No one knows what's wrong with me.

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Sat Sep 12, 2020 4:18 pm

hi again :) i'm circling back around to your post of aug 22 here, re
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.
i have already voiced some thoughts on that product in general, and i and wonder if you might consider a break from it, with a week or so using magnesium glycinate?
per the link posted earlier, there seem to be several options available to you locally. magnesium glycinate (oxide complexed with glycine) is better absorbed into tissue than magnesium oxide.

in the past, i recall one TiMS member successfully relieving magnesium deficit symptoms, by simply switching the daily dose from magnesium citrate to magnesium glycinate.

if you decide to pick up some magnesium glycinate, please consider taking one dose at the same time as your vit d3 (which could be increased to 2000 iu per day), and a second magnesium dose timed well away from any vit d3. d3 monopolizes magnesium if it gets the chance, and your body needs magnesium for a few hundred other things besides making vit d3 happy!! :D
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Sat Sep 12, 2020 8:00 pm

I did look at the link you sent, but haven't purchased any yet, but I will. I've had some unexpected expenses this month and dealing with all this new stuff going on is depressing. From what I've read, it takes years and years for some people to be diagnosed with MS and others never get a diagnosis, but have all the symptoms. I've done all the tests (except LP) with nothing showing up, so I guess all I can do is try to live with it and if that's what I have, maybe one day it will show up on the MRI. I've been doing some research on these new symptoms I have (bi-lateral partial hearing loss & TMJ) and it could be Meneire's disease which would explain the fatigue/sleepiness I've had for the past month along with the headaches, nausea and dizziness or it could be some other ear issue. My dr is referring me to an ENT specialist, so hopefully I can find out for sure because the past month I have missed so many days of work with no pay, not to mention feeling bad all the time. The whole ordeal has taken a toll on me and caused excessive worry and stress.

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Sat Sep 12, 2020 8:38 pm

Please go to a neurologist. Tell that specialist all the symptoms without trying to interpret them.
You should have only one question- "If it is not MS, what is it?" A good neurologist will have a battery of other ideas. A GP just doesn't have the skills.
I don't think you should say that you'll just have to live with it. That's unfair on yourself. You have far too many things going on. If your GP and her network can't help you, then find another.
Regards,

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Sun Sep 13, 2020 7:49 am

i hope you feel better soon, and are able to pull together the resources needed to obtain some magnesium soon too, while you wait for specialist appointments to roll around.

even stress of any kind, physical or emotional, contributes to magnesium depletion. magnesium is essential for the transport of ATP, ie your 'energy currency', throughout your body.

i hope you will also be able to plan/budget for zinc testing. it's one to be a bit more careful with, compared to magnesium. one testing option:

Zinc, Plasma or Serum Blood Test
https://www.lifeextension.com/lab-testi ... blood-test

potentially related:

Zinc in the treatment of idiopathic sudden sensorineural hearing loss
https://onlinelibrary.wiley.com/doi/abs ... lary.21291

Zinc Depletion in Alcoholic Liver Diseases
https://www.tandfonline.com/doi/abs/10. ... 8009181484
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Sun Sep 13, 2020 8:16 am

Thanks for the info. I will buy what you recommended. Usually my weekends are all housework, meal prep and getting things ready for the week ahead. I have done nothing this weekend which makes me feel guilty. It's just me and my dog here, but I like things clean and I am OCD, so it drives me nuts not being able to get things done that I want to do. I am just tired. Anyway, when I called my dr's office on Friday (after sending an e-mail and not hearing anything), they said they did get the e-mail, but was waiting for the dr to respond to it. I knew she left early on Fridays. They did call me back mid-afternoon and the nurse had notes from the doc basically stating that she was referring me to the ENT and for ultrasound of liver and that my MRI results were "just fine". I actually went to the radiology portal and the MRI report is available now. It did mostly did sound like there wasn't much to worry about, but it did say "nonspecific punctate subcortical leukomalacia" which can be seen with migraines (which I do have) or minimal small vessel changes. When I google this, it mainly mentions babies or children, but is is it anything to worry about?

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Sun Sep 13, 2020 9:01 am

you are welcome. i have to run out for a bit. in the meantime:

Alterations of Serum Zinc, Copper, Manganese, Iron, Calcium, and Magnesium Concentrations and the Complexity of Interelement Relations in Patients with Obsessive–Compulsive Disorder (2012)
https://link.springer.com/article/10.10 ... 012-9371-3

"...In [OCD] patients' serum, zinc, iron, and magnesium concentrations decreased significantly (p < 0.05) compared to the controls. Serum manganese and calcium concentrations were significantly higher (p < 0.05) in patients compared to the controls.

back again :)

"nonspecific punctate subcortical leukomalacia" doesn't raise any red flags for me, but that said i don't spend a lot of time on MRi reports interp.

also, possibly of interest:

Lower Serum Magnesium Concentrations are associated With Specific Heavy Drinking Markers, Pro-Inflammatory Response and Early-Stage Alcohol-associated Liver Injury (2020)
https://academic.oup.com/alcalc/article ... 64/5734241

"... A lower serum magnesium concentration was observed in AD patients with mild liver injury. Females of both groups had mean levels of magnesium in the deficient range. ... Females showed a significant association between low magnesium levels and the omega6:omega3 polyunsaturated fatty acids (PUFAs) ratio. ... Low serum magnesium levels are common in subjects with AUD and appear to be associated with the onset of liver injury."

Magnesium, serum Blood Test
https://www.lifeextension.com/lab-testi ... blood-test
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Sun Sep 13, 2020 3:21 pm

bet you didn't see this coming ;) :

The role of nutrients in the pathogenesis and treatment of migraine headaches: Review (2018)
https://www.sciencedirect.com/science/a ... 2218312058

"...supplementation with magnesium, carnitine, riboflavin, niacin, CoQ10, vitamin D, Vitamin B12 and alpha lipoic acid have prophylactic and therapeutic effects on migraine patients. ..."

within safe limits, of course :)
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Sun Sep 27, 2020 1:26 pm

Hi, all! Another interesting week. I had my ultrasound for my liver scheduled for this past Wednesday. I woke up about 45 minutes before the alarm to go to the bathroom and was freezing. Turned off the ceiling fans, but started having chills. Took my temperature and it was 100.8. The chills worsened to an uncontrollable shaking and temperature got up to over 102, so had to cancel my ultrasound. My dr's office told me to rest and they would schedule me for another covid test the next day. The fever and chills eventually went away after several hours. Since I was being scheduled for another covid test I also had to cancel my ENT appt. for Friday which was very upsetting because of the bi-lateral hearing loss, dizziness, fatigue, etc. I had waited a couple of weeks for that appt. and will now have to reschedule and wait another couple weeks. The covid test came back negative again. During the time I was off (without pay for another 3 days), i started having tingling pretty much all over. I also had a small amount of pain in my right ear and a place on my neck that hurt at the same time my ear would hurt. I think I figured out it was when the tower fan was blowing in the ear. I also had a swollen lymph node that was tender on the back of my neck and my scalp felt like someone had dragged me by my hair (which I read could be from a migraine which I had a bad one during the fever/chills). The lymph nodes, scalp soreness and ear pain appear to be gone now, but the tingling is so strong it feels like my legs could buckle under me at any moment. The last weird thing was when I was laying in bed and I took a deep breath and all of a sudden it felt like something was squeezing my whole mid-section. That has happened several times since yesterday. Since my covid test was normal, I have to go back to work tomorrow, but thinking I should go to my regular doctor because I don't think I can wait weeks longer for the ENT appt. to get some relief. I can't keep missing work or living like this. Any thoughts?

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Sun Sep 27, 2020 4:11 pm

Hi,
If you ran a fever, but it wasn't Covid, then isn't it right to ask what caused the fever? Did your doctor run any test for anything else?
What you have written so far gives me the overwhelming impression that your doctor is well off the pace. It's either that or you aren't telling your doctor enough information (which I doubt).
If your lymph nodes are swollen then you are fighting something. Did you raise this with the doctor?
You just seem to be going in circles. You need someone who knows what they're doing.
Regards,

katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Sun Sep 27, 2020 4:39 pm

When I first had the hearing loss, my doctor referred me to an ENT (I called and told the nurse what was going on, they spoke with the dr. then called me back and said they would refer me) so I haven't physically been in the office since that happened or any of the other stuff since then. I was kind of ticked off that she just passed me off to an ENT having to wait weeks for an appointment without even asking me to come in first. Now I've had to cancel that appt. and will more than likely have to wait another two weeks. It could just be an acute sinusitis infection, but I would think if it were that, I would have had more symptoms and pain. Hearing loss can become permanent or worse the longer you wait depending on the diagnosis, so I am worried. Yes, I pretty much tell my dr everything and always the truth. Weeks ago when she ran the bloodwork and I did the MRI, there was nothing that showed up except high cholesterol and high ferritin serum which is why she ordered the ultrasound. MRI was pretty normal. She ordered the MRI without contrast and only of the head, not neck/spine and that bothers me as well because it's a $250 co-pay and it wouldn't have cost any more to do it at the same time and could have shown something that the brain MRI didn't, but it's too late now. Maybe the ENT will suggest a new one. I am also going to ask for a new neurologist. Someone has got to give me some answers before I go completely mad.

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Sun Sep 27, 2020 5:02 pm

Hi,

Whether or not MS is involved, the question you need to ask is "is this person helping me?"
If the answer is no, then look elsewhere.
Blood tests don't mean much if they ask the wrong question. Neither do MRI's if they are not done properly.
Testing your cholesterol levels for hearing loss doesn't even make sense.
You might need to start with a fresh doctor looking at you. The alternative is to rock up to a hospital and sit in the ER till someone sees you. They will do blood tests. If you are still running a fever they will want to know why.
Regards,

katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Sun Sep 27, 2020 6:05 pm

So much has happened, I guess it's hard to keep track of what happened when. August 15th is when the fatigue/sleepiness started. I did a telemed appt. with my dr., but wasn't convinced it was covid, so I declined to test. That's when I told her I wanted to be re-evaluate the possibility of MS which is why she ordered the blood work and MRI. By the next week, the fatigue wasn't any better, so she sent me for a covid test which was negative. As soon as the covid test came back negative, I scheduled the bloodwork and MRI. I had the blood work done on a Friday and scheduled the MRI for the next Tuesday. The Sunday before my MRI is when I got the hearing loss/dizziness/nausea, etc. began. Then the bloodwork and MRI came back fine (except for high cholesterol and high ferritin serum). Basically, I haven't seen my dr to tell her any of this new stuff that's happened, but based on the bloodwork/MRI, I think she just thinks I am a hypochondriac and can only do so much. I mean, she has sent me to all kinds of dr's and ordered MRI's/Bloodwork several times a year, but no diagnosis and it's been 8 years since the numbness started in my legs then moved elsewhere. I mean if 2 MRI's of the head (1 included neck) a lumbar MRI, 2 neurologists, a rheumatologist and a few other dr's can't find anything wrong, then am I just crazy? I know what I feel is real, but no one can diagnose me. If they ruled out Lyme's and Lupus and all these other things that mimic MS, even if the MRI's don't show lesions, isn't it still possible? I read that 5% of people don't have lesions. I just don't know where to turn anymore.

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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Sun Sep 27, 2020 7:37 pm

Hi,
Your underlying issue doesn't have to be MS. A blood test for MS just does not exist. Only a neurologist can make an MS diagnosis based on a range of observations, a GP does not have the skills and shouldn't even try to.
What is factual is you started to feel fatigued, you have problems with hearing, you have problems with balance, you experience nausea, your lymph glands were enlarged and painful, you have had fevers and chills,experienced abnormal tingling and nerve pain, had unusual tightness in your midriff and pain in your ear and neck.
What is also factual is it is some time since you have actually seen a specialist. Meanwhile your doctor is checking your cholesterol levels (which sounds completely off the mark).
Is that a fair summary?
You do need to see someone whilst you are feeling unwell. You may have a chronic infection that erupts and abates or you may have another issue that is outside your doctors skill set.
I'd change doctors. Even if you think your doctor is ok, it sounds like you are in a loop that just repeats. You need to break out of that.
Regards,

katybarthedoor
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Re: No one knows what's wrong with me.

Post by katybarthedoor » Mon Sep 28, 2020 5:44 am

Everything you say is true. I think when she scheduled the bloodwork, she included the cholesterol because it's always high and she just threw that in there with all the other tests, not because of the symptoms I was having. I tried changing dr's once because she wouldn't prescribe pain medicine when I was having excruciating back pain (she thinks I am a pill junkie), but the person I tried to change was within the same network and they wouldn't accept me, so I had to stay with her so I could at least get a shot because the chiropractor wasn't helping. It's hard to change when she knows my history and she does order all the right tests and send me to the right dr's, but I am still not getting any resolutions. The dr wasn't available for today and I don't care for the ARNP much, but I was able to get an appt. with her for this afternoon. I am going to ask to be referred to a neurologist--not the same ones I have been to before. I also was able to re-schedule my ultrasound and ENT appt. for Thursday, so maybe I can at least get some relief in the next few days. I will keep you posted. Thanks so much for your help.

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jimmylegs
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Re: No one knows what's wrong with me.

Post by jimmylegs » Mon Sep 28, 2020 6:32 am

hi again :) glad to hear you have an improved timeline for the planned appointments

quick question - have you discontinued, or are you still using
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.
?
wouldn't be the first time someone was taking something they thought would help, which was instead contributing to health problems

in reference to past bloodwork being fine, i still note the omission of serum mag and serum zinc from the testing record and hope that info gap can be resolved at some point :)
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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