Please help me cope with my symptoms

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

Re: Please help me cope with my symptoms

Postby jimmylegs » Mon May 14, 2018 2:44 am

i've been having a look at the crohn's lit and think serum selenium would be a good test to add to the list. it's relevant for ms too:

https://nutritionj.biomedcentral.com/ar ... 2891-13-62

healthy food sources
http://www.whfoods.com/genpage.php?dbid ... #foodchart

brazil nuts are not on that chart but they are mentioned in the page text. i've previously posted research documenting their efficacy at improving serum levels with just one or two nuts per day (can't recall off he top of my head exactly how many)

maybe a good news story:

Specialized enteral nutrition therapy in Crohn’s disease patients on maintenance infliximab therapy: a meta-analysis
http://journals.sagepub.com/doi/abs/10. ... 3x15578607
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Mon May 14, 2018 3:50 pm

Thanks. I will ask about those tests but I’m not sure he will order. I focused on work stuff today. At least I was able to concentrate.

Thanks for sending the stuff on the nuts and crohns.

I really wish my symptoms would go away. My leg is in pain right now. Is there a reason why the doc seamed resistant To giving steroids unless my symptoms were extreme. I’m hoping it would just make them go away and not comeback. I know steroids are not good for you and will cause more issues if you use them regularly. But are they just a last resort?. Just looking to know when they are generally used? Not really looking to hear specifics on side effects. If there are lots of nasty side effects perhaps someone could just tell me that. Or if they usually don’t help let me know that too. Thanks.
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Mon May 14, 2018 5:25 pm

So my symptoms today are numbness on my lower spine and hard pressure on my left buttocks like someone is trying to push their thumb through hard, and some tingling down my calf to my foot. Every now and then I am feeling a tingle or numbness on my inner thigh close to my groin. While this is going on I get tingling on the side of my head. It now alternates sides and I get intermittent numbness on my face close to my eyes. Although I was bothered slightly less by my head symptoms today. My doc told me that I should contact him if the same symptom occurs for 24 hours none stop,but if I felt new feelings that come and go that it will happen and not to contact him. I want to ask him for medication. I have some gabapentin but I don’t like how it makes me feel. When are steroids appropriate?

I have access two two Neurologists. One who is an MS specialist and is hard to get ahold of and told me the steroids are basically for the extreme scary pain (my words). (He also has experience treating people who took Humira and have MS symptoms like me.
I have another neurologist at a good hospital who I can email questions and is generally very responsive and told me to contact him if my symptoms came back. (Symptoms seemed to subside to some extent the first few weeks of April)

Perhaps I’m being a whimp. I did read some medical article where people in similar circumstances were given pulse steroids and their symptoms didn’t come back at 6,12 or 18 months. I do greatly appreciate your thoughts and suggestions. I feel like I have no real support at home at this time. Thanks.
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Re: Please help me cope with my symptoms

Postby jimmylegs » Mon May 14, 2018 6:56 pm

you could always just start taking supplements now and forgo the baseline test result. just do a washout when the requisition(s) eventually come through. there will still be adjustments to make but you can see if boosting nutrient intake helps you to feel better in the interim.
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Fri May 18, 2018 12:14 am

Just to follow up. I did start the magnesium glycate. The anxiety is slightly better. My symptoms continue to get worse to be so I have begun to accept that I really have MS. I suspect that this may be the main reason my anxiety is down.

I am now interested in getting the IV steroids. I am not sure where to post my question as I didn’t see a steroid section. In general are these steroids safe in the short term? At this point I don’t see what I have to loose but the time getting them infused. Might the steroids slow down the progression while we are waiting to see if it progresses?

Also, can anyone provide guidance or suggest where to post regarding which disease modifying drugs are considered safest. I really want to do no drugs but it is feeling like everyweek I get a new symptom on top of my existing symptoms getting stronger or more painful.
Your thoughts and comments are greatly appreciated.
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Re: Please help me cope with my symptoms

Postby NHE » Fri May 18, 2018 2:02 am

Lostpuppy wrote:I am now interested in getting the IV steroids. I am not sure where to post my question as I didn’t see a steroid section. In general are these steroids safe in the short term? At this point I don’t see what I have to loose but the time getting them infused. Might the steroids slow down the progression while we are waiting to see if it progresses?

IV steroids, i.e., methylprednisolone (a corticosteroid) also known as solumedrol, help shorten the duration of an attack, but don't appear to alter the long term progression of MS. IV steroids for MS are given at a very high dose in comparison to other diseases. The treatment can readily affect one's mental and emotional status. For example, during my last infusion, I had decreased cognitive fog the first day, was particularly emotional the second day and just felt blah and run down the third day. During a previous infusion series years ago I experienced a panic attack where my brain was racing along about 5x faster than the person I was on the phone with and it was all I could do to just keep my mouth shut and not start screaming irrationally at the person. In effect, be prepared for anything. Oh, the biological activity of the IV steroids is to induce the white blood cells to die off via apoptosis and thereby temporarily reduce inflammation. The treatment is generally ok for infrequent usage to help in the case of an acute attack. However, long term use, even at a lower dosage, carries the risk of serious side effects and is not effective in treating MS. For more on the potential side effects, see the following page from the Mayo Clinic.

https://www.mayoclinic.org/drugs-supple ... g-20075216

Oh, one thing to watch out for with IV steroids is an opportunistic infection when your white blood cell counts are low. I once got one in the cuticle surrounding a fingernail and I needed to go on antibiotics to treat it.
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Re: Please help me cope with my symptoms

Postby jimmylegs » Fri May 18, 2018 7:08 am

glad anxiety has diminished. points to nutrient status being a step in the right direction. as for the rest of the symptoms, there's the rest of the nutrient list to deal with.

pls post your detailed symptom list and detailed current regimen - not just the magnesium but anything else.
eg re detailed - we know you are taking magnesium glycinate. how many mgs per day? in combo with what else if anything? any other products? devil is in the details with this stuff!!
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Re: Please help me cope with my symptoms

Postby Snoopy » Fri May 18, 2018 3:18 pm

Hi Lostpuppy,

From the information you have provided you might consider seeing a Dr. about treating your anxiety with medication. It is very possible for anxiety to cause the symptoms you are having and/or make them worse. If your anxiety was controlled it might be possible to see an improvement in your symptoms. Your thoughts, fears, concerns and being hyper-focused on what you might be feeling can make symptoms appear to be worse or even trigger those symptoms. Anxiety causes hyper-stimulation of the nerves and the reason anxiety can cause body-wide symptoms.

In regards to MS;
it is not common to treat sensory symptoms (tingling, numbness) with steroids. In this type of case steroids are usually only a temporary solution for symptoms that tend to come and go with or without intervention. Steroids are used for acute exacerbations (relapse, attack, flare-up) and are not used for symptom management. The symptoms you are having do not indicate progression but even if they did steroids do not effect the course of the disease. The medication you were prescribed (Gabapentin/Neurontin) is sometimes helpful for the symptoms you are experiencing.

Many things can cause non-specific brain lesions and doesn't necessarily indicate MS.
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Sat May 26, 2018 3:21 pm

Snoopy,
Thanks for your response. I did see a psychiatrist. Was given some Xanax to use as needed. I did add the magnesium Jimmylegs suggested. My anxiety is down a notch. I think it is because I have begun to accept a may have MS.
Just found out the other day my MS doc is having me get another mri of the brain and spine.( 3 hours worth) We were going to wait until August. I guess we should be able to see what has happened since February.
I have a question about these sensory symptoms you may be able to help me with. So if I start with tingling on the right side of my head and in my left leg, and then two months later I have tingling on both sides of my head and face, shoulders, and lower back. And all the symptoms are sensory all over my body, it does not necessarily mean that I am progressing (or have more lesions )??

In my mind i am I thinking it is progressing at a quick pace no less.

Thanks for your help. Also do you have any thought on which disease modifying med, has the least side effects/risks? If you think I am getting too far ahead for my own good let me know. If just feels like my whole body is short circuiting (intermittently) and something is going on. Thanks
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Re: Please help me cope with my symptoms

Postby jimmylegs » Sat May 26, 2018 4:26 pm

still curious about post253401.html#p253401
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: Please help me cope with my symptoms

Postby Snoopy » Sun May 27, 2018 5:47 am

Hi Lostpuppy.

Lostpuppy wrote: So if I start with tingling on the right side of my head and in my left leg, and then two months later I have tingling on both sides of my head and face, shoulders, and lower back. And all the symptoms are sensory all over my body, it does not necessarily mean that I am progressing (or have more lesions )??


In MS, progression means the person has more disabilities. Sensory symptoms aren't disabling.

Considering treatments for MS is a bit premature, at this time. You may or may not have MS, but only testing and your Neurologist can determine this. There is no symptom that is exclusive to this disease so it is impossible to determine if a person has MS simply due to symptoms. Many other conditions mimic the symptoms seen in MS and must be ruled out ruled out per the diagnostic criteria for MS (The Revised McDonald Criteria), as well as testing that would indicate MS as the most likely cause for a person's symptoms.
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Sun May 27, 2018 6:15 am

Jimmylegs,
Thanks for offering to take a look at my supplements. I have been reading about the Wahl protocol but have held off on adding a lot ofadditional supplements with no guidance.

I currently take the following: morning
200mg magnesium glycinate
20mg Prilosec
750 mg Tumeric with Pepper
Evening
200mg magnesium glycinate
750 mg Tumeric with Pepper
1200 mg fish oil (360mg omega 3)
5000 iu vitamin D3
500 mg L glutamine
Thoughts? I’m ready to add what is believed to be key suppliments.

My current symptoms are as follows (all are intermittent)
Tingling on back, sides and top of head
Numbness around both eyes but sometimes on face
Pressure, numbness and tense around spine on lower back
Also feel something on my upper back across my lays. On some days a muscle on my scapula gets extremely tight which is painful and give me a sort of stiff neck.
Pressure in left leg similar to sciatica.
Muscle tingling that moves quickly in different parts of body such as both shoulders, calfs, and arms.
Sometimes I feel like my hearing changes (like from stereo to mono)
I have had a few days that my vision seemed a little blurry or just off. I’m not sure if this is a true symptom as I turn 50 very soon and my eyes can be changing. My symptoms were generally contain to the right side of my head and left leg until the end of April.
Scheduled for next mri on Friday. I guess the MRI will help give me a direction but there seems to be much uncertainty and risks around the meds. Are there any natural diets and supplements that many use which seem to help either alone or with meds. Thanks again
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Re: Please help me cope with my symptoms

Postby jimmylegs » Sun May 27, 2018 7:45 am

mornin LP,

you've made a great start with the dose and timing of mag glycinate in relation to the 5K of D3. it's possible you could require more mag glycinate however. a serum test would be useful if you can arrange. if you're in the states, easy peasy via services like
http://www.lifeextension.com/Vitamins-S ... Blood-Test

i just had my serum mag tested, and it came back below the bottom end of the healthy 'upper normal' range identified repeatedly in the literature, yet to date still largely ignored in mainstream practice. because of the science-practice gap, no red flag from the doc. i know it's not ideal though, so will work on it independently. it takes a LOT to get into the toxic range, especially when also taking d3 which will hog it all :)

the fish oil is an excellent regiment component also. one serving per week of cold water oily fish has been shown to outperform daily supplementation for improving beneficial serum polyunsaturated fatty acid levels. i try for both :)

turmeric, presumably included as an anti-inflammatory, is not something i've studied much. i don't read up on things like l-glutamine either. in general i like natural remedies but my research focus is definitely the essential macro and (mostly) micro nutrients.

imho potentially the most useful and simplest thing you could add for the long term would be a high quality high potency three a day multivit / min for active adults. an 'active' version provides more 'umph' per capsule. with that you'll be adding a whole array of important essential cofactors to your existing regimen.

aside: the single short term therapeutic regimen that did me the most good in early days was very dense for vitamin b complex with an emphasis on b12 and b1, a lot of vitamin e, and a handful of minerals as well. turned things around almost literally overnight.

recall multis are only designed to augment, not replace, a healthy nutrient dense diet. in general an overall anti-inflammatory dietary regimen would be beneficial. that does not mean cut out any whole food with pro-inflammatory properties. (if you do that, you're potentially tossing a whole lot of 'baby' (nutrient density) out with the bath water). the idea is to balance overall intake with the score in favour of anti inflammatory foods overall. for your symptoms some bloodwork would help nail things down but i'm thinking potassium could be one to consider.

if you have records for or access to more testing, in addition to serum b12 and serum d3 the nutrients of interest for MS include (as discussed) serum magnesium as well as serum zinc, serum copper and serum ferritin.

here are some nutrient dense healthy food sources for the nutrients mentioned

magnesium..... http://www.whfoods.com/genpage.php?tnam ... #foodchart
potassium....... http://www.whfoods.com/genpage.php?dbid ... #foodchart
zinc.................http://www.whfoods.com/genpage.php?tnam ... #foodchart
vit B1..............http://www.whfoods.com/genpage.php?tnam ... #foodchart
vit b12............http://www.whfoods.com/genpage.php?tnam ... #foodchart
vit E................http://www.whfoods.com/genpage.php?tnam ... #foodchart

note the repeat 'usual suspects' - these are good ones to include frequently. with the dark leafy greens, raw isn't dense enough. usually boiled for 1-3 mins depending on which type, and drained. the rule of thumb for greens is three 1.5 c cooked servings per week. some favourite settings for this kind of serving size include spinakopita with side greek salad, salmon or chicken with sweet potato and greens (with a bit of butter and vinegar), or soups/sauces/chilis with plenty of cooked greens added (within reason). raw is okay just doesn't provide the same nutrient punch. a fairly typical spinach salad with hard boiled egg is another regular on the menu. for weekend breakfasts i often add a little thawed chopped frozen spinach to eggs.

hope something in all of that looks actionable! :)

some reading of possible interest - over the past year and a bit, z has been very good at getting tests done and acting on results:
introductions-f20/topic28969.html
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: Please help me cope with my symptoms

Postby Lostpuppy » Tue May 29, 2018 6:52 am

Thanks Jimmylegs
A lot of good info. I am eating fish a few times a week now. I will be making more of a conscious effort to add more of those food groups you mentioned.
The chart in the link about how much VitD3 to supplements vs current status was helpful.
I will be adding the vitamin Bs you mentioned helped you and are also in the Wahl protocol.
While some of my symptoms were less noticeable to me the past few days, I notice new twitching or tingling in different parts of my body that were not affected before.
Oh well. It’s a little depressing to me.
Thanks for your help
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Re: Please help me cope with my symptoms

Postby jimmylegs » Tue May 29, 2018 8:26 am

sounds great re increased dietary nutrient density :)

please do not omit at least a multivit/min on the supplement side.

i can't overstress the importance of cofactors. nutrients do not occur in isolation in nature. even human skin does not uniformly produce 25(OH)vit D3 in the absence of essential cofactors. piling in one essential (or a scant handful) from supplemental sources skews the natural distribution in your body. it's for this reason that synthetic vit e has been associated with increased cancer incidence. they loaded alpha tocopherol and ignored the other 7 parts of a natural E8 complex. prescribe yourself a quarter cup of sunflower seeds daily, and you're a good chunk of the way there already. there are no records of vit E issues from natural food sources.

more caution - in the early days i too placed strong emphasis on the b complex and b12 in particular. in hindsight it's entirely likely that vit E played at least an equal part in my total deficit scenario. vitamin E8 complex is readily available in event of a distaste for nutrient dense sunflower seeds :)

i also ignored to a large extent the entire mineral side of the equation, which was in hindsight very stupid of me. yes the amount of info coming at me was overwhelming, but if i could change one thing now it would be an earlier understanding of minerals as part of the overall nutrition package.

possibly of interest: for years i've been able to correlate my occasional 'jimmylegs' to a zinc deficit. which was just confirmed with recent lab testing. i've upped daily intake and the legs are settling down nicely. same with the recent tinnitus episodes.

if it's any consolation to me the best part of an ms diagnosis was the steep learning curve that followed immediately after and which continues to this day. all fascinating stuff.

one aside of possible interest: among the various protocols available, dr wahls and i share a vegetarian background (vegan in my case) so regimen similarities are likely to represent a roughly similar return path to equilibrium, taken from our individual nutritional pendulum swings.
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
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