MS is the only thing left

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

MS is the only thing left

Postby Uplate » Fri Apr 06, 2018 12:51 am

I've been seeing drs every few weeks for the past nine years after a stroke like event (not the first) left me unable to work or live a normal life. Nearest I can describe how I feel is like having a case of the bends after a bad dive. I would get it for a while in attacks and it would subside a few weeks to a couple of years later, this last time its going on 10years so permanent by the looks if it. This has been goibg on since 19yo after I had my first child, I'm 48 now.

I saw a very dismissive neuro originally who did a plain MRI, some bloods and an extremely painful nerve conduction study that I since find doesn't pick up small fiber neuropathy which my dr is certain I have. No LP, no contrast, no spinal MRI, no review at a later date, no second opinion. At that point everyone ruled out MS and we moved on to other specialties who unlike the neuro did a very though workup.

I've since seen a cardiologist who found orthostatic hypotension, swinging between tachy and bradycardia and an unusually low resting HR. Diagnosis benign arrhythmia, prescription propranolol

A rheumatologist ruled their speciality out saying I may have early AS because I do have some inflamation and bladder problems but there isn't enough evidence.

A blood specialist who reassured me I did not have lukemia and the sudden onset of drenching night sweats were not from that.

Menopause clinic then onto womens gyno, all clear.

Endo. I have idiopathic osteoporosis, but I already knew that, diagnosed at 32. Prescription vit D and weight bearing exercise

Urology ruled out IC with a cystoscopy, I saw their pelvic floor physio who diagnosed a pudendal nerve problem and gave me a diet and physio regimen but I still have excruciating bladder spasm, altered sensation, UTIs because I cant empty my bladder fully, leaking and sexual problems. Script ditropan and a referal for urodynamic studies.

Gastro ruled out coeliac, cancer and that other autoimmune thing I can't think of. Still have chronic bowel problems.

Psychiatric can't agree what the problem is and after years of looking I gave up and let them have at it, they succeeded in making me extremely unwell with no improvement whatsoever and I had to change drs to shake the reputation that gives you with drs so I could get back to the physical and medicine side of things. In the meantime I realized I couldn't relate to any of their patients or treatments, I just don't have the same symptoms. I was however able to tick off a lot of dual use meds used for pain I knew didn't work when I got to the pain clinic.

Saw a nephrologist for my Medullary sponge kidney and stones, its not from that, kidneys are good.

Seeing a sleep clinic because thats up the spout with circadian rythums and parasomnias and they have me in for a sleep study in a few weeks. They also want to rule out narcolepsy because I lose muscle tone and drop to the floor without warning but I doubt it will be that.

My GP just diagnosed me with migraine after having TMJ then sinusitis then a diagnosis of vestibular neuritis and then full blown migraine in quick sucession that seem to all be connected. Ive had visual symptoms for some time and saw an opthomologist who diagnosed bletharitis and dry eye, he doesn't know about me losing one of the glands on my lid margin yet or that I've developed double vision in the last few months. Optometrist suggested occular migraine. I have lost my peripheral vision and depth perception.

Also I have intense itching spells, scalp especially, only responds to periactin or sandomigran.

I have had several visits to emergency with increadible chest pain they diagnosed as chostochronditis, I no longer get the pain in my sternum, it's wrapped aroundctge back now like a corset, I get full fast when eating and get pain under my left rib, ultrasound says my gallbladder is fine.

I was told 9 years ago if it was MS Id have this this and this, I now have those and every new symptom I get leads back to MS even tge weird ones I never would have picked.

There's more but I think at this point we can say the neuro missed the diagnosis?
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Re: MS is the only thing left

Postby jimmylegs » Fri Apr 06, 2018 4:55 am

hi and welcome :)
any referrals to a pro dietitian in the history? public health pros can pick up gaps we're still in the habit of missing in the clinical care setting. a profound blind spot where 'subclinical' issues are concerned.
take control of your own health
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don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: MS is the only thing left

Postby Snoopy » Fri Apr 06, 2018 5:36 am

Hi,
You would need to see a Neurologist for testing to determine if you have MS or not.
There is a diagnostic criteria for MS. MS cannot be diagnosed based on symptoms alone.
https://www.nationalmssociety.org/Natio ... gnosis.pdf
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Re: MS is the only thing left

Postby ElliotB » Fri Apr 06, 2018 5:40 am

MS is often difficult to diagnose and unless you saw a neurologist that specializes in MS...

In any case, there are about 400 illnesses that mimic the symptoms of MS, so keep that in mind. Did you see more than 1 neurologist over the past number of years?

As you have been ill for many years, what are some of the things you have been doing for yourself with regard to your health (diet, supplements, exercise, etc.)?
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Re: MS is the only thing left

Postby Uplate » Fri Apr 06, 2018 7:20 am

I'm booked in to see a neuro but it's not till July. I've only seen the one neuro 8 years ago.

I've seen more than one dietitian and have done an allergy elimination diet through the hospital. Pre and probiotics. I have a few intollerances I've removed. I've also tried keto, low GI, fasting, intermittent fasting, low starch, clean eating and the given up on diets diet.

I eat well and do weight bearing exercise at the gym, I have always trained and eaten to train, I was a dancer for 15years. I don't smoke, drink or take drugs other than what's prescribed to me and the vitamins they told me to. I'm very careful with money and all my decissions are weighed. I have no social life, I'm too sick to socialize, I find it utterly exhausting and every time I've gone out it's set me back. I want to study and start my business up again but I'm too sick for that too, I have plans and not enough of me to get through the day let alone get that going. I pass the depression questionnaires and my dr says I'm not depressed.

I see an osteopath, over the years I've seen an Chinese herbalist, accupuncturist, had cupping and drunk that hiddious tincture you brew up at home, been through a lot of suppliments and natural herbal remedies and saw a hypnotherapist.

I'm getting a bit tired of being told it's not this or that, I can't access services or treatments without a diagnosis and I'm fighting like crazy to stop what's left of my life disintegrating, I'm one hiccup away from becoming destitute, again, because I do not function well enough physically to survive without assistance, no diagnosis no assistance. I'm ready to end it rather than end up homeless, in pain 24/7 and disabled for anyone to mistreat, I only just got a roof over my head after a natural disaster destroyed my home (the vultures were out after that let me tell you, had the police out twice with theives and predators posing as good Samaritans) and now I have to move again, I've just got over another UTI followed by a month long migraine where I couldnt leave the house, followed by a cystoscopy under general anasthetic, followed by a reaction to a migraine preventitive ending with having to withdraw from it suddenly which has really knocked me around, my gut hasn't been right since and everything I eat goes right through, I'm starting to drop weight again. I'm sinking fast and it's coming at me from every angle, there is no one to get me out of this, I need access to proper services and I need to be less sick, I've been through a lot over the years and I'm 100% certain I will not make it this time without that damned diagnosis, I'm in limbo while everything is falling apart around me.
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Re: MS is the only thing left

Postby jimmylegs » Fri Apr 06, 2018 8:56 am

ok perfect hopefully you'll have some useful data on hand

from any past bloodwork do you have any of the following on file and available for review:

serum vit b12
serum vit 25(OH)vit d3
serum magnesium
serum zinc
serum copper
serum ferritin
and
serum uric acid

from your work w dietitians and based on your level of activity, have you established your personal daily intake requirement for essential nutrients, eg to start for magnesium intake? if so how many mgs of magnesium do you personally target per day, what proportion is achieved via food, and which are your preferred dietary sources?

can you describe your usual essential nutrient supplement regimen? useful details would include essential nutrient dose per serving, pills/capsules/etc per serving if more than one, chemical form, combinations, timing, etc

it may not be news to you that the handful of essential nutrients listed above can be clustered around an 'MS average' within the normal range, or a 'healthy controls' average also within the normal range. looking forward to your input re the above!
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: MS is the only thing left

Postby Uplate » Fri Apr 06, 2018 7:57 pm

My levels were bang on normal at the last lot of tests, years ago electrolytes (potassium especially) had been low and things like D and albumin which spills into my urine with the medullary spongue kidney, but never B and never particularly low. It was a long time ago, I had symptoms when they were normal and didn't always become symptomatic when they weren't, throughout I have always had a bone crushing fatigue, the last time its escallated to where if I try to push through an afternoon all hell breaks loose (everything stops working from my autonomic nervous system with my HR, BP and temperature regulation to my muscles freezing where I can't move my legs, its like theyre choked up with fliud or something but they arent swollen, recently that's started in my hands where I'm dropping things because my grip will go at intermittent times (never in a drs office of course) and I've woken with the outside part (pinky and ring fingers) frozen in a claw on several occassions and no matter what I do I can't get my lat muscles sorted, no osteo, deep tissue massage, excercise or stretch can get rid of the pain around my ribs, I use a neoprene back strap around it like a corset, it's all that works, even the anti inflamatories aren't doing much). My levels came good when whatever caused it started to remit and I could eat again, which it did several times over 20years without diagnosis or treatment, went away as mysteriously as it came it's only been this last time I didn't get well and I feel like crap but all my blood work is normal. I've been over it multiple times with my endo and nephrologist, with the allergist at the diet clinic and with my dietitian, I was always "are you sure" they did have my tests in front of them and we did go over them and I did ask about subclinical. I walked out with take more D even though my levels are normal since it was in the more is better category and told not to go tampering with things as too much of some suppliments could make me sick, I had a vitamin B shot anyway and had an adverse reaction with swelling up, abdo pain and tight in the chest couldn't breathe and collapsed, it triggered my other symptoms to start playing up again so I leave it to the experts now. My sister has a eating disorder which is something I find quite frightening, I'm not going down that path so when it comes down to splitting hairs with diet I back off, I used to measure and weigh and keep charts, I don't do that anymore since I found out about her illness, I've been doing it long enough to know what the right amounts look like in a spoon, cup, handful or on a plate, what constitutes a good balance given my requirements for the week and I pre prep, it's as routine as brushing my teeth, the sports nutrition was over the top complicated at a certain point you have to say enough. The only reason I have to go back to my dietitian is if something changes or I decide to try veganism since I do have a problem with amines and they are difficult to avoid on animal product diets but apart from that all the advice they have given me over the years has panned out to be correct even when I've walked in armed with theories and paperwork and I'm very happy with the care they have given me.

It's not diet, kidneys or metabolism. My bloods respond they way they would be expected to when I'm unable to eat and have diarrhea which can go on for months during a flare up and bounces back as soon as I'm able to keep food in, I did ask if being sick like that was enough to put me where I am now (putting aside the fact that what made me sick hasn't been identified) and they have said not only don't any of my results reflect that, I wasnt malnourished enough in the first place nor for long enough (in spite of having lost 4 stone in 7 weeks on one occassion becoming so underweight I had to shop in the childrens clothing section because they didnt make sizes that small back then because everything I put in my stomach came out again pretty quickly). Because it has happened several times I'm prepared for it and suppliment through the duration with the same brand of multi, D and gastolyte they put me on and head up the drs for bloods to make adjustments and get a check up, I also used to budget and put money aside for the next time knowing it would happen again, this is how long I've been living with it and how routine coping with it has become. I also take extra magnesium because I get painful muscle cramps, numbness and tingling and restless legs even though I eat plenty of nuts, leafy greens and fresh produce in general, I cook my own meals as instructed, I don't eat out, likely they will tell me to stop the magnesium in case it's making the diarrhea worse (even though it's never bothered me prior and has never worked for me as a laxative when I needed one either), the symptoms I'm taking it for haven't improved (although my PMS has, ie cravings, sore breasts, so worth staying on it just for that). I doubt very much the drs would have missed anything subclinical in that respect, I've had decades of ongoing care with diet, endo and kidneys across multiple drs, I don't see any holes there and I'm satisfied my diet is neither the culprit nor the solution, I've got about as much improvement and management as I'm likely to get from the diet angle, I've hit the diminshed returns mark many times, I need to look elsewhere.

I'm familiar with the diagnostic criteria for MS and that is where I do see holes in the workup, neuro is the only specialty with enough pointing to it I haven't had a second opinion on or regular care with. Most of those tests have not been done and the only MRI I've had was nearly 10 years ago, no contrast, I was having an attack when I had it done having had a near complete remission years before from the all the prior attacks to go straight back to work as a dancer with the same healthy lifestyle some MS patients have reversal of their MRI spots with. He wasnt an MS specialist he was a general neuro looking for stroke, MS was a routine rule out, for all I know it may not have even been the correct set up on the MRI. It may not be common for a diganosis to be missed that way but it's also uncommon for someone to have had such extensive work ups done over decades, the last decade disabled by it and not be diagnosed with something, rare does not mean non existent. What is common though is for neuros who aren't MS specialists to miss the diagnosis, especially if it's a token no based off of tests looking for something else. He can't have been looking for it since he never did a LP or evoked potentials (which I would fail, I actively avoid patterns flashing lights etc because they make me nauseated, headachey and induce a kind of weird aura sensation with deja vu, alice in wonderland syndrome, loss of coordination and orientation and my stomach drops moments after being exposed to it) which is why I think it's been missed. Not to mention the drs attitude, he really could not have been bothered.

I'm past the point of "I'll try anything", I blew so much money on alternative treatments even before this last round (the fatigue never did go away) I probably could have bought a house with how much I've spent over the years on alternative drs and suppliments it got me nowhere but poorer. The only things that have worked have been the sports medicine tricks but half those I can't do anymore, contrast showers used to help but cold now makes my muscles tighten if not in painful spasms then stiff where I can't move and heat is ok topically too but if it's enough to raise my core body temprature even a little it's like I have a fever with all the associated pain and malease, as it is I take panadol for idiopathic low grade fevers that send me into a spiral and they never find anything when it's investigated.
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Re: MS is the only thing left

Postby jimmylegs » Fri Apr 06, 2018 10:47 pm

only specific numbers provide actionable info. note that potassium is not one of the red flags where ms is concerned. which results from the 7 items listed here might you have on file, even if from old tests?

serum vit b12
serum vit 25(OH)vit d3
serum magnesium (especially, given the muscle issues - seriously you don't have this level?!!!??)
serum zinc
serum copper
serum ferritin
and
serum uric acid

if you have the number and units for all 7 items you'll be in great shape for next steps. answers re the daily magnesium targets and food sources questions above would help too. if no one has brought this to your attention given your muscle issues, shame on them.

symptoms will not necessarily be in the mix. right now i'm coming out of a busy year in which i neglected a few things and didn't feel it the whole time. (until the wheels came off last month). from available results (a year old) i have work to do on d3 and zinc.

my zinc status is already 'normal'. 12 umol/l. i'm aiming for 18.

local lab range: 7.7-14. at 12 i'm already 'upper normal' according to their numbers. but i'm 'ms normal' according to research. when i get the levels i want, the local lab's system will red flag 'zinc excess'. the 'healthy controls' in the literature would also be in zinc excess according to this neighbourhood lab's range.

local hospital range: 11.5-18.5. ah, now that 'ms normal' of 12 doesn't look so good and my 'healthy controls normal' objective of 18 fits neatly within the top end of the normal range - just where i want it.

my d3 has 20 units to go to get into the bottom end of the 'normal' range. again, just normal is not good enough. once my d3 is 65 units higher i'll be satisfied, and not before.

this past month has taught me that the changes i made since dx, although drastic, are no substitute for proper vigilance where relevant essential nutrients are concerned.
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: MS is the only thing left

Postby Kittie » Sat Apr 07, 2018 2:10 am

I so sympathise with you. I have had MS for over 40 years and have searched and searched for something 'natural' that could help me. I kept to good diets and had an electronic machine that I still use on my bad leg. My MS started from my right ankle and progressed up the right side and down my left. Neurologists only offer drugs and I haven't met many people that they help. If anything it makes them really ill.

I found Dr Coimbra in Brazil who has been treating people with MS for nearly 20 years and having brilliant results on D3, magnesium and lot of vitamins. I am getting feeling and movement back into my body again. It is a slow process and takes time, but no drugs!!! You need a protocol doctor to see you through this and I recommend Michael Cawley who lives in Ireland. There is an initial cost which isn't a lot for what you get in after care service. He can see you personally or he uses Skype which I have found fine. You also keep in touch by email or phone. He also has got MS but his has been stopped and his immune system is no longer attacking itself. Michael is classed as a Doctor under the protocol as he has been trained by Dr. Coimbra himself. He is a nutritionalist and accupuncturist and has been for many years. You can follow my journey with the D3 protocol on this site. I am doing this so that people can see if it really works.

Best of luck and contact me if you need any more information and I will try and help.

Kittie.
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Re: MS is the only thing left

Postby jimmylegs » Sat Apr 07, 2018 11:01 am

tmj, psych and migraines oh my

Serum Nutrient Deficiencies in the Patient with Complex Temporomandibular Joint Problems (2008)
https://www.tandfonline.com/doi/pdf/10. ... ccess=true
This study evaluated serum nutrients in 23 patients who had previous Proplast/Teflon implants to their temporomandibular joints (TMJ) and continued to remain in chronic, severe, irresolvable pain despite subsequent surgical reconstruction. All of the patients were women, and their average age was 40.6 years (range, 28–55 years). Standard blood assays were performed for beta-carotene (vitamin A), folate, serum iron, ferritin, zinc, magnesium, and vitamins B1, B6, B12, and C. Each patient was deficient in at least one of these 10 elements, with an average of 3.3 elements. Some factors that may be responsible for the deficiency state include inadequate nutritional intake, malabsorption, utilization dysfunction, increased requirements, or drug interactions. In conclusion, the patient who has had multiple, complex TMJ operations with a history of TMJ Proplast/Teflon implants and poor treatment results may be suffering from an unrecognized malnutrition state, substantially adding to the patient's morbidity. Nutritional evaluations, dietary counseling, and appropriate medical management may improve the treatment outcomes for these patients.

in this study they have not clarified the ranges used to define low, normal and high for each nutrient studied. they have however noted "Nutritional deficiencies can occur in 30% to 40% of the normal population."


Nutritional medicine as mainstream in psychiatry
http://www.sciencedirect.com/science/ar ... 6614000510

( reposted from mental-spiritual-health-f19/topic29540.html#p250366 )

Psychiatry is at an important juncture, with the current pharmacologically focused model having achieved modest benefits in addressing the burden of poor mental health worldwide. Although the determinants of mental health are complex, the emerging and compelling evidence for nutrition as a crucial factor in the high prevalence and incidence of mental disorders suggests that diet is as important to psychiatry as it is to cardiology, endocrinology, and gastroenterology. Evidence is steadily growing for the relation between dietary quality (and potential nutritional deficiencies) and mental health, and for the select use of nutrient-based supplements to address deficiencies, or as monotherapies or augmentation therapies. We present a viewpoint from an international collaboration of academics (members of the International Society for Nutritional Psychiatry Research), in which we provide a context and overview of the current evidence in this emerging field of research, and discuss the future direction. We advocate recognition of diet and nutrition as central determinants of both physical and mental health.


Short Communication - Blood Magnesium levels in migraineurs within and between the headache attacks: A case control study
https://www.ajol.info/index.php/pamj/article/view/81999

"Abstract
Introduction: Some probable mechanisms have been described to the relationship between magnesium (Mg) level and migraine headache attacks. In the study reported here, we sought to determine the total Mg serum status of patients with migraine within and between the headache attacks and compare it with non-migraineurs.
Methods: This study was performed on 50 migraineurs patients diagnosed according to the International Headache Society (IHS) criteria for acute migraine headache. Fifty healthy subjects without any family history or evidences of migraine were randomly selected from hospital personnel as the control group. Serum Mg level was measured by Xylidyl blue method.
Results: In the group with migraine headache, no significant difference was found in the serum total Mg levels within and between migraine headache attacks (1.86 ± 0.41 mg/dl versus 1.95 ± 0.35 mg/dl, p = 0.224). But, serum total Mg level was notably lower in the group with these attacks compared to the control group (1.86 ± 0.41 mg/dl versus 2.10 ± 0.23 mg/dl, p < 0.001).
Conclusion: Serum Mg level is on average significantly reduced in patients with migraine compared to the healthy group. However, the serum total Mg levels in migraineurs remained constant within and between migraine headache attacks."

of note in this last abstract all groups's levels are 'normal' throughout. in general serum mag 'normal' is 1.5-2.5 mg/dl. meanwhile none of the groups' levels are optimal - even those without migraine issues.

optimal levels to exclude concurrent magnesium deficit symptoms are more like 2.3-2.7 mg/dl. ie half of the optimal range is outside the top end of 'normal'. i wouldn't disregard the drop seen in the group with migraine relative to those between migraines either.
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: MS is the only thing left

Postby jimmylegs » Sat Apr 07, 2018 3:22 pm

from general-discussion-f1/topic29623.html#p250933
zen2010 wrote:Dear All,
Do you know any tip to decrease leg stiffness?
I mean, except taking Magnesium and doing exercise.
Thks
jimmylegs wrote:interesting (if annoying), you have high serum mag and leg stiffness??
... long story yadda yadda then ...
zen2010 wrote:
jimmylegs wrote: lower quality forms of mag such as mag oxide; good for laxative purposes, not so much for absorption into tissue. ideally, find some magnesium glycinate or similar

Hi,

It's incredible
Right after this message, I went to my pharmacy.

Funny story, the pharmacist told me exactly the same thing: "Mag Oxide is good for laxative purposes. If you aim for good absorbtion, you'd better switch to Mg Glycinate".

So I bought bisglycinate from Solgar, and only after 2 days: results are great.

Not only stiffness vanished, but globally, I feel much better.
I hope these results will last more than 2 days.

Jimmylegs, I owe you one...


jus sayin ;)
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: MS is the only thing left

Postby Scott1 » Mon Apr 09, 2018 1:18 am

Hi,

I do feel for you and can identify with some of the muscle tightness issues. You deserve to be investigated by MRI no matter what the outcome.

Jimmylegs asked for the serum uric acid level and that could be a really useful clue. If it's low it will be pointing to a problem metabolising purines correctly. It won't surprise me if it is low. The fatigue would be consistent with that.

The magnesium idea can help but you might need the same stuff that I am on - Dantrium. It will definitely relieve the tight muscles and cramps but you will need to be prepared to undertake some exercise that aims to strengthen muscles when they are in an elongated state. Happy to guide you through that but don't try Dantrium if you won't try the exercise. The initial affect is you feel very weak. All that's happened is the muscles have finally released and you're not used to it. A bit like an astronaut who returns to Earth after a long orbit. The muscles have to readjust. Only a neurologist is likely to prescribe Dantrium and it should be the minimum dose, no higher.

For whatever it's worth, a fasting amino acid panel might show, in great detail, if there are any nutritional deficiences. They can arise for a number of reason not just because of diet.

Regards,
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