Beginning of DX journey....

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

Beginning of DX journey....

Postby clhbix » Thu Apr 27, 2017 9:42 am

I am in the early stages of waiting for a DX. My symptoms started about a year ago. I had tingling sensations from my rib cage to my foot - just on the left side. It lasted for maybe 10 mins. The exact same thing happened exactly one week later. I didn't have problems walking or talking or any other symptoms. I brushed this off. Then in Dec of last year, I had issues with swallowing. It gradually got worse to the point that I had trouble getting yogurt down. I was originally diagnosed with acid reflux/GERD issues because I had a tightness in my throat and the ENT said the back of my throat was bumpy due to acid reflux. I have had these issues before and was prescribed Protonix which helped right away. Not this time. A couple weeks went by with no relief and I was diagnosed with Thrush - my tongue was white. They assumed that the Thrush was in my throat because of the issues with swallowing. (I was given antifungals for 4 weeks.) I wasn't able to get in for an endoscopy until the end of January and of course, there were no signs of thrush. So I'll never know if I actually had it in my throat. It took about 3-4 weeks before swallowing was normal for me again.
Then in March - I was experiencing the tingling sensations more often. I have Hashimotos, (have had it for over 10 years) and found out that I was being over-medicated so I thought it was due to that. My PCP had my Vit D, Calcuim and B12 checked. Vit D was low - I think it was at 14 - so I'm taking a high dose of that for 8 weeks. B12 was at 330 - which is "normal." Since I was having tingling and numbness at this time, she sent me to a Neurologist. He recognized that my B12 was on the low end of "normal" and told me to take 500 mg of a b12 supplement. I've had MRIs of my brain, cervical spine and thoracic spine. My brain has white spots on it, but the Neuro (and my PCP) said that they see this on a lot of scans and that it doesn't mean anything. My thoracic spine was normal. My cervical showed inflammation. (The word "lesions" was never used for any of my MRIs....does this make a difference?) He says he is pretty sure it's not MS but hasn't ruled it out yet. He had my copper tested and I found out as of last week that that was normal as well. My iron (9) and ferratin (10) levels were slightly low so I'm taking an iron supplement, too.
Since taking the B12 and VitD supplements, my symptoms are fewer and further between. I feel better - my appetite is back....I don't feel massively depressed anymore....my anxiety is to a bare minimum....I rarely feel tingling and if I do it's not nearly as intense, it's barely noticeable....my brain is not in a fog. I still get numbness in my toes ...but it's random and doesn't last long.
But my questions are: what questions should I be asking my neurologist? Can inflammation on the cervical spine mean MS - even though the word "lesion" wasn't used? If it is a dx of vitamin deficiencies and not MS, how long does it take for the symptoms to go away?

Thank you in advance for your help and suggestions.
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Re: Beginning of DX journey....

Postby jimmylegs » Thu Apr 27, 2017 11:29 am

hi :) here is a series of posts you may find somewhat informative.

introductions-f20/topic28969.html

personally my own issues with swallowing were also linked to gerd and i was given nexium. i think i took one but was reading all the while and quickly rejected it due to the interference with nutrient absorption. when i was in for a chest xray due to all the related discomfort (it was clear) a pharmacist told me to work on magnesium, and he told me some info (but not all) on how to do a better job. esp in conjunction with the d3 i had already been working on for some time.
my throat issues cleared up in 2 days and stayed cleared up after diligent work over months and years to get tissue stores back into line.

i grew up with fungal issues and special diets and previously as an adult had taken antifungals as well. at my own insistence; my doc had said it was a secondary opportunistic infection but i was not ready to absorb that yet at the time. now, yes for sure. since i sorted out my body chemistry overgrowths of any kind have just not been a thing.

it's been a while since i looked at hashimoto's so would have to refresh my memory before adding any insights in that dept.

re b12 what units. 330 is still on the lower end of normal either way, but you want to be at least 500 pg/ml aka 370 pmol/l. existing range is based only on hematological measures.

re serum ferritin i like to stay between 80 and 100. in the posts linked above you'll find important info and caveats re supplementing iron alone.

you can and should fight inflammation regardless of context with and without a dx.

when nutrition is in the picture, reversibility depends to some extent on how long things have been brushed off and in some cases, whether or not nerve roots have been damaged vs outright killed through neglect. for me i had reversible damage for doing d3 and magnesium incorrectly.
at first work on magnesium took a couple days to take effect. later i could feel it kick in inside an hour or two. now, i don't feel it 'kick in' at all, because i'm topped up.

peripheral and central b12 damage was reversible for years, within hours or maybe a day. it's hard for me to remember with that one because we are talking a good 15 yrs ago now. ignoring that one ultimately led to permanent damage.

others should be able to chime in re questions for neuro. personally i'm not dx focused - msdx just happened to me quite suddenly, while i was trying to be healthy. (too bad i was so dumb about it back then). hope some of that helps :)
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: Beginning of DX journey....

Postby clhbix » Thu Apr 27, 2017 12:10 pm

Thanks for the link, Jimmylegs! I actually just asked my Neuro a couple days ago if I could get my Magnesium tested....he sent in a script but I haven't gone to get it done yet.
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Re: Beginning of DX journey....

Postby jimmylegs » Thu Apr 27, 2017 4:20 pm

ah nice one. did he write it for serum mag? or does it say RBC? or both?? lol
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: Beginning of DX journey....

Postby lyndacarol » Thu Apr 27, 2017 5:25 pm

clhbix wrote:I am in the early stages of waiting for a DX. My symptoms started about a year ago. I had tingling sensations from my rib cage to my foot - just on the left side. It lasted for maybe 10 mins. The exact same thing happened exactly one week later. I didn't have problems walking or talking or any other symptoms. I brushed this off. Then in Dec of last year, I had issues with swallowing. It gradually got worse to the point that I had trouble getting yogurt down. I was originally diagnosed with acid reflux/GERD issues because I had a tightness in my throat and the ENT said the back of my throat was bumpy due to acid reflux. I have had these issues before and was prescribed Protonix which helped right away. Not this time. A couple weeks went by with no relief and I was diagnosed with Thrush - my tongue was white. They assumed that the Thrush was in my throat because of the issues with swallowing. (I was given antifungals for 4 weeks.) I wasn't able to get in for an endoscopy until the end of January and of course, there were no signs of thrush. So I'll never know if I actually had it in my throat. It took about 3-4 weeks before swallowing was normal for me again.
Then in March - I was experiencing the tingling sensations more often. I have Hashimotos, (have had it for over 10 years) and found out that I was being over-medicated so I thought it was due to that. My PCP had my Vit D, Calcuim and B12 checked. Vit D was low - I think it was at 14 - so I'm taking a high dose of that for 8 weeks. B12 was at 330 - which is "normal." Since I was having tingling and numbness at this time, she sent me to a Neurologist. He recognized that my B12 was on the low end of "normal" and told me to take 500 mg of a b12 supplement. I've had MRIs of my brain, cervical spine and thoracic spine. My brain has white spots on it, but the Neuro (and my PCP) said that they see this on a lot of scans and that it doesn't mean anything. My thoracic spine was normal. My cervical showed inflammation. (The word "lesions" was never used for any of my MRIs....does this make a difference?) He says he is pretty sure it's not MS but hasn't ruled it out yet. He had my copper tested and I found out as of last week that that was normal as well. My iron (9) and ferratin (10) levels were slightly low so I'm taking an iron supplement, too.
Since taking the B12 and VitD supplements, my symptoms are fewer and further between. I feel better - my appetite is back....I don't feel massively depressed anymore....my anxiety is to a bare minimum....I rarely feel tingling and if I do it's not nearly as intense, it's barely noticeable....my brain is not in a fog. I still get numbness in my toes ...but it's random and doesn't last long.
But my questions are: what questions should I be asking my neurologist? Can inflammation on the cervical spine mean MS - even though the word "lesion" wasn't used? If it is a dx of vitamin deficiencies and not MS, how long does it take for the symptoms to go away?
Welcome to ThisIsMS, clhbix.

Your vitamin D level (at 14 ng/mL) is dangerously deficient. Exactly what is the "high dose" your PCP prescribed?

There are vitamin D receptors on almost every cell in the body; vitamin D is needed by every system in the body. Deficiency can result in symptoms in any system – cardiovascular, digestive (your acid reflex?), endocrine (your Hashimoto's?), nervous (tingling/numbness), and all the rest.

After the 8 weeks of vitamin D supplementation, no doubt your PCP will test again for your vitamin D level. The only way to know that you have achieved an acceptable vitamin D level is by testing. Always request your own copy of the test results so that you have the actual result numbers.

The consensus of the 48 vitamin D experts associated with the California-based group, GrassrootsHealth (http://www.GrassrootsHealth.net) recommends that the vitamin D level should be at least 40-60 ng/mL. There are neurologists who recommend a level of 70-100 ng/mL for their patients with neurological symptoms.

The length of time required for symptoms of nutrient deficiencies to resolve varies from person to person and may depend on how long and how severe the deficiency has existed. Symptoms are not always reversible.

The issue of vitamin D deficiency should be discussed with your neurologist; if he is not comfortable with that area of medicine, ask for a referral to a specialist.
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Re: Beginning of DX journey....

Postby NHE » Fri Apr 28, 2017 3:11 am

clhbix wrote:Since taking the B12 and VitD supplements, my symptoms are fewer and further between. I feel better - my appetite is back....I don't feel massively depressed anymore....my anxiety is to a bare minimum....I rarely feel tingling and if I do it's not nearly as intense, it's barely noticeable....my brain is not in a fog. I still get numbness in my toes ...but it's random and doesn't last long.

But my questions are: what questions should I be asking my neurologist? Can inflammation on the cervical spine mean MS - even though the word "lesion" wasn't used? If it is a dx of vitamin deficiencies and not MS, how long does it take for the symptoms to go away?

Thank you in advance for your help and suggestions.


It's good to hear that you're doing better. Give the supplements a chance to work and the body time to heal. B12 isn't an instant cure, but it should help your healing and also help prevent you from getting worse. Recovery from B12 deficiency induced neurological damage can be tenuous at best. It's good that you caught it early. In the review paper cited below, only 14% of the 57 B12 deficiency patients experienced a complete reversal of symptoms. The ones that did had more mild symptoms.


Potential Outcome Factors in Subacute Combined Degeneration
Review of Observational Studies
J GEN INTERN MED 2006; 21:1063–1068.

    BACKGROUND: Subacute combined degeneration is an acquired myelopathy caused by vitamin B12 deficiency. Therapy with B12 leads to improvement in most but to complete recovery in only a few patients. Prognostic indicators in subacute combined degeneration are unknown; therefore, predicting complete recovery of neurologic deficits is challenging.

    PURPOSE: To identify potential correlates of outcome and to generate hypotheses concerning predictors of complete resolution of neurologic deficits in subacute combined degeneration.

    DATA SOURCE: We searched EMBASE (1974 to October 2005), MEDLINE (1968 to October 2005), and references from identified reports.

    REPORTS SELECTION: Reports of patients with subacute combined degeneration containing results of magnetic resonance imaging (MRI) and description of outcome and 1 patient treated by the authors.

    DATA EXTRACTION, SYNTHESIS: We extracted data from 45 reports and 57 patients (36 males, 21 females; age range: 10 to 81) with a diagnosis of subacute combined degeneration, and estimated the strength of association between clinical, laboratory, and radiological factors and complete resolution of signs and symptoms.

    RESULTS:Eight patients (14%) achieved clinical resolution and 49 (86%) improved with B12 therapy. The absence of sensory dermatomal deficit, Romberg, and Babinski signs were associated with a higher complete resolution rate. Patients with MRI lesions in < or = 7 segments and age less than 50 also appear to have higher rates of complete resolution.

    CONCLUSIONS: B12 therapy is reported to stop progression and improve neurologic deficits in most patients with subacute combined degeneration. However, complete resolution only occurs in a small
    percentage of patients and appears to be associated with factors suggestive of less severe disease at the time of diagnosis.

Free full text.
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Re: Beginning of DX journey....

Postby clhbix » Fri Apr 28, 2017 5:29 am

jimmylegs wrote:ah nice one. did he write it for serum mag? or does it say RBC? or both?? lol


I haven't seen the script. He sent it right over to the lab I go to.
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Re: Beginning of DX journey....

Postby clhbix » Fri Apr 28, 2017 5:31 am

Your vitamin D level (at 14 ng/mL) is dangerously deficient. Exactly what is the "high dose" your PCP prescribed?

50,000 units once a week.
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Re: Beginning of DX journey....

Postby lyndacarol » Fri Apr 28, 2017 9:40 am

clhbix wrote:Your vitamin D level (at 14 ng/mL) is dangerously deficient. Exactly what is the "high dose" your PCP prescribed?

50,000 units once a week.
I suggest you examine the dose interval and dosage recommendations by GrassrootsHealth (http://www.grassrootshealth.net) to increase your blood level of vitamin D to a more optimal level. Then, discuss your situation with your doctor.

Dr. Bruce Hollis – Vitamin D Dosing Interval (39 min.):
https://www.youtube.com/watch?v=FbheaULwRAk

Sharon McDonnell, epidemiologist at GrassrootsHealth, introduces Bruce W. Hollis, PhD, Medical University of South Carolina, who speaks on the importance of daily vitamin D dosing and why our bodies need to maintain a steady amount of D3 to reduce the risk of many diseases like cancer.

@0:52 Hollis: I've personally thought about this for a long time, being involved in vitamin D biochemistry and clinical trials, and in reading the literature of how all this fits together.
@3:49 Slide explains pathway for Vitamin D and Tissue Homeostasis

https://www.youtube.com/watch?feature=p ... wRAk#t=996
@16:37 You can get away with weekly doses, monthly doses, and even quarterly doses, if you are looking at skeletal problems. But if you're looking at other problems, such as cancer suppression, immune function, we feel that these doses… Weekly dose, you know, you might get away with it, but in these other doses absolutely not – monthly doses, quarterly doses, yearly dose. If you really want to have physiologic equivalence for all these studies, you would want to do a daily dose.

From the paper by Dr. Bruce Hollis:
"The Role of the Parent Compound Vitamin D with Respect to Metabolism and Function: Why Clinical Dose Intervals Can Affect Clinical Outcomes" in the Journal of Clinical Endocrinology and Metabolism
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3849670/

Chart for Effect of Dosing Interval on Vitamin D3 Serum Levels: http://www1.grassrootshealth.net/media/ ... ervals.pdf


Efficacy of different doses and time intervals of oral vitamin D supplementation with or without calcium in elderly nursing home residents. (2008)
http://www.ncbi.nlm.nih.gov/pubmed/17874029

Conclusion: Daily vitamin D was more effective than weekly and monthly administration was the least effective.


Chart showing intake level necessary for change in serum level:
http://grassrootshealth.net/media/image ... single.pdf
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Re: Beginning of DX journey....

Postby jimmylegs » Fri Apr 28, 2017 4:43 pm

hi again i missed your reply earlier.

will be good to see the magnesium result when it's in.
it's important to keep vit d3 cofactors topped up while high dosing d3. otherwise imbalances can occur, especially over the long term.

in one toxicity case posted here recently (probably under 'natural approach') the patient took 60K IU d3 per week for 4 years and really messed himself up.

in my case 4K per day for a few years did the trick to mess me, and my magnesium levels, and my throat up thoroughly! i had started with low background magnesium levels in the first place, so that didn't help either. so glad things are better now :D

once i got a few minerals sorted out, i found that the one mega dose of d3 had over three times better effect on serum levels than before. i did two main d3 megadoses. 50K/d x 10d, and then 50K/d x 8d. when i did the second one i was expecting a 50 nmol/L boost, based on what had happened the first time. second time, i got a 170 nmol/l boost instead. to 271 nmol/L total. which is 109 ng/ml - cofactors rock :D :D :D magnesium was part of that picture, but was not the only important player.

anyway yeah will keep an eye open for that mag level when it comes in - ttfn!
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: Beginning of DX journey....

Postby clhbix » Sun Apr 30, 2017 10:14 am

Thanks, Lynda! That calculator shows that my dr. prescribed just enough, but not the most she could have dosed. But I have another week or so before I am re-tested.

What I'm still curious to know is that if anyone with an MS diagnosis was told that they had inflammation in their cervical spine?
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