
3. i'm interested in your barrier(s) past and present to healthy lifestyle. can you elaborate?

doctors are not dietitians.

i had a boss who was having trouble with conception and her docs told her it was stress. i gave her some tips and she was preggo 6 weeks later, after trying and failing for 2 years before that. some time later she asked if anything i'd suggested would have helped her feel more calm. she'd always thought she just had a high strung personality. once she started paying attention to some essentials, her lifelong anxiety evaporated.

i had a similar experience - was working on a nutrient issue for completely different reasons, and the unexpected side benefit was that the lifelong chronic burn of anxiety in the pit of my stomach just... went away. it's nice that all that is in the rear view mirror for sure. might be a possibility for you too. and on that note, i'll look forward to reading your answers re the three questions above :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: I really need some help

Postby Julian1776 » Sun Oct 21, 2018 11:25 pm

Thank you again for the reply. But no sadly :/ she said my levels had been the lowest she’s ever seen. My health she mentioned has always been about my sleeping habits and eating habits. She said it can cause some symptoms but she had me on vitamin d and it was a super high dosage but I went back and she said it wasn’t a deficiency. But honestly I don’t know really what to believe anymore. I’m just scared at this point.
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Re: I really need some help

Postby jimmylegs » Mon Oct 22, 2018 4:22 am

ok to rephrase

1. get a copy of your older bloodwork results, specifically the vitamin d3 levels before and after supplementation, and relay.
2. type out and post the exact regimen used to correct the deficiency. details here could provide clues to one or more of your symptoms. note: super high dose is not the appropriate level of detail.
3. type out and post information about the main reasons for poor sleeping and eating habits.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
User avatar
jimmylegs
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Posts: 11759
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