New, Scared and Looking for Support

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New, Scared and Looking for Support

Postby lizzyc87 » Sun Sep 30, 2018 7:35 am

Hi Everyone,

I'm new here, thanks everyone for sharing your stories. I've been reading the forums and it helps to know I am not alone. I'm 31F but for the last 3 years I've been experiencing what I think are MS symptoms. back at the end of 2015 I started having this odd feeling of dizziness sort of like i was swaying or falling backwards if i was sitting in a chair, my head would feel heavy too, these would come and go and I was terrified. It wasn't aggravated by head movement or eye movements, I went to my doctor and ENT everything ok with my ears, my GP chalked it up to vitamin d deficiency and gave me some tablets. I continue to have those feelings up until this day except they don't come as often or as strong.

Back in august 2017, i woke up one day after heavy exercise with the left side (waist down) completely numb. I had complete use of my leg but the feeling was just not there, sensations were altered, lots of burning etc. I went to the ER where they did an mri thinking it was a herniated disc and told me my discs were okay, they gave me a short package of 6 days oral steroids to take, after having the numbness for about 12 days it went away just as mysteriously as it came. after that I was completely back to normal but then 2018 came. In february I woke up one day with both my legs and feet having weird sensations everything from odd burning, feeling like there were wet spots, random tingling in patches all over my legs, even butt and genitals. This would mostly be aggravated after walking i also had a lot of lower back pain so i thought it was related. I also experienced a slight numbness but not fully just the skin feels different and some times tight. this has been happening ever since but it has gotten better, the episodes dont happen as often, it is greatly reduced and its nowhere as consistent as it was before. my right hand also developed some more pronounced numbness and i get the same tingling and odd sensations in that arm since then BUT i had an mri of my neck and i do have three herniated discs slighlty pusing on the spinal cord so not sure if the hand/arm is from that or something else. Ive also noticed some of this weird tingling in my stomach and back area. All this time I've walked without issues and (knock on wood) no weakness in either hand or legs. Recently i have been getting pain in my right eye socket and my eye feels tired and random ticks(ive had this symptom before about two years ago) all this time there has been something telling me there may be something else going on and my gp has finally agreed.

She is sending me for a brain MRI this tuesday and my first neuro appointment is on the 10th of october and Im really scared. Part of me will be relieved to get a diagnosis as this is giving me terrible anxiety and i think is better to know than not to but what terrifies me is what is to come if its ms, since most of my symptoms are related to the sensations in my body I am worried I will lose my ability to walk and this makes me terrified. I know MS affects everyone different but do most people that experience numbness in legs, altered sensations etc mean they will be physically disabled? I am so scared. this has been an extremely stressful year for me as I separated from my husband (divorce to come), my beloved dog passed away, changed jobs and I'm for the first time facing life by my own.

There's been something nagging me and I'd like feedback on your experiences, all throughout this Ive had a lumbar MRI and a cervical mri, because they were issued with a herniated disc prognosis in mind, the reports didnt mention if there were any lesions, but would a radiologist report lesions regardless of the reason for the mri or would they need to be actively looking for these?

sorry for the long post, this is the first time i've shared my story. thanks in advanced to those who read and reply!
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Re: New, Scared and Looking for Support

Postby jimmylegs » Sun Sep 30, 2018 9:44 am

hi and welcome lizzy - you are by no means alone :)
i'm not a pro by any means but i suspect if lesions showed up you'd know about them, regardless of mri findings. if they didn't see anything that suggested adding a cranial mri that could be viewed as good news.
in the meantime there are lots of things you can do to optimize spinal health (i need to do far better in that department myself!) and overall health in general. ruling out any lifestyle contributions to your potential experiences of chronic illness is a great way to take control and be proactive, in parallel to other investigations. luckily there is a massive evidence base to support rational decision making for healthy living :D
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: New, Scared and Looking for Support

Postby lizzyc87 » Sun Sep 30, 2018 12:44 pm

jimmylegs wrote:hi and welcome lizzy - you are by no means alone :)
i'm not a pro by any means but i suspect if lesions showed up you'd know about them, regardless of mri findings. if they didn't see anything that suggested adding a cranial mri that could be viewed as good news.
in the meantime there are lots of things you can do to optimize spinal health (i need to do far better in that department myself!) and overall health in general. ruling out any lifestyle contributions to your potential experiences of chronic illness is a great way to take control and be proactive, in parallel to other investigations. luckily there is a massive evidence base to support rational decision making for healthy living :D


thank you Jimmylegs, any advice on diet or supplements to take? I wan to read as much as I can on lifestyle changes to improve my health. i know for sure i need to improve my sleeping as I usually only sleep 5 hours a day at most. sometimes Im afraid of exercising as I worry the muscle exhaustion etc can trigger a relapse or make some of my symptoms worse(completely unfounded but my mind comes up with all sorts of things!)Question for you and your experience do most people with RRMS experience complete relief of symptoms between relapses or is it common for some symptoms to linger in between albeit maybe not as pronounced?
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Re: New, Scared and Looking for Support

Postby ElliotB » Sun Sep 30, 2018 2:35 pm

There are many, many recommended MS diets and they ALL seem to work for some but not all. I follow a very unpopular diet and am doing extremely well on it. I am also gluten free.

As far as supplements go, there are many, many, many to choose from. I am a firm believer in taking them (I take a lot of them every day) as most of today's food are devoid of the nutrition they once had, were meant to have and the nutrition the human body needs for good health and to function properly - supplementation helps put things in balance.

There is a lot of info here on TIMS and on the web regarding both these topics.

As each case of MS is pretty much unique, what works best for 1 person may not work or work well for another. Exercise is typically good. 5 hours of sleep is probably not enough. You may find a short nap in the afternoon helpful. Elimination of all stress is probably a very good idea as well.

Try different things that appeal to you to see what makes the most sense to you and what works/works best for you.
Last edited by ElliotB on Mon Oct 01, 2018 3:40 am, edited 1 time in total.
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Re: New, Scared and Looking for Support

Postby jimmylegs » Sun Sep 30, 2018 3:13 pm

hi :) the easiest thing to do is a self assessment.
whatever nutritional bloodwork you have, regardless of whether it's 'normal', is worth a closer look than whatever the lab had to say. if you post anything along those lines we can comment on ones that are relevant and identify gaps in the list of tests done to date.

physical activity level is also worth some scrutiny. in my xp some people's activity levels are too much for their nutrient intakes.
more often including in my case, it's the reverse. i have a very specific food plan and i make a point of physical activity but it's not as good as it has been at other times and in other places. it's easy for me to overexert myself and it shows in transient lost functionality. i don't care - i'm still getting out there :D

last week i saw a great presentation on 'parks rx' ie parks prescription. the presenting doc described the process of interviewing the patient, allowing them to self-prescribe an improvement plan and a time frame for reassessment, and lastly the doc would do the associated record keeping.
described info gathering in a typical appointment went like this:
'what places close to home can/do you go for outdoor physical activity?'
'which of these can/do you visit and how often?'
'what would be a reasonable improvement to your current status quo?'
'how often would you like a reminder text?' and
'when do you want (within reason) to come back and review progress?'
and then with all this info programmed into an app, the patient heads off with their phone sending them the reminder at their requested frequency, to go do what they had said they could do. the app also has a button for the patient to press to report when they did it. so both doc and patient end up with a good record of how each prescription went, and of progress over time and ensuing prescriptions.
the presenting doc made the point that in the usual patient prescription setting patients do not get this level of ongoing support for adherence. (similarly the docs won't typically know if their patient adhered to prescribed treatment). he also said in some areas where park admission fees are in place, that park management agencies have agreed to allow free access to patients who show up with a legit parks prescription (not only provided they are connected to parkrx as an entity, but in some other jurisdictions/locations as well).

the other thing you can dig in on (ack now the pun is intended) is of course diet.
have any of your docs ever referred you to a preventive public health professional eg a registered dietitian?
do you have a copy of public health recommendations for diet and essential nutrients?
is there a printout of the harvard healthy eating plate on your fridge?
can you readily access recommended daily intakes of essential nutrients for your age and gender, via a file or link?
do you need to learn what those recommendations are and where you can find them?
do you have a sense of the most common nutrient issues?
those most commonly associated with chronic illness?
with ms in particular?
do you know how closely your day to day adheres or doesn't to existing evidence-based public health recommendations for dietary intake of foods and essential nutrients?
do you need to keep, or have you recently kept, a detailed diet diary of foods fluids supplements and meds? (if not, you can find a selection of diet diary templates online)
once you have thought about all of these questions, the first next steps on a list of action items will likely be obvious :)

as for 'ms diets', once you've done the self assessment you'll likely understand a direction you personally need to move to achieve balance and better health. it's quite likely that one ms diet will basically align with where you need to go. the back stories of the authors who generate the different diets all make sense, when viewed through the lens of a return to evidence based public health knowns about diet.
individual personal stories should not be given undue credit and what seems to be working for one may not work for another. time frames need close attention. i learned this lesson in spades. when a former roommate with familial high cholesterol had measurable short term benefits from a vegan regimen, i decided that what was good for him over a few months *must* be good for me (with no familial cholesterol issues) too, over decades. so, so incorrect. my on board nutrient stores let me get away with that stupidity for 15 years, before supplies were exhausted and the wheels came off.

for me i don't have complete remission. i did some permanent peripheral nerve damage and that is just that for me. i'm still classed relapsing remitting. it's easy to answer general questions about ms, but can be much tougher to apply them universally to all patients.
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: New, Scared and Looking for Support

Postby Scott1 » Mon Oct 01, 2018 12:09 am

Hi,

Right now, you don't have an MS diagnosis and you may not get one. Nonetheless, you are asking the right questions. What's been said about diet is right but I do think you need to look at some exercise and some manipulation for for the damage that's on your spine. A lot of problems can flow from bulging disks. You're better off taking some ownership of those issues than waiting for someone to say they can treat them surgically. Try a few good massages and some pilates style exercises. If the therapist treating you for massage finds some tight spots they can often deal with them or dry needling can also be tried.

No lesions is a good thing but even if they find a few it doesn't necessarily mean much. It certainly won't imply a wheelchair is just around the corner.

Have the tests done. It is the right thing to do. If you are having problems then knowledge is better than guessing.

I'm sure, no matter what the result is, you will get a chance to discuss what they find here.

Regards,
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Re: New, Scared and Looking for Support

Postby jimmylegs » Mon Oct 01, 2018 3:02 am

definitely agree re exercise. i had meant to note above that exercise delivers nutrients to the discs. related info:

Nutrition of the intervertebral disc.
https://www.ncbi.nlm.nih.gov/pubmed/15564919
The disc is avascular, and the disc cells depend on diffusion from blood vessels at the disc's margins to supply the nutrients essential for cellular activity and viability and to remove metabolic wastes such as lactic acid. The nutrient supply can fail due to changes in blood supply, sclerosis of the subchondral bone or endplate calcification, all of which can block transport from blood supply to the disc or due to changes in cellular demand.

Running exercise strengthens the intervertebral disc
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5396190/

The Effect of Sustained Compression on Oxygen Metabolic Transport in the Intervertebral Disc Decreases with Degenerative Changes
https://journals.plos.org/ploscompbiol/ ... bi.1002112

https://www.sciencedaily.com/releases/2 ... 180304.htm
Degenerative changes are believed to be linked to a failure in the transport of nutrients from the peripheral blood vessels to the discs, which affects solute concentration within the disc and depends on tissue composition and the disc's response to mechanical loads. Overloading can be damaging; however, normal loading allows healthy transportation of nutrients and solutes.
"It's essential for the healthy function of the spine that disc cells are provided with the nutrients necessary for tissue maintenance"
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: New, Scared and Looking for Support

Postby lizzyc87 » Tue Oct 09, 2018 4:12 pm

Thank you both for the really informative replies! As you both mentioned it’s time to take action on those things I do have control over like diet, exercise and better sleep regardless of a dx. I had my brain mri last week and my neurologist appt is tomorrow so we will see what comes from it. I will report back with any results
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Re: New, Scared and Looking for Support

Postby lizzyc87 » Thu Oct 11, 2018 3:34 pm

I wanted to update my post.. I have been officially diagnosed with MS.. wow it feels surreal to actually type that..they found multiple lesions in my brain. Part of me is relieved to know that what has been happening to me was not just in my head and that I can now start treatment and know to take care of myself better but obviously the other part is sad and scared. One thing I know absolutely that MS can’t take from me is how I think about this disease and I will be trying my hardest to show it that a positive attitude can go a long way.. I know it will take time to accept but there’s nothing else to do but to move forward now. I’d really appreciate any recommendations on books or articles to read to learn as much as I can. Thank you all
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Re: New, Scared and Looking for Support

Postby jimmylegs » Thu Oct 11, 2018 3:45 pm

welcome to the crappy club! i can't personally recommend any particular books, but i'm sure all kinds of others can and will :)
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: New, Scared and Looking for Support

Postby NHE » Thu Oct 11, 2018 5:50 pm

lizzyc87 wrote:I wanted to update my post.. I have been officially diagnosed with MS.. wow it feels surreal to actually type that..they found multiple lesions in my brain. Part of me is relieved to know that what has been happening to me was not just in my head and that I can now start treatment and know to take care of myself better but obviously the other part is sad and scared. One thing I know absolutely that MS can’t take from me is how I think about this disease and I will be trying my hardest to show it that a positive attitude can go a long way.. I know it will take time to accept but there’s nothing else to do but to move forward now. I’d really appreciate any recommendations on books or articles to read to learn as much as I can. Thank you all

I'm sorry to hear of your MS diagnosis. Regarding treatment, I suggest you investigate the various options thoroughly. Many MS neurologists have a tendency to hand their patients several glossy brochures on the available disease modifying drugs (DMDs) and then say to the patient "Here, pick a drug." almost like it was a card trick, e.g., "Pick a card, any card." The process can be overwhelming. There is research available that states that several of them, especially those known as the CRAB drugs, i.e., copaxone, rebif, avonex and betaseron, don't prevent long term progression of disability. For example, Dr. George Ebers' presentation. https://www.youtube.com/watch?v=OqY-_K1fYJY For some of the newer drugs, they just haven't been around long enough, 20 years or so, to have sufficient data available to know what their effects are on long term outcomes. Some of the DMDs can also put one at risk of life threatening side effects, such as progressive mulitfocal leukoencephalopathy (PML), which can be worse than MS. Also note that the DMDs aren't aimed at treating symptoms. Their goal is typically to reduce relapses. This sounds like a good thing, but as George Ebers points out, slowing long term progression of disability may be the more important outcome (though it's much more difficult to both measure and achieve).

Regarding books, have a look through the Reading Nook forum. reading-nook-f18/ There are several recommendations there. I happen to like Dr. Norman Doidge's books on neuroplasticity, but you'll have ample time to read a few and find your own favorites.
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Re: New, Scared and Looking for Support

Postby Scott1 » Thu Oct 11, 2018 9:17 pm

Hi,

Welcome to the club. You are going to get a lot of advice and much of it will be conflicting with other points of view. Compared to ideas on cancer treatments, the MS treatments will look like a cottage industry.

The best advice I ever got was on day one from the neurologist who diagnosed me. He was quite old and said "ideas on MS are like watching a pendulum: sometimes it swings far to the right and then moves far to the left, the truth is probably somewhere in the middle". I remembered that and it has helped me a lot. Whatever view is pushed at you is likely to be done quite forcibly. Always keep a skeptical view when someone is "selling" you an idea. You can try them but never forget to ask yourself "is this person helping me?" If it's not working then move on. Don't be a compliant patient (don't be a pain either).
There are plenty of points of view here and lots of real life experiences. You should just ask and see what comes back.

I've had MS for decades. I do have quite a few issues with tight muscles but I don't let it rule my life. Hopefully you will be able to also live with the same point of view.

What is often lacking in an MS discussion is just the story of what different people do about it. For that reason, I made a video about what I do about aspects of it and maybe this might be of use to you. https://www.youtube.com/watch?v=4lBkf3GVhEE&t=5s

Apologies if it is too soon but I get the impression that you are starting with the right attitude.

Regards,
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Re: New, Scared and Looking for Support

Postby ElliotB » Fri Oct 12, 2018 4:15 am

"recommendations on books or articles to read"

Read anything and everything and make decisions that make sense to you. I have read many, many books and do a lot of online reading and have adopted little bits and pieces from many of them. Scott's pendulum analogy is an excellent one. As is his entire post.

At this point in time there are probably 40+ 'cures', all seem to work for some but not all which to me speaks volumes. Again, adopt things that make sense to you. Trial and error to me is the best way to find out what may work best for you.


Some good news, the majority of those with MS have mild cases and do very, very well and a great attitude like you appear to have is a great starting point! Best of luck to you!!!
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Re: New, Scared and Looking for Support

Postby Zyklon » Fri Oct 12, 2018 10:22 am

You are in da club, welcome :)

My short story: Boosting mineral/vitamin levels, exercise in GYM, eating healthy, staying away from drama, research scientific things, keeping a mini blog on this forum.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: New, Scared and Looking for Support

Postby lizzyc87 » Sat Oct 13, 2018 6:08 am

Thank you all of you! I appreaciate everyone’s advice and while I know what works for some won’t work for others it’s good to learn a little about what each of you is doing for yourself. I guess this is a discovery journey for each of us. I’ve been reading a lot about medication and it’s overwhelming to make a decision but I guess everything is trial and error and see what I feel will be the right choice for me and go from there.
My dr wants me to get blood work done and a thoracic mri so we have a clear baseline of where we are at since I already had a cervical and mri that were normal in relation to MS. The blood work doesn’t include vitamin D so I will ask him to include it since from what i read so far this is a pretty important one. Any other vitamin or mineral worth testing? I know vit B, maybe magnesium as well?
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