Pain & Inflammation issues

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

Pain & Inflammation issues

Postby elaine747 » Fri Oct 05, 2018 5:27 am

Hi, My son is 30. He had some bloodwork done and the primary sent him to a rheumatologist. The rheumatologist didn't seem to think the blood work revealed he could help my son. So, he went back to the primary. He has an MRI scheduled next week, only because I asked the primary if he might need to see a neurologist. I am surprised at how doctors seem so lax about getting to the bottom of what's causing a patient's problems. He has had issues off and on for several years. Went to doctors who prescribed him stuff for various issues. I recall one time he had numbness in his face and they thought it was sinus. He is complaining about pain in his body and numbness in different areas and he mentions having inflammation in areas of his body and his head. He says he feels like his life is over and he wishes he had a new body. I don't know what to think but it's tough to hear him talk like this and I can't do anything for him. I'm trying to hold it together but it's doing a number on my mental state. Not sure even what to ask but if they find it's MS, do they try to get him on meds? Or do they treat the inflammation with something like steroids? Or would the MS meds help the inflammation? His primary did give him some type of anti-inflammatory med but he said it didn't help. He doesn't have insurance or a job right now and neither do we. So, I'm hoping if he needs to do medication, there's a way we can get it through some program or something. We hope to find a way to get him some insurance in November. I am so down. I just want to help him and find something to make him better. I want to feel hopeful but I'm so concerned. Thanks.
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Re: Pain & Inflammation issues

Postby jimmylegs » Fri Oct 05, 2018 6:04 am

hi and welcome :)
which tests were run and what were the detailed results, if we may ask?
have there been any referrals to preventive health professionals? eg registered professional dietitian?
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Re: Pain & Inflammation issues

Postby ElliotB » Fri Oct 05, 2018 7:39 am

Sorry to hear your son is ill.

Most drugs have serious side effects and don't necessarily do a good job on the issues you mention. Have you considered diet and nutritional supplements? Is your son able to exercise?


"I am surprised at how doctors seem so lax about getting to the bottom of what's causing a patient's problems"

Sometimes they just don't know what to do and often even when they can correctly identify an issue, for these types of issues, there is often little they can actually do to help unfortunately.
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Re: Pain & Inflammation issues

Postby elaine747 » Fri Oct 05, 2018 8:55 am

I read Terry Wahl's book and I'm actually trying to cook the right foods for the last 6 weeks or more. He's been trying to do an anti-inflammatory diet as well. There is so much information on this site, which is nice. But a lot of stuff to read here! Your comment about side effects...I guess I get confused about all this stuff. So, what do people do? Try a medication or two and if they have bad side effects, then just do the best they can without meds? I'm assuming there are other medications they take for various symptoms of the disease like steroids or pain medications, etc.. But it all sounds complicated! I had hoped for something that would help him feel better and get better in some respects. I do see comments where people say meds help them. I noticed where someone suggested a Functional Medicine doctor. Wondering if that can help someone's quality of life with MS?
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Re: Pain & Inflammation issues

Postby jimmylegs » Fri Oct 05, 2018 9:58 am

hi and welcome :)
which tests were run and what were the detailed results, if we may ask?
have there been any referrals to preventive health professionals? eg registered professional dietitian?
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: Pain & Inflammation issues

Postby elaine747 » Fri Oct 05, 2018 11:10 am

I'm so new to all this stuff...I think it was a test of sjogrens, rheumatoid arthritis, lupus, and lipid panel for triglycerides, etc. Complete metabolic panel, erythocyte sedemention rates which show such things as hemoglobin, platelet count, etc. and all was said to be normal except for, I believe, an ANA test but the rheumatologist didn't seem to think it was anything of concern. He's going for an MRI next week. Then a neuro appointment in November. Wish I could feel more positive on this front but have no idea what to expect at this point. :/ I know he's kind of frustrated. I wish it could be me and not my son going through this. I just hope there's something available to help him.
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Re: Pain & Inflammation issues

Postby jimmylegs » Fri Oct 05, 2018 11:19 am

hi there it's a learning curve for sure!
i mean specifics like: was serum vitamin d3 done, if so which metabolite(s), what units did the results come in, if vit d3 and results in nmol/l were the results in the 70s 80s range or in the 120s range, yadda yadda yadda.
was serum b12 or a b12 panel done. if so, what units. if pmol/l, was the result above or below 370 (with normal cutting off down at 180 or 200)
that kind of stuff :)
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: Pain & Inflammation issues

Postby jimmylegs » Fri Oct 05, 2018 11:20 am

hemoglobin details would be an ok start. i need to refresh my memory re all components of the CMP.
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: Pain & Inflammation issues

Postby ElliotB » Fri Oct 05, 2018 11:43 am

" So, what do people do? Try a medication or two and if they have bad side effects, then just do the best they can without meds?"

I cannot speak for others. Most people rely on medications. And there are many who find relief with medications. I have tried numerous medications. None have helped. The side effects were also an issue for me.

I have had no choice but to do things on my own. Through diet, exercise, supplements and lifestyle changes, I do the best I can and possible. While I am not pain free, my pain level is the lowest it has been in a long time (years) and it keeps improving. My MS seems to be under control. I follow a diet thought to reduce/limit inflammation and take many, many supplements also thought to do the same. I have and continue to keep doing research on natural remedies on a daily basis, and keep trying different new supplements, other protocols and keep researching more and more on an almost daily basis in the hope I can improve even more. I have spent many, many hours per week every week for the past 5+ years doing so since my MS diagnosis. I have discovered that since most modern foods lack the nutrition they once had and are meant to have and also suffer from unwanted attributes due to a number of reasons, I take many supplements to help make up for these nutritional issues. I take around 40 supplements a day, have been for years and in the past few weeks alone, have added a few new ones and stopped taking a couple that I had taken for years. I adjust my supplement intake on a regular basis.

If your son is able to experiment with modern medications and find one that works for him, that would be ideal. If not, there are other options. Good luck!
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Re: Pain & Inflammation issues

Postby elaine747 » Fri Oct 05, 2018 11:57 am

Hmm...so not sure how to respond to individuals~perhaps it only lets you respond once at the bottom of the page. Jimmylegs~As far as Vitamin D or B levels, etc. I didn't see anything on that bloodwork to indicate those things. But I have been meaning to ask my son if they did check them as I've been curious myself on that.

ElliotB~Sounds like you're doing well taking that many supplements. My son takes some supplements but not near that amount. I've heard of people using Functional Medicine doctors. I think there is one within range of us. Wonder if that would be a good idea to check out. It would be nice to have someone give you advice on exactly what to take. There are so many things out there. I hope we figure this all out somehow :)
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Re: Pain & Inflammation issues

Postby jimmylegs » Fri Oct 05, 2018 2:15 pm

ok how about hemoglobin then?

re cmp calcium, sodium and potassium info wouldn't hurt https://labtestsonline.org/tests/compre ... -panel-cmp

if you can find serum ferritin that's worth knowing

expected in the context of ms investigations: serum vit d3 and serum b12 as mentioned above.

atypical but useful: serum magnesium. serum zinc. serum copper.

nice to know but not need to know: serum uric acid.

there are more options, but no sense digging deeper until you have at least some of the above :)

re your implementation of wahls protocol i am curious if it aligns with your son's back story. has he been vegetarian long term?
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: Pain & Inflammation issues

Postby NHE » Fri Oct 05, 2018 10:01 pm

elaine747 wrote:I'm so new to all this stuff...I think it was a test of sjogrens, rheumatoid arthritis, lupus, and lipid panel for triglycerides, etc. Complete metabolic panel, erythocyte sedemention rates which show such things as hemoglobin, platelet count, etc. and all was said to be normal except for, I believe, an ANA test but the rheumatologist didn't seem to think it was anything of concern. He's going for an MRI next week. Then a neuro appointment in November. Wish I could feel more positive on this front but have no idea what to expect at this point. :/ I know he's kind of frustrated. I wish it could be me and not my son going through this. I just hope there's something available to help him.

Welcome to ThisIsMS Elaine. The first step is to go through the diagnosis procedures. Maybe your son has MS, maybe he doesn't. Once you're confident with the diagnosis, he can go forward from there. That said, there are many things one can do in the meantime as the other forum members have suggested. Though, it's probably a bit early on at this point to be thinking about specific drugs. Oh, one member, Scott1, has done very well with pilates exercise. You may wish to read some of his posts. He has youtube videos as well.
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Re: Pain & Inflammation issues

Postby elaine747 » Sat Oct 06, 2018 6:14 am

Jimmylegs~I didn't see anything with the word serum and no ferritin, copper, etc.
Hemoglobin 16.3=Range 13.4-17.0 qm/dl, Calcium 8.5-10.0 mg/dl, sodium 136-145 mEq/l, potassium 3.5-5.1 mEq/l
It would be nice to check on his Vit D, B and a few others. Is that best to go through a primary Dr for that?
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Re: Pain & Inflammation issues

Postby elaine747 » Sat Oct 06, 2018 6:33 am

NHE..Not sure what you mean by it's too early to think of drugs. Do you mean he should think it all through before he considers them? I know he says he has pain and inflammation. I think my son has had some issues off and on for maybe ten years. But several things were attributed to other things. Like pins and needles and numbness in face being sinus or going to the ER with palpitations and being lightheaded and they thought it was that he came off a certain medicine too quickly. Shoulder pain that he thought was from an accident. And just things here and there that doctors just hand a prescription and think all is fine. He was to the point he didn't have much faith in doctors.

I'd like to think there was a med that would help him. But I can't deny that reading some of the side effects of those meds does concern me. I guess he'll have to get the MRI and go from there. Wish this was going on during a better time back when we all had insurance. It's just been a really bad year financially. Maybe there's hope :/

Jimmylegs I think you had asked about my son's diet. He has never been into the fast food stuff too much except for a Chick fil a on occasion. But he did eat things like shredded wheat, raisin bran, milk, eggs, and a few other things he's since given up the last two months or more. So, he's good with being on a diet. He has decided to stop the fruit the last two days. Maybe he's trying to eliminate all sugar for a spell.
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Re: Pain & Inflammation issues

Postby jimmylegs » Sat Oct 06, 2018 8:21 am

hi again

where hemoglobin is mentioned in the context of ms it recommends at least 13 so your son's level looks good for that one :) suggests that ferritin is also ok.
for the other electrolytes i'm seeing ranges but not results correct?

for other tests yes see if the doc will do you up a requisition and if not, then depending where you are there are a variety of private options. states are good with all kinds of online choices, UK's super expensive from what i've seen, canada's a bit of a pain. eg in ontario if the doc will order it for you, great - but the govt won't pay for d3 test any more. (they will cover other less popular tests - ie ones that cost the govt less $$$ - including b12).

re diet i'm not a fan of elimination approaches personally, since it was overdoing food elimination that got me into trouble in the first place!
i've always considered 'avoiding potential allergens' as pandering to vs building up a weak immune system. we know which nutrients are needed to support a healthy immune system, and you don't get them by not consuming (whole) foods.
it's worth evaluating status quo diet for adherence to nutritional requirements, and making improvements as needed to overall dietary diversity, and whole food nutrient density.
the other handy consideration is whether foods are pro or anti inflammatory. that is by no means an instruction to avoid all pro inflammatory foods. in the case of whole foods, these will often will have their own important nutritional benefits. with these it's a matter of balance. making sure more of each day's total intake is anti-inflammatory vs not.
fruit is an important part of a healthy mix, but it's pretty easy to overdo pro-inflammatory fruits. i work them into my daily routine via a berry and cherry mix which is specifically balanced for pro and anti inflammatory ingredients. basically breaks down as some sweet (pro-inflammatory), some tart (anti inflammatory).
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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