Does this sound like MS or not? (LONG Story)

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

NHE wrote: Mon Nov 14, 2022 2:39 pm
DudeFromPA wrote: Mon Nov 14, 2022 12:54 pm Very interesting. Thanks. I, unfortunately, have no other alternative to be on permanent Omeprazole but I didn't know that as a side effect or other alternatives.
Omeprazole can cause vitamin B12 deficiency. Have you had your B12 level checked? Note, a complete B12 test should also include folate, homocysteine and methylmalonic acid.

https://www.drugs.com/pro/omeprazole.html
My B12 was fine...well slightly on the lower end than higher

Vitamin B12 pg/mL
Normal: 232-1,245
Mine: 514
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

Hi again, nice to see that your B12 is good. i personally try to ensure at least 500 pg/ml.
please correct me if i am wrong but given your ppi rx, i imagine your serum magnesium has been tested?
as for ranitidine as alternative to omeprazole, i found this bit of info which may be helpful:
Side effects of ranitidine
https://pubmed.ncbi.nlm.nih.gov/2043287/
looks pretty manageable, and overall it looks like ranitidine might offer some some relief from the hyperhidrosis while still having the other beneficial effects you need.
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

spasm/charlie horse Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

hi again, i was thinking of a couple folks i'd met years back, who had happened to be on PPIs and just randomly broke their legs - both while simply walking. completely separate and unrelated incidents with only ppis and fracture in common other than both of them being middle-aged guys. at the time, i definitely wondered if mag depletion from the PPI use had been a factor in their injuries.
around here, the mag 'normal' range at the lab can go down as far as 1.7, I've heard of 1.5 being used for the lower end. meanwhile, in this study the group with the highest fracture risk had levels as high as 1.9.
Proton Pump Inhibitors and Fracture Risk: A Review of Current Evidence and Mechanisms Involved
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6540255/
"...A meta-analysis of nine studies with 115,455 patients by Cegla et al. demonstrated a risk of hypomagnesemia among patients using PPIs ... Since hypomagnesemia is not readily identifiable on regular blood testing, many patients might develop this condition unknowingly."
hopefully fractures aren't on the list of issues you have had - or may have - to deal with!
i went back to the beginning of your first post and am pleased to report that you could reasonably expect using magnesium to give you some relief from "severe leg muscle spasms/Charlie horses".
i'll save you the learning curve i faced years ago and recommend testing out magnesium glycinate. even though mag glycinate is the most readily absorbed, the more you take the more laxative it can be. you could test it at 100 - 200mg per day to see how your system reacts. from there, you could increase to as much as 400mg per day, but carefully.
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

SO...

Heard back from my neurologist today. I won't be seeing the MS specialist in person. He had a discussion with her over my test results and said she believes, basically entirely based on my oligoclonal bands, that I do not have MS. It's some other autoimmune issue going on.

They scheduled me for another brain and spinal MRI 6 months from now to check the brain lesions and if anything new developed.

He is going to do some chest x-rays to check for lung nodules in case of sarcoidosis.

Also referring me to a rheumatologist to see if that might be a possibility.

Ugh...so frustrating. So, for now, it looks like not MS. Thanks folks for your input. I really appreciate it.
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

sweating/spasm/charlie horse Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

frustrating indeed! i strongly encourage you to try magnesium for the charlie horse/spasm issue, plus a break from omeprazole for the sweating issue. all the best!
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
NHE
Volunteer Moderator
Posts: 5919
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Does this sound like MS or not? (LONG Story)

Post by NHE »

DudeFromPA wrote: Tue Nov 15, 2022 5:41 am My B12 was fine...well slightly on the lower end than higher

Vitamin B12 pg/mL
Normal: 232-1,245
Mine: 514
It’s ok to be at the higher end of the range. In the book ‘Could It Be B12, an Epidemic of Misdiagnoses,’ Sally Pacholok writes that the CNS can become deficient in B12 when the serum level falls below 500 pg/mL.

https://www.amazon.com/Could-Be-B12-Epi ... 1884995691
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: sweating/spasm/charlie horse Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

jimmylegs wrote: Wed Nov 16, 2022 4:35 pm frustrating indeed! i strongly encourage you to try magnesium for the charlie horse/spasm issue, plus a break from omeprazole for the sweating issue. all the best!
Unfortunately, I'd have to secure an immediate alternative. I cannot quit something like Omeprazole not even for a week. After my gall bladder removal, I have an unbelievable production of acid and bile dumpage into my stomach.

Even just a few days off and my stomach turns into a literal, hot boiling nightmare of acid and reflux/Gerd. To the point where you can smell my stomach from a foot away coming off me. I'll go to bed at night and wake up in the morning and my wife is gagging as the entire bedroom is just full of my stink.

This, in turn, sets off a vicious IBS chain reaction in my intestines where they become full of gas and severe bloating which has lead to the ER in the past. Just below passing kidney stone pain which I've already experienced that.

With the Omeprazole and regular, daily consumption of low FODMAP foods (in controlled portions), and an eye on low to no gluten, just in case, I can keep the VERY delicate balance that is my stomach.
Last edited by DudeFromPA on Thu Nov 17, 2022 2:23 am, edited 1 time in total.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

Ugg...this is all so frustrating. I feel like all of my symptoms are being dismissed and no one wants anything to do with me.

Sure, maybe it isn't MS then but what is it? They're sending me off to a rheumatologist now but there's just so many symptoms that don't make sense for rheumatoid arthritis.

Everything I have been experiencing matches exactly up with MS symptoms to perfection. But because I had matching oligoclonal bands instead of having seperate bands in CSF only....automatically not MS?

I don't WANT to have MS, but my concern is if it ISN'T MS, that my symptoms may be indicative of something that is much more severe and possibly much more fatal.

Even CNS Lupus would make sense but the neurologist is adamant I don't have lupus either.
User avatar
Scott1
Volunteer Moderator
Posts: 1651
Joined: Wed Oct 22, 2008 2:00 pm

Re: Does this sound like MS or not? (LONG Story)

Post by Scott1 »

Hi,
This is all getting a lot more complex. The normal practices of the medical profession dictate that they look for one thing at a time. A cholecystectomy produces its own set of post operative issues. e.g. . Possibly they are sending you to a rheumatologist to get you tested by an endocrinologist. That is a good idea.
Perhaps, you have more than one thing going on or, alternately, one issue is causing a range of symptoms that appear unrelated.
The FODMAP approach makes sense, given you lack a gall bladder. Perhaps you need a dietitian who understands problems related to gall bladder removal.
To sort out your problems, I think you need to separate what is likely to be caused by the lack of a gall bladder into one group and then try to get whatever is left dealt with as an unexplained issue. Don't lump everything together as possible MS. Doing that is the easiest way to get lost.
Regards,
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

ranitidine sub for omeprazole

Post by jimmylegs »

DudeFromPA wrote: Thu Nov 17, 2022 2:08 am ...I'd have to secure an immediate alternative. I cannot quit something like Omeprazole not even for a week.
i hear you! not suggesting you go med-free at all. ranitidine could be worth a try. might help you avoid both the unmedicated IBS nightmare and omeprazole's sweating side effect.
jimmylegs wrote: Tue Nov 15, 2022 9:02 am ... looks like ranitidine might get rid of the hyperhidrosis and keep the beneficial effects you need.
i'm also seeing reports that ranitidine doesn't affect magnesium status / body stiffness the way omeprazole can. looks like you could solve two issues with one med switch. i wonder what your docs would think of the ranitidine idea :)
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
DudeFromPA
Getting to Know You...
Posts: 18
Joined: Thu Nov 10, 2022 6:43 pm

Re: Does this sound like MS or not? (LONG Story)

Post by DudeFromPA »

Scott1 wrote: Thu Nov 17, 2022 4:03 am Hi,
This is all getting a lot more complex. The normal practices of the medical profession dictate that they look for one thing at a time. A cholecystectomy produces its own set of post operative issues. e.g. . Possibly they are sending you to a rheumatologist to get you tested by an endocrinologist. That is a good idea.
Perhaps, you have more than one thing going on or, alternately, one issue is causing a range of symptoms that appear unrelated.
The FODMAP approach makes sense, given you lack a gall bladder. Perhaps you need a dietitian who understands problems related to gall bladder removal.
To sort out your problems, I think you need to separate what is likely to be caused by the lack of a gall bladder into one group and then try to get whatever is left dealt with as an unexplained issue. Don't lump everything together as possible MS. Doing that is the easiest way to get lost.
Regards,
Oh, for sure. I'm keeping the whole gall bladder/IBS/Reflux issues seperate in my mind, for now, from whatever else may be going on with me.

When I'm talking symptoms, I'm talking about everything else I've been experiencing this year I haven't ever had before. My gall bladder removal was like 10 years ago. All these other symptoms are totally new like constant leg spasticity, tremors, pins and needles, stabbing pains in the toes, ear pains, etc
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

spasticity, pins and needles Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

The effect of magnesium oral therapy on spasticity in a patient with multiple sclerosis "... We found a significant improvement in the spasticity after only 1 week from the onset of the treatment ... an improvement in the range of motion and in the measures of angles at resting position in lower limbs. No side-effects were reported ..."
Magnesium. An update on physiological, clinical and analytical aspects "If severe Mg deficiency develops, paresthesia (pins and needles), muscular cramps ... often occur."
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

Post-cholecystectomy syndrome Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

Post-cholecystectomy syndrome and magnesium deficiency "... MD was confirmed by serum and erythrocytic low Mg levels... Supplemental therapy was provided with Tiomag (Mg gluconate and methionine)... for 6 weeks or more. In 50 patients, PCES symptomatology disappeared after this treatment."
easy answer without waiting on the docs: Magnesium, Serum Blood Test $22.43
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
jimmylegs
Volunteer Moderator
Posts: 12538
Joined: Sat Mar 11, 2006 3:00 pm

one a day Re: Does this sound like MS or not? (LONG Story)

Post by jimmylegs »

found these, 400mg/d would be a good daily amount - esp if you've been in decline for years and years. looks like giving it a try for a week would cost even less than a test, and just be good for you either way: https://www.burmanshealthshop.com/produ ... glycinate/
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
NHE
Volunteer Moderator
Posts: 5919
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Does this sound like MS or not? (LONG Story)

Post by NHE »

Here's the magnesium I take. The caplets are 100 mg each. I take 4/day, 2 in the morning with my vitamin D3 and 2 at night with my melatonin and GABA.

Doctor's Best Magnesium Glycinate
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Undiagnosed”