Waiting For Neurologist Appt

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Waiting For Neurologist Appt

Postby Hope1 » Sat Oct 14, 2017 2:29 am

Hi everyone,
I am having the following symptoms and I am concerned this could be MS:
Ants crawling under skin in waves
Fatigue (since Spring)
Terrible brain fog (since Spring)
Blurry vision (since Spring)
Tingling on toes, forearms and hands
Heartburn
Strong pressure on my chest
Small cough (practically for months with a few weeks rest)
Easily out of breath
Feeling I cannot finish to swallow saliva completely
Chills that cause me to shake once a day for the last 3 days
Trouble sleeping because I keep waking up- i think I may have apnea as I also recently started snoring.
We just moved internationally to the US, which means I do not have any sort of support network. It took me two months to see an internal medicine doctor. I saw him on Tuesday, he ordered blood tests and called the next day to tell me the vitamin and Thyroid level where all normal (innocent me... I answered: ‘well that’s good news’ ) and I should see a neurologist.
My appointment is not until November 1st but I am considering going to the ER to move things faster.
My husband started a new job in April and I have two kids aged 12 and 13 so it tricky logistically to head to the ER but I feel like I am progressively deteriorating very fast and it seems irresponsible to wait two weeks for treatment.
This is a scary time and I am so grateful for the chance to join this community.
Hope1
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Re: Waiting For Neurologist Appt

Postby ElliotB » Sat Oct 14, 2017 4:43 am

Hi Hope and welcome to TIMS. Sorry your are ill. Have you had comprehensive blood work done?
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Re: Waiting For Neurologist Appt

Postby Hope1 » Sat Oct 14, 2017 4:48 am

Thank you. Yes, I had blood tests done and I think they were comprehensive...
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Re: Waiting For Neurologist Appt

Postby jimmylegs » Sat Oct 14, 2017 5:15 am

hi hope and welcome. do you have access to your bloodwork results so far? could point up any gaps in interpretation or number/type of tests run to date. has anyone referred you to a dietitian?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Waiting For Neurologist Appt

Postby Hope1 » Sat Oct 14, 2017 5:44 am

Yes. I am new to the forum so I hope it is ok to post them in the body of this message:

SODIUM 137 mEq/L 133-146 mEq/L
POTASSIUM 3.9 mEq/L 3.5-5.1 mEq/L
CHLORIDE 102 mEq/L 98-109 mEq/L
BICARBONATE 30 mEq/L 21-31 mEq/L
CALCIUM 9.5 mg/dL 8.3-10.5 mg/dL
ALBUMIN 4.6 g/dL 3.5-5.7 g/dL
BLOOD UREA NITROGEN 13 mg/dL 2-25 mg/dL
CREATININE 0.79 mg/dL 0.60-1.30 mg/dL
GLUCOSE 82 mg/dL 65-100 mg/dL
PROTEIN, TOTAL 7.1 g/dL 6.4-8.9 g/dL
ALT (SGPT) 13 Unit/L 0-52 Unit/L
ALKALINE PHOSPHATASE 48 Unit/L 34-104 Unit/L
AST (SGOT) 14 Unit/L 0-39 Unit/L
BILIRUBIN,TOTAL 0.8 mg/dL 0.0-1.0 mg/dL
GFR(African American,Est) >60 mL/min/1.73m2 >=60 mL/min/1.73m2
GFR(non-African Amer,Est) >60 mL/min/1.73m2 >=60 mL/min/1.73m2

WHITE CELL COUNT 5.2 K/UL 3.5-10.5 K/UL
RED CELL COUNT 4.35 M/UL 3.80-5.20 M/UL
HEMOGLOBIN 13.3 g/dL 11.6-15.4 g/dL
HEMATOCRIT 37.9 % 34.0-45.0 %
MCV 87 FL 80-99 FL
MCH 30.6 pg 27.0-34.0 pg
MCHC 35.1 % 32.0-35.5 %
RDW 12.4 % 11.0-15.0 %
PLATELET COUNT 283 K/UL 140-390 K/UL
Hope1
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Re: Waiting For Neurologist Appt

Postby jimmylegs » Sat Oct 14, 2017 6:09 am

ok that's a pretty basic/common panel. doesn't contain much info of interest when investigating possible nutritional contributions to ms, or associated symptoms consistent with those seen in ms.

there's a lot to rule out en rte to an ms diagnosis and many nutritional considerations may be missed along the way. it's a good idea to spend equal energy optimizing health as is spent searching for a diagnosis. a referral to a dietitian can be a very useful piece of that to make sure that your nutrient profile is inconsistent with that of a typical ms patient's.

you can request an array of tests. if access to such tests via the doc or ER is not feasible, online requisitions are pretty affordable in the us compared to other places i've noted.

nutritional tests often come back normal, which downplays their utility. because nutrient deficit states often occur within reference ranges, the coarse grained interpretation of normal vs not is insufficient. low normal is often consistent with a patient's level while high normal is consistent with healthy controls.

the oldest and most common nutritional differential dx for ms is serum cobalamin (vit b12). another one to watch for is serum magnesium (which can affect your body's ability to convert sunshine to vit d3 in skin; d3 is another one to watch for when it comes to autoimmune illness such as ms). serum zinc can influence serum uric acid levels; both of which are typically lower normal in ms patients. it's not wise to treat single nutrient deficits with single nutrients in therapeutic doses or megadoses. there are many interactions to consider. for example if zinc is low and you also have low serum ferritin (iron), adding zinc alone will interfere with iron absorption making the iron situation worse (with potential consequences in the fatigue department). care is needed to do everything in balance, and an excellent foundation for that is to use healthy nutrient dense foods.

a referral to a dietitian could be really helpful in that department - if you decide to go, showing up with a minimum three day food/fluid/supplement/medication diary will be a solid step in the right direction! diet/lifestyle gaps may well correspond to deviations from optimal essential nutrient levels in serum. if so, then you have some easy action items to pursue. the good news is that if your problems are indeed nutritional and are also early on, there's a better chance of issues being reversible. personally, i played with fire for too long and now i have permanent damage. lesson learned!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Waiting For Neurologist Appt

Postby Hope1 » Sat Oct 14, 2017 7:33 am

Thank you so much Jimmylegs. I am absolutely going to take this all into account. I could live with where I am at (even though it is such a pain to have weak legs and arms) but I am petrified with the thought of this getting any worse.

I am going to look for a recommendation to a dietitian in this area and will definitely explore that route as well.

I am on my way to the ER now. I hope they do not send me away. This morning I even had trouble swallowing breakfast and I am pretty sure I stop breathing here and there at night so I do not want to take any risks by delaying a diagnosis further. My hope is that they can perform an MRI there already to help speed up the diagnosis.
Hope1
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Re: Waiting For Neurologist Appt

Postby jimmylegs » Sat Oct 14, 2017 7:50 am

when i had the worst difficulties with swallowing and breathing, magnesium turned it around in days. i was so depleted however, that it would be years before i could go a day without feeling issues return as soon as i backed off on my diligent attention to magnesium intake. it took a very long time to get tissue stores restored to levels which allow me to be a little more lazy. but i still work hard to optimize my dietary magnesium intake, and i always have a high quality highly absorbable supplemental form on hand.

a blood testing option available to ppl in the US
http://www.lifeextension.com/Vitamins-S ... lood-Tests

i hope you can access enough tests to forestall diagnosis and avoid lifelong drug payments. in my case, recovering from being sure i would die of asphyxia, after one pharmacists's magnesium recommendation, gives me a lot of confidence in nutrition as a meaningful first step.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Joined: Sat Mar 11, 2006 3:00 pm

Re: Waiting For Neurologist Appt

Postby Hope1 » Sat Oct 14, 2017 8:47 am

So, if they confirm MS, do you think I should not be taking any medication? I was thinking I should start with it along with the dietary changes.
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Re: Waiting For Neurologist Appt

Postby jimmylegs » Sat Oct 14, 2017 9:34 am

i think people in general have been to some degree programmed to gun for a diagnosis. some pursue an elusive dx for years, without devoting adequate attention to optimizing health along the way.

i'm not saying what you should do if and when you get any kind of diagnosis. i'm suggesting that in the time frame individuals often face en rte to a possible future dx, that optimizing their health as best they can is rarely pursued and i don't know if it's typically if ever recommended by health care professionals. at the very least, by optimizing health, individuals would then be in the best possible shape to meet future challenges. and docs won't have their efforts to diagnose potentially muddied by signs and symptoms of nutrient deficit. once a diagnosis is established, such symptoms can get swept under the rug as just part of that patient's disease experience.

eg dysphagia - just a thing for ms patients.
http://journals.sagepub.com/doi/abs/10. ... 8509358089

well, my dysphagia was a consequence of magnesium depletion secondary to vit d3 excess. i'm glad that random pharmacist, who had no idea i had an ms diagnosis, spotted my problem and got me onto the right track. lifechanging.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Joined: Sat Mar 11, 2006 3:00 pm

Re: Waiting For Neurologist Appt

Postby ElliotB » Sat Oct 14, 2017 9:35 am

You would probably want to do additional blood work to find out your Vitamin B & D levels at a miniumum.

What type of diet do you follow? What type of foods do you eat?

Are you taking any nutritional supplements? If so which ones and what amounts?

How old are you?



Taking medication is a personal choice that you will have to make. Although I take a DMD, there is little evidence that any of them really work. They may. I can't tell you if mine is working. I am quite proactive with diet, exercise and supplements and am doing reasonably well but frankly, there is no way of knowing the reason why.
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Re: Waiting For Neurologist Appt

Postby Hope1 » Sat Oct 14, 2017 10:34 am

Thank you! I am typing on my phone so please excuse typos. I have been taken in. An EKG and an X-ray of my chest have both come back normal. MRI has been requested for today. It will take hours, but I do not mind.

I am going to ask if they have checked those other values. Today they have drawn more blood but I think it was to look for heart problems.

I completely agree at working on my health at all fronts. I just wasn’t sure I would dare to doknly that and no medication if diagnosed as I am so worried about the progression. I have not been taking any vitamins or supplements other than probiotics. I am 45 years old, female. I have not been exercising much at the gym due to fatigue but I would hike and ski last year. I eat a bit of everything but I try to avoid wheat, although unsuccessfully... we barely eat anything processed, I cook home meals and try to buy organic wherever possible. I will definitely look into the dietitian though. It is what I am doing while I wait for the MRI.

Thank you so much for your time, tips and support. I cannot tell you how much I appreciate it.
Hope1
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Re: Waiting For Neurologist Appt

Postby jimmylegs » Sat Oct 14, 2017 10:48 am

no problem. a dietitian will be able to help you assess whether your food routine is helping you meet or exceed public health recommendations for daily essential nutrient intakes.
locally (to me), researchers have found that over 99% of people do NOT meet dietary recommendations. nutritional issues are much easier to see with the advice of a professional dietitian. meanwhile science is still working its way around to developing appropriate healthy reference ranges for essential nutrients in serum.

even though serum levels often represent a tiny fraction of total body stores, a clear difference between serum levels in patients and those in healthy controls can often be identified. for as long as both these groups are encompassed within 'normal' raference ranges, mainstream medicine will continue to miss nutritional red flags in bloodwork.

serum ferritin is the most obvious suspect when it comes to fatigue in women (premenopausal women especially). you'll most likely have a very easy time getting the docs to agree to a serum ferritin test if it has not already been done by now. if not, definitely could be worth taking a closer look - even though your hemoglobin level looks decent.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Re: Waiting For Neurologist Appt

Postby Hope1 » Sat Oct 14, 2017 11:24 am

Also, something that has always been in the back of my mind is food intolerances. I do not have any food allergies but I could definitely have intolerances. I did have some major digestive issues 10 years ago. My son, 13, has lots of allergies and gains weight extremely easily. I think he has intolerances that are affecting his immune system. My goal for this school year was to figure this out and it still is but now I have two things to work on... Aside from neurologists and dietitians, would immunologists not have a role in conditions like MS?
Hope1
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Re: Waiting For Neurologist Appt

Postby jimmylegs » Sat Oct 14, 2017 12:15 pm

the immune system uses nutritional ingredients to function properly. i've put a family friend thru a nutritional boot camp of sorts in the past, and have seen lab tested food sensitivities clear up at follow up testing.

related:
Immunological aspects of sport nutrition
https://search.proquest.com/openview/8c ... bl=2041954
"Dietary deficiencies of protein and specific micronutrients are well known to be potential causes of immune dysfunction and an adequate intake of some essential minerals including iron and zinc and the vitamins A, D, E, B6 and B12 are important to maintain a healthy immune function."

for immune and gi issues one of the things i'd take a closer look at would be zinc status.

Multiple impacts of zinc on immune function
http://pubs.rsc.org/-/content/articlela ... ivAbstract
"Even though zinc is essential for virtually all processes in the human body, observations during zinc deficiency indicate that the absence of this trace element most severely affects the immune response."

Zinc supplementation tightens “leaky gut” in Crohn's disease
http://onlinelibrary.wiley.com/doi/10.1 ... 00003/full
"Our findings show that zinc supplementation can resolve permeability alterations in patients with Crohn's disease in remission."

Nutritional Deficiencies in Morbidly Obese Patients: A New Form of Malnutrition?
https://link.springer.com/article/10.10 ... 007-9350-5
"...nutritional deficiencies can be found in both normal-weight population and in the obese population. In this review, we examine the prevalence and manifestations of various mineral deficiencies in obese patients."

just cherry picking, but there's much more related research to be found if interested.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10783
Joined: Sat Mar 11, 2006 3:00 pm

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