No one knows what's wrong with me.

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katybarthedoor
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No one knows what's wrong with me.

Post by katybarthedoor » Sun Aug 16, 2020 5:31 am

Hi, all. Newbie here. About 8 years ago I was shaving my legs and noticed numbness on my right ankle. It was scary and I went to the dr., but don't remember what was said. Eventually, the numbness spread up my leg, then the numbness moved to the left leg and eventually both arms. I get very tired when I walk even small distances, but was not very active before this started either. I've been called a hypochondriac and I am sure my dr. thinks so too, but she has sent me to every dr. under the sun and no one can tell me what is wrong with me. When this started I remember having vertigo, but chalked it up to menopause (i was about 45 at the time, 53 now). I was also having hot flashes so that makes sense. I have recently been a little dizzy, but usually only when I am in bed at night or if I bend over to pick something up. I had an MRI back then and it must not have shown anything (because my dr. did suspect MS). About 2 1/2 years ago I started having chronic back pain and it took an act of congress to get insurance to pay for a lumbar MRI (I had changed jobs and had different insurance). Things showed up on the MRI, but nothing in the area that my pain was coming from. I started off with a neurologist, many dr's in between and back to the neurologist and nobody can tell me what's wrong. They keep it so cold at my job that I have to bring furry house shoes, wear a sweater and put a blanket in my lap and my feet are still like ice. I had a grandmother that had scleroderma/raynauds, so from what I've been reading, thought maybe it could be MS with raynauds being secondary. The only time I can recall having any eye problems was years ago and it was kinda painful when I moved my eyes sharply in either way and thought it was weird, but never went to the dr. with it. The heels of my feet burn and no matter what kind of shoes I buy almost nothing is comfortable. I have to wear flat or low shoes because of the numbness, I am afraid I will fall. Sometimes when I bend over I have this horrible ripping pain around my right side ribcage that feels like someone is trying to pull my insides out which my mom said is probably a hernia, but I asked the dr. about it once and she said it wasn't in the right spot for it. I've been telling my dr. for years that my bladder doesn't empty out and I have to keep pushing and waiting for more urine to build up before I leave the bathroom because I can tell I'm not done. Recently, right after going to the bathroom, I was washing dishes and peed myself. I also have been having UTI's pretty often. I have tremors in my left hand, but I've only noticed this when I go to give my dog a little piece of food and I'm holding it with my pointer finger and thumb and I usually drop it because it's shaking. I have severe depression (which I've always had), but also have severe anxiety and chronic insomnia. I have horrible gerd and noticed a change in my voice and eventually was having difficulty swallowing, but the dr. prescribed a new medication and it helped with the swallowing. I recently have what looks to be psoriasis or dermatitis around my hairline and above my nose. Very itchy and I usually end up with scabs because of me picking at it. I have no idea if any of these things are related, but there's just too many things to ignore. I'm sure there's things I haven't even listed here. I've been told I had fibromyalgia & myofascial pain syndrome, but I just think it's something more, but I'm sick of going to dr's, spending a lot of money and never really getting anywhere. MRI's, bloodwork, nerve tests, stress test, many dr's and no solid diagnosis which means they can't treat me. Sorry for this very long post, but I am beyond frustrated at this point and don't know what else to do. Any advice?

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

Post by tzootsi » Sun Aug 16, 2020 6:18 am

I am not a doctor, but here are a few suggestions -
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.

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

Post by jimmylegs » Sun Aug 16, 2020 6:50 am

welcome! sorry to hear about the frustrating times you've been having.

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 :D
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

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

Post by katybarthedoor » Sun Aug 16, 2020 8:20 am

Thank you for the replies. Last bloodwork 4 months ago my Vitamin D was normal. About 3 years ago it was low and since then I take a supplement. I take a monthly b12 shot & magnesium. I forgot to mention earlier that I also have the most painful cramps in my feet, toes and legs sometimes. It mostly happens when I am in bed, but is so painful I can't even get out of bed to try to work the cramps out. I also am fatigued all the time.

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

Post by jimmylegs » Sun Aug 16, 2020 1:06 pm

hi again

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

Post by jimmylegs » Sun Aug 16, 2020 1:23 pm

hi again do you have a most recent b12 result? may i inquire re your magnesium details? i have some suspicions re the cramping - could be a number of things. ugh buzzer going back soon.
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Scott1
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Re: No one knows what's wrong with me.

Post by Scott1 » Sun Aug 16, 2020 4:32 pm

Hi,
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,

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

Post by katybarthedoor » Mon Aug 17, 2020 3:41 pm

Was feeling like crap last night and went to bed early, so just now seeing the additional replies. My last blood work was on 3/30/20 and the only thing high was glucose 110/mg dl and creatinine 1.03 mg dl. This was follow-up blood work because some things were high from blood work done on 12/27/19 which was: glucose 129 mg/dl , creatinine 1.02 mg/dl , ferritin serum 235 mg/dl. Vitamin D was 38.6 mg/dl, magnesium 2.2 mg/dl, vitamin b12 1045 pg/ml. 3 years ago when the vit d was low it was 27.9 mg/dl. I just started taking magnesium because a dr told my mom that it was good for migraines which I also have. The MRI of my head was 8 years ago. The one I had of my lumbar was to try to figure out what was causing the severe back pain. I last saw a neurologist about 2 years ago (different one than the one 8 years ago) and he basically did nothing for me. Rheumatologist (also about 8 years ago) said it was myofascial pain syndrome. She was aware of my family history of scleroderma/raynauds and was quick to rule on fibromyalgia which I was told before I had. I had given up on tying to figure out what it was after the last appt. turned up nothing after being bounced from one dr to another with no answers or help, but recently started researching again. I think I will make another dr's appt. and get referred to a different neurologist and see if maybe I can get another MRI. My insurance makes you jump through hoops before they will agree to do one, so it may not be a possibility.

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

Post by Scott1 » Mon Aug 17, 2020 4:34 pm

Hi,
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,

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

Post by jimmylegs » Mon Aug 17, 2020 4:45 pm

ack sry you had a bad night. more great info!

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

Post by NHE » Mon Aug 17, 2020 5:01 pm

Scott1 wrote:
Mon Aug 17, 2020 4:34 pm
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.
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

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

Post by katybarthedoor » Fri Aug 21, 2020 6:41 am

Hi, all. I was a couple days late taking my b12 shot and I sure paid the consequences for it. I was very fatigued and just wanted to sleep. Thought I would die at work, I was so tired. Finally did a tele-med appt. with my dr. and she is going to try to get me an MRI. If the insurance denies it, she will refer me to a different neurologist that I haven't been to before and maybe get the LP. I know they already ruled out MS 8 years ago, but if they do another MRI and the LP and it's still negative, then maybe I can move on from it. I know MS can mimic a lot of other things, but one would think they would be able to narrow it down and find something so that I can be treated. 8 years is way too long especially with so many on-going issues that have never been diagnosed. Jimmy, I will get that other vitamin info you asked for, but my meds are at home and I'm at work. Most of the stuff I take is from Amazon or Wal-mart, so nothing fancy and I am a tightwad, so nothing expensive either. I think I forgot to mention in my previous post that I also have hypnic jerks and they are BAD. The insomnia is horrible, but if I am able to get to sleep, I usually sleep through the night and even if I get up to go to the bathroom, I am still able to get back to sleep usually. That is, unless I have the hypnic jerk. Sometimes it feels like I've been shocked by electricity and I will jump up out of the bed thinking I am dying. If things aren't bad enough, there's always something new that comes in the mix. If only it had a name...… (other than the bad ones I call it when I am alone lol).

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

Post by Scott1 » Fri Aug 21, 2020 4:05 pm

Hi,
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,

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

Post by jimmylegs » Sat Aug 22, 2020 6:33 am

Jimmy, I will get that other vitamin info you asked for
great :) i will watch for details re your
magnesium and d3 supplement chemical forms, doses, and timing.
in the past, TiMS members have managed to reduce signs and/or symptoms with some pretty simple regimen tweaks.

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

Post by katybarthedoor » Sat Aug 22, 2020 11:29 am

Hi, again. Thank you so much for the info and support. It means a lot to me. I was fatigued and super sleepy all last weekend and assumed it was from taking my b12 shot a couple of days late. This has happened before and I always have that same reaction, so really believed that's what was wrong. By Wednesday, I had to call in to work and called my dr's office. They wanted to send me for a covid test, but I convinced them that because of the late b12 shot and the fact that I always have headaches (ongoing for around 30 years) and diarrhea (since I had my gallbladder out Dec 2018), that I didn't think the covid test was necessary and didn't want it to affect my job. My dr scheduled me for the telemed call and I told her everything that was going on. She told me to call their office the next day and let them know how I was feeling. That night trying to get to sleep, I had a horrible hypnic jerk that was so scary, I never got back to sleep and felt like crap, but knew I had to go to work. I called the dr's office and left a message that I had had a bad night and didn't sleep, but because I was so freaked out, I wasn't sure if the fatigue was any better. Thursday night slept pretty soundly and went to work Friday, but continued to be sleepy/fatigued all day. I went to bed last night before 7pm and slept until after 1pm today. I NEVER sleep that late on a Saturday (unless severely depressed). I always get diarrhea right after I eat and I've been 3 times today since I ate when I got up 3 hours ago. I am usually extremely OCD about cleaning my house and getting stuff done on the weekends, but don't really feel like doing anything. None of this has to do with MS, but just wondering if anyone has had covid that has these symptoms. I rarely go into stores and always wear a mask and use hand sanitizer before and after going in a store. We take turns at work sterilizing the office at the end of every work day and I am in an office by myself, so rarely around many people, so just don't see how I could have it, but hard to explain this exhaustion/sleepiness and the b12 shot should have kicked in days ago especially since I also take a sublingual form of it daily and never missed a dose of that.

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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