Hello

New members should feel free to introduce themselves here

Hello

Postby bbeardwv » Tue Nov 27, 2018 6:36 am

Hello.

My journey began in August 2018 when I finally went to my PCP for a chief complaint of insomnia, extreme fatigue and leg spasms. He diagnosed me with RLS and prescribed Mirapex, which helped a little. I’ll give him credit for allowing extra time for my appointment and listening to all of my additional symptoms and ordering blood work. However, the additional symptoms (pins and needles over entire body, overactive bladder, extreme fatigue) were basically ignored, even though my lab results showed high eosinophils at 10.6% (actual number was .74 K/uL). Electrolytes and B12 were in the high normal range. Lyme disease test was negative. He seemed unwilling to order additional testing, so I sat on my hands for a while.

Fortunately, I have a family friend who specializes in internal medicine. I finally broke down and asked her if she would review my symptoms. She listened patiently and ordered a brain and neck MRI (on the first visit). The MRI looked normal with the exception of an area of gliosis in my left parietal lobe. She is certain I have MS and referred me to a neurologist who specializes in that area.

All that said, for the past four months I’ve been in pain, having insomnia with leg and back spasms, and difficult to function most days, and I feel that I’ve communicated these issues to my doctor without specifically asking for pain meds. Subsequently, pain meds have not been offered to me (seems logical).

My question is this...while conceivably waiting for another month or two for an official diagnosis, is there any reason a doctor would not prescribe a pain reliever? Would temporary pain relief interfere with tests conducted by the neurologist?

Having the appearance of a junkie is one of my fears...I’m scared to directly ask for the pain relief as I don’t want to ruin our family relationship.

Thanks for taking the time to read. :smile:
bbeardwv
Newbie
 
Posts: 7
Joined: Tue Nov 27, 2018 4:13 am

Advertisement

Re: Hello

Postby NHE » Tue Nov 27, 2018 7:03 am

Welcome to ThisIsMS. Neuropathic pain in MS is typically treated with Neurontin which is also known as gabapentin. It's a non-narcotic drug which was initially approved to treat seizures, but has been found to be useful for treating neuropathy (pins and needles type pain).

Spasms are often treated with a drug called baclofen (also non-narcotic). However, I would try taking a good magnesium supplement like magnesium glycinate first. It may prove to be helpful. MS patients are often found to be low on magnesium and the baclofen would do nothing to help a magnesium deficiency.
User avatar
NHE
Volunteer Moderator
 
Posts: 4985
Joined: Sat Nov 20, 2004 3:00 pm

Re: Hello

Postby NHE » Tue Nov 27, 2018 8:36 am

bbeardwv wrote:Would temporary pain relief interfere with tests conducted by the neurologist?

Conceivably. If you relieve a problem and it's no longer a symptom and a doctor is trying to diagnose you partly based on symptoms, then not having the symptom could potentially be problematic. However, if your spasms are partly due to a magnesium deficiency, then it might be best to go ahead and try some magnesium to see if it helps the spasms.
User avatar
NHE
Volunteer Moderator
 
Posts: 4985
Joined: Sat Nov 20, 2004 3:00 pm

Re: Hello

Postby Scott1 » Wed Nov 28, 2018 2:32 am

Hi,

Gliosis just means there's some damage or inflammation present but it is a long way from an MS diagnosis. Clearly it's a sign of something but I think you should expect a lot more testing before you get an answer. You may have give a sample of spinal fluid.

The important thing now is to focus on definitive answers and not wait for an expected MS diagnosis. The neurologist is going to have to look at other possibilities based on what you say the MRI shows. That's just not definite enough if that is all it showed.
The question you need to keep throwing back at them is "why do I fell like this?"

It may require you to be persistent but just keep hounding.

Regards,
User avatar
Scott1
Volunteer Moderator
 
Posts: 1431
Joined: Wed Oct 22, 2008 2:00 pm

Re: Hello

Postby bbeardwv » Wed Nov 28, 2018 5:13 am

Thank you for the feedback.

I do understand that gliosis is a repair mechanism of the brain and that it could be a result of injury from a variety of causes. My visit to the neurologist will be scheduled soon and with all the anticipated testing, we’ll get to the bottom of this. Believe me, I’m not one to give up. :-D

Meanwhile, the steady dysesthetic pain, muscle tightness in my legs, and insomnia is driving me batty. A bit of pain relief would benefit my mental state greatly.
bbeardwv
Newbie
 
Posts: 7
Joined: Tue Nov 27, 2018 4:13 am

Re: Hello

Postby jimmylegs » Wed Nov 28, 2018 5:46 am

hi sorry to hear you are suffering.

strong second on the idea of taking a closer look at magnesium status. it's been established in the med literature that mag can reduce dependence on pain meds. i've posted related research abstracts in the 'natural approach' forum here at TiMS.

if not already in the mix, dark leafy greens are your friend there. swiss chard, spinach, kale. aim for 9 half cup servings (cooked as a side veg or mixed in a soup or stew) per week. nutrient dense foods are the best foundation - a quality supplement is a great way to top up, but it doesn't come with all the other benefits of whole food. that is part of the reason why for me a well balanced multi is the basis for any supplements and others can be added in as needed :)

my friend was just going through chemo recently and pain was a major side effect. we strongly suspected mag depletion but were having a rough time getting tests done. also we could only do so much mag supplementation during chemo, especially the AC part at the beginning. so in her case she topped up via epsom salt baths (ie mag sulfate) and it helped.

then when she was in hospital for a week with an infection, they monitored her serum mag and sure enough it was deficient. they topped her up via iv until her levels were just barely inside the bottom of normal and then when she asked for more because she could not do an epsom salt bath there, they said no. when she was released they sent her home with pain killers and no info about how to keep her mag status in good shape. luckily here we know all about how to take care of it...

as to your scenario, please describe your diet and lifestyle. in your opinion is it a match for healthy as per public health messaging re daily intakes of vegetables esp leafy greens and berries, whole or minimally processed protein and carb sources, healthy fats, physical activity etc?
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!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11779
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby bbeardwv » Wed Nov 28, 2018 9:20 am

Before the symptoms began in early August, I would be in the gym at least three times per week lifting weights in addition to a weekly 45 minute Spin class. I was maintaining my weight at 162lbs and 22% body fat, but that has (ahem) changed a little for the worse since the onset...

Mountain biking with my brother every few weeks and the occasional kayak day with friends was also high on my list throughout summer and fall. Fall and winter activities include trail riding with my dirt bike and then skiing thru the winter.

As for diet, fresh dark greens (spinach, kale), broccoli, carrots, sweet potato, celery, corn are my favorites as well as a variety of salad mixes. Fruit intake includes strawberries, blueberries, bananas, lemons, limes, oranges, and other seasonal products.

Meat intake generally consists of chicken, salmon, tuna, shrimp, and lastly beef and pork.

Grains are normally whole varieties of oatmeal (3-4 x week), rice or pasta once per week.

Fats are used sparingly.

I use a once a day adult multivitamin as well.

My diet is not perfect, but I was watching my calorie and macronutrient intake on the MyFitnessPal app.

Edit: I love almonds as a snack...usually eat along with some dried berries.

I work from home in the IT field. That said, because I’m home, I’m the family cook. Due to my illness, healthy food prep has not been high on my list...I’d rather sleep at every opportunity. Exercise is painful and now requires a week to recover.

Feeling like I do has left me feeling depressed and cut off from my friends as they are still doing the activities that I love. A friend asked if I would be able to ski in Vermont over Christmas break...it’s killing me to say no...
bbeardwv
Newbie
 
Posts: 7
Joined: Tue Nov 27, 2018 4:13 am

Re: Hello

Postby jimmylegs » Wed Nov 28, 2018 10:57 am

ok this is great info. i will put it out there for consideration that your physical activity level may have been a bit much for your status quo nutrient intake. maintaining weight is good but essentials can be depleted in the background. magnesium is at particular risk where stress of any kind is concerned, whether mental, emotional or physical such as trauma, surgery or physical exertion.

great veggie choices. i hope the fruits take second place by volume :) glad to hear you have plenty of greens in the mix. i wonder if you have considered the nutrient density available via raw vs cooked forms? it's been my understanding that to get an optimal level of nutrient intake from greens, cooking to get the volume down is the way to go. that's not to say for all. certainly for a good chunk of it though. spinach benefits from a one minute boil to extract oxalic acid. kale is okay with a five min steam. this is all info taken from whfoods.com. all the nutrient content info in their dark leafy greens tables assumes the greens are cooked. last eve at my friend's place we turned two entire bunches of kale into 3.5 one-cup servings (well it was 7 half cups but a cup at a time is the serving size, and 1.5c x 3 per week is the recommendation there.

meat, grains and fats sound good too. i like that you gave frequency detail on the grains.

re snack, i'm a trail mix fan myself :) like to mix up nuts, seeds and a little dried fruit.

re the adult multi, is it regular or 'active'? is it a one-a-day, or divided doses eg a three-a-day? re the magnesium content, when you consume a full day's ration using this supplement, how many mgs of magnesium are you getting daily, and in what chemical form?

does your app let you track micronutrients too? if so, can you set a personalized daily target for one or more specific micronutrients?

i feel your pain re limitations. blew out acl (at work, on the hill with my team) a few yrs ago. havent been back on snow yet, it sucks! i've had academic priorities on the front burner. almost done now. i'm not going to let this decade end without getting back out there though!!
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!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11779
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby bbeardwv » Wed Nov 28, 2018 1:46 pm

Yes, fruits were mainly for breakfast in my oatmeal, as a side with hard boiled eggs, or with Greek yogurt.

As for the magnesium, I was taking it directly in a Calcium/Magnesium/Zinc tablet as an oxide and gluconate - 400 mg. Started taking this supplement because I heard it would help prevent restless leg.

The one a day men’s vitamin has magnesium as a stearate - 140mg. Moved to this supplement about a month ago and no longer take the first one.

Either way...it doesn’t appear to have an effect on the RLS, which is how I began this journey of doctor visits and the MRI’s.
bbeardwv
Newbie
 
Posts: 7
Joined: Tue Nov 27, 2018 4:13 am

Re: Hello

Postby jimmylegs » Wed Nov 28, 2018 3:36 pm

how much calcium was in there with the 400mg mag oxide/gluconate? i'm curious about the ratio. also, any rationale for choosing tablet form over liquid or powder capsule? fwiw neither of those magnesium forms stand out in my mind as useful for absorption/utilization in tissue. mag oxide is an inorganic form rather than one of the organic forms. not as soluble. goes through better than it goes *in*. at higher intakes, a .. shall we say *very* effective laxative.

re non-active one a day and mag stearate, consider a higher quality divided dose three a day, designed for active vs average joe adult.
mag stearate as the chemical form sounds odd to my mind. i think of mag stearate as an engineering thing to help pill components flow and bind into tablet form properly.
if i have ever heard anything at all about its value in terms of bioavailability, it has definitely not come across my desk enough to say so and certainly not to stick as something i would recommend.

what else is in your multi? can you link us up to an image of the label's ingredient details?

next, daily intake target. the lit suggests that current intake recommendations are low and that individuals should consider their own daily target to be: 7-10 mg / kg body weight / day. ppl who have higher drains on mag status eg high levels of exercise (among a bunch of other things) should aim for the 10 end of the spectrum. again from food sources first.

what would you say your average daily mag intake from food would be? a table of amounts for healthy sources for given serving sizes should come up underneath the first google result if you use search terms: whfoods magnesium nutrient rating chart

as for whatever top-up may be needed, would you consider a better quality mag product eg the mag glycinate mentioned above? i know more than one member here for whom the solution has been no more challenging than a simple product switch.

if it doesn't work there are a handful of other nutrients to look into in more detail. may as well be systematic. ensuring mag is done right is relatively low hanging fruit.
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!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11779
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby bbeardwv » Wed Nov 28, 2018 4:51 pm

Honestly, I never gave supplements much consideration until recently.

Certainly, I’d like to try a good quality supplement, especially if it fixes things.

I initially looked into a B-12 deficiency (because it shares a symptom or two with MS), but my numbers on the blood work look good. I questioned the serum level as it doesn’t necessarily indicate the amount being absorbed. My second doctor explained that is not a likely problem based on some other value in my series of tests (don’t recall what that one was).

Anyhow, the supplements are not big brand name..just off the shelf low budget grocery store variety. But I’ll find an image to link tomorrow.

Thanks for your help and interest.

As much as I want things to be dxd, I really don’t want to be a member of the MS club. These weird symptoms certainly have given me a new insight to the health problems that everyday people are facing.
bbeardwv
Newbie
 
Posts: 7
Joined: Tue Nov 27, 2018 4:13 am

Re: Hello

Postby jimmylegs » Wed Nov 28, 2018 5:26 pm

i'll keep an eye open for the multi info. no probs re help. the good news is, the info i share works for anyone and we just also happen to know which are the particular red flags for ms patients. doing whatever you can to ensure you don't match a typical ms patient's profile, is probably a good starting place :)
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!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11779
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby NHE » Fri Nov 30, 2018 10:52 pm

bbeardwv wrote:I initially looked into a B-12 deficiency (because it shares a symptom or two with MS), but my numbers on the blood work look good. I questioned the serum level as it doesn’t necessarily indicate the amount being absorbed. My second doctor explained that is not a likely problem based on some other value in my series of tests (don’t recall what that one was).

What was your B12 level? A good range to aim for is 500-1000 pg/mL. For more information regarding B12, you may be interested in reading the following topic. natural-approach-f27/topic24857.html
User avatar
NHE
Volunteer Moderator
 
Posts: 4985
Joined: Sat Nov 20, 2004 3:00 pm

Re: Hello

Postby jimmylegs » Sat Dec 01, 2018 6:25 am

hey bb, fyi couple new posts - one in natural approach (under zinc) and one in exercise & pt, that may interest you :)
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!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11779
Joined: Sat Mar 11, 2006 3:00 pm

Re: Hello

Postby jimmylegs » Sat Dec 01, 2018 9:05 am

A good range to aim for is 500-1000 pg/mL
or, 450-600 pg/ml, depending who you ask
natural-approach-f27/topic30572.html#p255791

i've been on board with at least 500 for years but have not had great luck with the evidence base for it to date (have not truly dug in on it mind you). ebbing et al (2009) is a reasonably helpful study but it came at me sideways. i don't think i would have found it normally,., given the way i would tend to search for relevant research. maybe one day i'll have time to prove myself wrong.
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!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11779
Joined: Sat Mar 11, 2006 3:00 pm

Next

Return to Introductions

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service