No one knows what's wrong with me.
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No one knows what's wrong with me.
Re: No one knows what's wrong with me.
You may have a dysfunctional immune system, causing all kinds of issues. Is your vitamin D intake adequate? Many are now recommending 5,000-10,000 IUs a day. Research the Dr Coimbra protocol.
Constant anxiety can cause all kinds of weird things to happen with your body. meditation or other forms of stress relief can be helpful. Stress also taxes your immune system.
Seek out a functional medicine doctor - these practitioners can delve deeply into what's causing your issues. They don't just treat symptoms.
Re: No one knows what's wrong with me.
i agree re nourishment for the immune system but will caution strongly re the so-called coimbra protocol, its myriad flaws including negligible if any peer-reviewed science, and anecdotal evidence of slapdash practise resulting in aggravated symptoms.
(related: section 2.4.1 in https://www.mdpi.com/2072-6643/12/3/783/htm )
clinical care in medicine has its own set of well known flaws where nourishment is concerned. as a starting point please evaluate how your own self care aligns with or diverges from public health messaging. consider asking your health management team for referrals to bona fide self care professionals such as a registered dietitian. consider investigating whether any doctors in your area are participating in initiatives like https://www.parkrx.org/
best of luck with your process - we are here to answer any other questions you might have

take control of your own health.
pursue optimal self care, with or without a diagnosis.
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Re: No one knows what's wrong with me.
Re: No one knows what's wrong with me.
sounds like you have some great info.
q re vit d. can you quantify normal? was the older low result in say, 30s range, is it now approaching optimal ie the 50-60 ng/ml ballpark?
i have to run and take care of something but i will be back soon to respond to your other points

take control of your own health.
pursue optimal self care, with or without a diagnosis.
Re: No one knows what's wrong with me.
take control of your own health.
pursue optimal self care, with or without a diagnosis.
Re: No one knows what's wrong with me.
So you haven't had an MRI for about 8 years. Is that correct? How long is it since you have seen a neurologist?
I would ask to see a new neurologist and mention all those symptoms, particularly the tremors when you try to feed your dog (that's called an intention tremor).
A lumbar MRI is a waste of time if you are looking for MS. It should be of the brain and spinal cord. That's much higher up.
Based on what you have said, an MRI should be looking at your brain stem, not your lumbar region.
As you have a family history of sclerodema, I would suggest you also ask to see a rheumatologist.
Regards,
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Re: No one knows what's wrong with me.
Re: No one knows what's wrong with me.
I do think you have a very legitimate complaint. If your GP doesn't help you get to a neurologist and/or a rheumatologist then you have to ask yourself if you are dealing with the right person. A nice personality can be a seductive trap. You need to see specialists.
Do get another MRI. It should be of your head and cervical spine. The lumbar would only show an impingement. I doubt that is where they should be looking.
You have put up with this for too long. Start with a new neurologist.
Regards,
Re: No one knows what's wrong with me.
ok so re 12/29
ferritin serum 235 mg/dl. Vitamin D was 38.6 mg/dl, magnesium 2.2 mg/dl, vitamin b12 1045 pg/ml.
you could consider using zinc to help manage that ferritin issue, but don't go overboard - too much zinc for too long can cause problems. even in the short term, too much zn taken at once can trigger some nausea (in that case a bite of food helps, but can also interfere w absorption).
zinc can help keep your d3 level in the upper normal range - you probably have room to add some zinc without pushing D3 too high. (depending on your regimen).
your mag could probably stand to go quite a bit higher too; it may help bring the glucose in line and may have links to the myofascial pain issue as well.
i am curious about your magnesium and d3 supplement chemical forms, doses, and timing. interactions between these two are worth considering as possible contributing factors.
b12 is well above ie 2-3 x higher than it probably needs to be. i don't have relevant research at my fingertips but would like to caution against pushing just one fraction of the b complex without the rest - we know that b12 does not occur in isolation in nature.
i hope you will share more about your mag and d3 regimen, and whether you would consider adding a quality multivit/min to the picture. i always think it's worth ruling out any potential nutritional considerations that might be flying under the radar just because results are statistically 'normal'

take control of your own health.
pursue optimal self care, with or without a diagnosis.
Re: No one knows what's wrong with me.
For more information, the spinal chord does not extend down to the level of the lumbar vertebrae. It stops at the lowest thoracic vertebrae, Th12.
https://en.wikipedia.org/wiki/Spinal_cord
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Re: No one knows what's wrong with me.
Re: No one knows what's wrong with me.
An eight year old MRI isn't a strong argument to deny an MRI being used now. If a picture was all that was required then any half trained technician could provide a diagnosis. MS is a disease where a trained neurologist uses an MRI to confirm there evidence of demyelination that backs up a diagnosis based on symptoms. It's not the other way round.
If someone uses that old picture as a reason not to take you seriously then treat that as evidence that you are talking to the wrong people.
Many people with a confirmed MS diagnosis and no change in symptoms still have a fresh MRI done every year or two. That lets the neurologist see if there are changes occurring that he can't detect. Relying on an eight year old MRI is like using 100 year old information- it's useless.
It's very pleasing to see you are getting on the front foot with this. It doesn't matter what your problem is, you need to drive the investigation.
I'm sure we can come up with names for a lot of issues but lets not put the cart before the horse. Getting back to a neurologist and following a proper testing process should come first.
Regards,
Re: No one knows what's wrong with me.
greatJimmy, I will get that other vitamin info you asked for

in the past, TiMS members have managed to reduce signs and/or symptoms with some pretty simple regimen tweaks.magnesium and d3 supplement chemical forms, doses, and timing.
i'm amongst the luckier of the members who've learnt the hard way that it just doesn't pay to ignore nutrition or to do supplementing wrong, even with the best of intentions.
at the very least, keeping accidental supplement interactions (if any) out of the picture, will help give your local pro team the clearest sense of what is going on!
take control of your own health.
pursue optimal self care, with or without a diagnosis.
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Re: No one knows what's wrong with me.
ok, on to the Vitamin D3. It's NOW brand. Vit C: 3 mg. Vitamin D3 & K2. 1000IU/45 mcg. Says it supports bone health and cardiovascular support. I've been taking it for several years and have not had a low vitamin d blood work since then. I just take 1 pill a day.
I've only been taking the magnesium for about 2 1/2 weeks. Spring Valley brand: calcium, magnesium & zinc + vit d3 bone & muscle health. Serving size: 3 pills a day. Per serving: D3: 15 mcg, 600 iu. Calcium: 1000 mcg. magnesium: 400 mg. zinc: 15 mg.
Haven't heard anything about if my insurance has approved the MRI yet, but it's only been a few days. If they deny, my dr will send me to a new neurologist and maybe get the LP. My dr also said she would schedule me for all new blood work when I felt better, so maybe we can get somewhere this time.
I guess I should mention this and it's embarrassing, but I am an alcoholic. I had all these symptoms before I started drinking so bad so don't think that has much to do with it although I'm sure it doesn't help anything. I also drink tons of diet dr pepper and don't eat right. I won't eat anything green (I know I am weird). I am pretty much a meat and taters kind of gal. I just felt if people are kind enough to try to help and support me that I should be honest. Haven't drank much this week because I've slept most of the dang week, but guess that's a good thing.
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