Please Help

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

Please Help

Postby essence » Wed Jun 19, 2013 12:01 am

Hey, Will try be brief. but please help me! im scared! thanks in advance!

had psychiatric problems for 2 years regarding depression, and anxiety and the 2 triggering one another, was cycled through anti-depressants for 2 years, being on easily 10-15 different psychiatric meds, usually about 5 at any given time, i was over medicated, and quit all meds in january against the advise of 3 psychiatrists..

I was miss-diagnosed as bi-polar in the mental health unit...
stopped all psychiatric meds in early January of 2013 and since then have had no issues really with depression
or anxiety, so this is NOT a psychiatric post, I'm completely mentally stable and have been for 6 months since i stopped the psychiatric meds..


~TO THE POINT~

turned 25 in early April of this year
and coincidentally distinguishable symptoms started around same time - March 28th was first noticed

what started off as numbness, tingling and loss of feeling in 4 toes on left foot while working a 50 hour week, I thought maybe i just stood funny that day working house renovation - drywalling, painting, demo, ect.

took 4 days off naturally as I had a long holiday weekend on march 28th this year, things seemed better went back to work a couple of days, and boom by 2nd day couldnt work again as it felt real weird standing on my left foot, and the shooting nerve pains were unbearable.

approx 1 week later, similar pains noted in right foot, now whole feet feeling funny, balls of feet losing feeling, toes tingling, feet feel like on fire on and off for a couple of weeks, in and out of hospital, seeing different doctors including GP.

toward the end of these couple of weeks the pain spread up into my legs, and my leg muscles felt very tight, sore, weird shooting nerve pains down sides of body ect. nerve pains occasionally below kneecaps and elbow caps... it started in my right leg, then moved to left leg a few days later..

the pain leaving me hardly able to walk still having the feet nerve pains at this point, this went on for the first 5 weeks. the pain was below waist 95% of time...

went to see GP on may 2nd, she prescribed me oxycodone 5mg for pain, and zopiclone for sleep
this same night i was up till 3am then tried getting to sleep, i had only had 3 hours sleep each night the 3 previous nights before may 2nd evening, this night, i went to bed at 3.00am

at 3.18am i started shaking uncontrollably for 6 minutes straight, it started above my ankles in each leg, and slowly moved up my entire body upto the top of my head within 15-25 seconds. I was concious the whole time, was SCARY, had blurred vision, felt dizzy but remained concious. had 2 more of these spread out 10 mins apart after the first one, but less intense each time - went to hospital they did nothing,

the whole right side seemed to be more effected then left after this..
but the complete tightness in my legs had disappeared with the shaking, my brain hurt a bit, and my nerves in my feet especially right side felt RAW like completley raw just messed up.

took me a couple of days to re-learn walking after this as my right side of my body lagged behind my left, or the opposite, hard to remember... since then this shaking has only happened once since, and it was REALLY minor



GP recommended I see an acupuncturist, went 5 sessions over 3 weeks, as after the first session the pain spread into my back.. stopped seeing the acupuncturist, as I often can never sleep at night due to pain and fatigue wondering what is going on with me, missed one morning appointment and thought this isn't for me, i was getting no relief..

its now june 19th, nearly 3 months since first symptom.. the feet arent as problematic anymore..

my legs are constantly sore.. my right or left leg clicks when i walk up stairs, cant figure out which one..

my back is toast...

the past 2 weeks i now get similar nerve pains in my fingers similar to the ones i had in my toes, started with right hand,

moved to left...

arms and shoulders often feel sore and weak


pain can be anywhere and every where..

migraines, and headaches, started just over 2 weeks ago, migraines i've had 2 real serious ones, and several mild-moderate headaches...

no energy - i work 3 hours going easy at my own pace on my property trying to do things like cut grass. Im dead the entire next day - drained cant do a thing.

the last 2-3 weeks, my bladder capacity has diminished, and if i do get more then 3 hours sleep at a time which never happens anymore. I wet the bed..

i havent been experiencing the "shooting" nerve pain nearly as frequent the past few weeks, but the pain overall is still really unmanageable even with oxycodone 5mg x2 cant sleep due to pain

this whole time i've not been getting adequate pain meds, my GP doesnt believe in oxycodone and its the only thing thats been working for pain SLIGHTLY she prescribed once - 20 pills, and after that said No More and i had hospital emerge doc pprescribe me emergency script on monday of this week of 10 percs same strength 5mg oxycodone..

ive seen an neurologist twice

he did nerve and muscle conduction tests, all results were normal

he did evoked potentials test - all results were normal.. he said there is Nothing to worry about and im fine! hahahaha what a JOKE!

waiting on an MRI for july 17th it seems years away even though its just a month away..

I experience clumsiness, lack of coordination sometimes

2 weeks ago was cutting grass at my house for 15-20 mins when i got dizzy and lost balance and fell over

I feel weak in arms and legs and back

Memory is awful, thoughts scattered sometimes

Thinking can often hurt

Have had vision problems here and there - had eyes tested 10 months ago had 20/20 vision



the thing is - i have all the symptoms of MS

after extensive blood work which all has come back great!, not diabetic, not lime disease, not vitamin deficient, ect...

my GP says i have all the symptoms of MS

except she says I shouldnt be in pain around the clock?


my pain floats, i never get a break from it, and its bringing back anxiety and depression problems (from being in pain 24 hours a day and not knowing why, no other reason)

june 18th, (yesterday) my GP prescribed me cymbalta for the nerve pain. 30 mg first week
2nd week bumps up to 60 mg

i have been refusing to take anti-depressants for pain because of the horrible experience i had for 2 years.... 4 months prior to all of this... but now i have little choice

as i cant cope with the pain, i opted to take the cymbalta, and tramacet for breakthrough pain

i have break through pains as well sorry for not mentioning

break through pains can last from 3 hours to a couple of days.. these are periods of time wear pain is more severe than usual


why am in pain? is this normal in early stages of MS? do others have pain problems?


im 25 years old and feel 85, use to be able to work 10 hour days no problem, skateboarded competitively for 10 years, always been healthy and very active...

now i cant even golf or do anything i like, or work or hold down a job...
walking is still painful, everything is painful

laying down is painful

any help would be greatly appreciated

i'm truly scared as i dont know what is going on with me

as i said i've read about early symptoms of MS on WebMD

and i have EVERY single one of them


any help would be greatly appreciated thanks in advance!!

man im scared :(

please help me..

any other questions feel free to ask its now 4am and i only slept 3 hours tonight so im not sure if i left anything out

oh yeah that's it pain can seem worse at night, symptoms can feel worse at night, but i think its because i know of how this is affecting my sleep so its discouraging me, not sure. and some times i have to urinate like every 20-45 minutes

THANKS IN ADVANCE
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Re: Please Help

Postby jimmylegs » Wed Jun 19, 2013 12:54 am

I am in a hurry so can only ask briefly, do you have the details of your vitamin tests? including names of tests, and actual results with units?
'normal' generally includes both sick and healthy people. 'deficient' is often very poorly defined.
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Re: Please Help

Postby essence » Wed Jun 19, 2013 1:53 am

sorry my apologies... all blood tests came back "Normal", im not sure what the names of the tests are or the results with units, i've never been given any records, i guess my GP would have them, but they are blood tests for different things, vitamin levels have been checked, and identified as "Normal" i have had blood work done 5 or 6 times now checking for different things including diabetes, everything has come back "Normal" or "Good"

nerve pain is back in feet again, they feel numb, especially the toes too as of this morning how strange, maybe its because the oxycodone i finally got took a lot of the pain away in my back so i can actually feel it in my feet again, i have no clue
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Re: Please Help

Postby lyndacarol » Wed Jun 19, 2013 4:54 pm

Welcome to ThisIsMS, essence. To answer your request for "any help," I offer you my standard action plan recommendation:

First, you may not have MS at all, but there is a possibility; it is an exclusionary diagnosis - made by ruling out other possibilities, as you may know. Very often, it is not easy or quick to diagnose. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. I had "normal" test results initially (lesions were seen on my FOURTH MRI and the diagnosis was made then). IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS - my personal suspicion is that excess insulin (and resulting insulin resistance) is responsible for many MS (or "neurological") symptoms.

Second, I hope that your doctor is a GP you have confidence in, that she is compassionate and enjoys being a "disease detective." I am not sure that a neurologist will consider ordering the following blood tests. I tend to believe that if you see a surgeon about a problem, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I just read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize." Your GP may have already ordered the following tests necessary to rule out some possibilities. Start at the beginning with your symptoms list and with a thorough physical baseline examination including blood tests for your (#1) cortisol level, which can be elevated with stress and cause blood sugar to rise; (#2)glucose AND (#3) insulin levels (these are two DIFFERENT tests - of course, I think the "fasting blood insulin test" is the most important and one of the least expensive tests; I suspect that your level is above the optimal 3 UU/ML; (#4) thyroid hormone levels (TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies). The (#5) CRP (C-reactive protein) test (testing for inflammation) and (#6) liver tests are also a good idea. Ask for a copy of all your test results for your own file – simply "normal" is not enough. I suspect insulin involvement, and resulting insulin resistance in skeletal muscles causes many symptoms (excess insulin is known to thicken and stiffen smooth muscles; skeletal muscles, too) - this may explain your walking problems and even bladder problems, since the muscles around the bladder are smooth muscles (I suspect bladder muscles are not contracting fully and you are retaining urine in the bladder. If the sphincter muscle is not contracting, urine will come out – wetting the bed at night. I believe the burning sensation in my feet and legs is actually due to the caustic hormone insulin damaging the inside of my blood vessels or affecting the muscles in the blood vessel walls (and not initially the nerves).

Since I believe insulin is a major player, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS) - a diet that will not trigger insulin production. Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, erythritol, mannitol, maltitol, lactitol, etc. (These promote insulin production, too.), remove all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Even whole wheat will spike the insulin and should be limited.

My suspicion is that Fatty Liver Disease is also involved in MS, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement in MS interesting (http://www.TerryWahls.com).

All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Please Help

Postby Rick1866 » Wed Jun 19, 2013 6:34 pm

Welcome to ThisisMS.
This is a great site with many knowledgable people with many years of experience.

Being new here myself and trying to find answers myself you have some great advice from a couple of very knowledgable people.
I noticed you said your Lyme test was negative if you had the ELISA test from what I have been reading is only about 5-7 % acurate and a more thorough test through Igenex is needed to get a much more precise breakdown.
Most GP/PCP doctors will only do the ELISA test because Lyme desease is very controversal .
LLMD's are specialist in Lyme desease.
Finding an LLMD doctor in your area can be very illusive but a great help to rule it out with the proper tests.

Lyme often mimics many autoimune deseases and getting misdiagnosed of any of them and can be very harmful by taking the wrong med intended for something else.

DIET is a very IMPORTANT piece of the puzzle as others have said.

Rick
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Re: Please Help

Postby CaliReader » Wed Jun 19, 2013 6:47 pm

Whether or not you have MS, that pain sounds like it's hard to deal with.

Gabapentin, Lyrica, Nortryptalene, Effexor and other meds are used for nerve pain. If Cymbalta isn't working, you can try something else.

No one will diagnose MS without MRI results, so that would be your next step if it isn't scheduled already. Good luck and hang in there.
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Re: Please Help

Postby essence » Wed Jun 19, 2013 8:38 pm

thanks, i've been tested for all the things you've mentioned, some on top of that, some at my own research and discretion too, i have been as proactive as i possibly can, my GP has been able to get me to skip lists to see a neurologist, and often able to get me cancellation appointments ahead of original appointments through persistence with other doctors and waiting on cancellation for the MRI as well which is on july 17th, i have more blood work to do tomorrow, double checking things, and anything else she can think of. my GP has been reading and researching as well during this time She has been my GP since birth so she knows my history, i consider myself lucky..
I've had x-rays of feet, we've ruled out a lot of things in such a short period,
Lyme disease has been tested for twice...
out of everything i've read about and researched and looked up symptoms for mine are most on par with MS, I have every single symptom of it.. all the other ones have certain other symptoms i dont have, or are missing symptoms i do have.. like i have no rash, ect, i will try look into an LLMD but i've already tested negative twice for lyme.

I have more blood work to do tomorrow, we are double checking some things, i've done glucose test or 'fasting blood insulin' test through the neurologist as well as a couple of other things he opted to test, not sure what though.

basically just waiting on the MRI really at this point to determine whether or not it's MS or the onset of potential., I just really hope I get an answer after this MRI i don't know how much more waiting i can handle to figure out what this is. And its all come on so fast.

I tryed Lyrica for close to 8 weeks, had a little benefit from nerve pain but not significant enough to make it worth the cost.

yeah the pain is the worst part, 2 perc's just numb the pain slightly. my GP was thinking of morphine 12 hour tablets, because she is dead against perscribing oxycodone she has made me aware of that every time i see her. but its the only thing thats been some what effective in making the pain manageable, and from my research orally oxycodone is stronger than morphine so...
going to try and arrange an appoint with my psychiatrist to see if he is able to prescribe me better painkillers just for the meantime until we find out the cause or "probable cause" because untill i find that out im just not going to get the proper medication, and be in constant pain. I pray that the pain goes away soon.

and im no stranger to pain, i've torn ligament's in my right ankle jumping off something 7 feet tall and 5 feet across and landing on my ankle sideways skateboarding, couldnt walk on it for 7 or 8 months with out crutches it was mangled , and i didnt even take naproxene no pain killers.. so for me to be complaining about pain means im in pain haha

some other things i notice, certain areas of face go numb sometimes too, or tingle, i've had a headache about 5 days straight now...

I've had a pretty healthy well rounded diet my entire life as well and have been reading about dietary adjustments that I have slowly been implementing and cutting back on other foods - my appetite is usually diminished, or i eat in smaller amounts, because certain foods, textures, and taste can make me feel nauseous or upset my stomach, and im use to being a diversified eater, music and sound doesnt always sound how it use to, lost hearing completely in left ear for 15 minutes one time, when i lay down a lot of the time it feels like i have to keep moving to try and keep my limbs and muscles relaxed, or they are wrestless im not sure .. im 185 lbs 6'1"... bending over for any extended period of time forget it, i feel like im going to fall over...

just nice reading around here and seeing i'm not the only person with these problems, a lot of the symptoms i can deal with its just the pain, and constant headache that really gets me down... ive had one 6 hour period of being pain free in the last 5 or 6 weeks, maybe about 9 or 10 days ago, no clue haha could've been more recent but it came with a nasty price hahahahaha, pain is a vengeful thing :P

Thank you for the responses so far everyone.. I guess right now im just a contestant on the waiting game :P... good luck to you rick as well, and anyone else who is waiting or trying to figure out there situation
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Re: Please Help

Postby lyndacarol » Thu Jun 20, 2013 6:03 am

essence wrote:I have more blood work to do tomorrow, we are double checking some things, i've done glucose test or 'fasting blood insulin' test through the neurologist as well as a couple of other things he opted to test, not sure what though.


The "fasting blood insulin test" is a completely different test from the glucose test that you have had. The insulin test is not routinely done; it must be specifically requested. Your GP can order it. It is one of the least expensive blood tests. (With your long-standing relationship, she is a very good person to have on your medical team.)

Diet is the main source of glucose (or blood sugar); a portion can come from the liver. Insulin is a hormone produced by the pancreas. I suspect your pancreas (for some unknown reason) is making an excess of insulin.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Please Help

Postby essence » Thu Jun 20, 2013 11:12 am

ok thanks i will definitely ask for that lynda, does anyone know if there any particular other autoimmune diseases I should be looking for? in the mean time that include many of the symptoms im experiencing? ive been trying to sift through them as best as i can, but i've had a headache 5 days going now.. i just saw my GP tuesday, got 0 sleep last night been up since 2am the night before that i guess, got to hospital at 7am this morning, i spoke with a crisis worker a couple of times, and emerge doctor, and they wouldn't let me admit myself, crisis got an appointment with my in hospital psychiatrist in august, thats a bit far away for my liking. or so the normal mental health units nurse shift ended as i arrived i walked past him as i entered, i feel he may have been more accomidating to me, as they offered to take me in on monday night. the emerge doctor i dealt with this morning is the one that doesnt even talk to me only prescribed me zopiclone, which i already have, said if i need anything pain related i need to see my GP but this time at the hospital he had the crisis worker say it for him, I was hoping because of my past mental health issue they would be willing to let me admit myself and maybe try do some testing for me since i've sometimes been having harmful thoughts late at night when I cant sleep. They deemed me not a threat to myself or to anyone else, i havent slept in near 40 hours or so, cant really remember the last time, however did get 30 - 45 min nap at hospital, and im really worried im lowering my seizure threshold if it was a seizure i had recently not sure if it was that or a tremor, but I was concious ..... numbness and tingling was through entire body for about an hour or so earlier this morning, i just dont get why im rapid cycling through different pain experiences, and varying so much in degrees of pain, and different types of pain and that the pain feels like its pretty much everywhere, or anywhere it almost makes me think people don't believe me or something, but I remain extremely beyond positive about the whole situation i know that has been getting me a lot further, i always am very thankful.... left hospital walked across street to my GP's office thankfully her office is across from hospital.. I did my blood work at the clinic there that i was suppose to do yesterday, and then went into her office and booked an appointment, they didnt even give me a date just said we will call you back as soon as we can fit you in which should be real soon. but it wont be today, i said thats good enough for me and left... Im down to my last 2 perc's and i've been needing to take another 1 an hour after the first 1, so i only have enough pain tabs untill dinner time tonight if i take them now, and the ones i took at 4 and 5 am this morning have worn off for the most part, was planning on taking them now and trying to take them both at once and trying to sleep right now after writing this but dont know whether i will be able to fall to sleep, i will try..
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Re: Please Help

Postby jimmylegs » Thu Jun 20, 2013 12:58 pm

if you can get copies of the nutrition tests that have been done, with specifics, that could be telling.

there's lots of info at this link:
regimens-f22/topic2489.html
an excerpt... "The first thing to understand when beginning nutrition investigations, is the unfortunate language of the lab. Specifically, the term 'normal'.
As described briefly above, the 'normal' range is often quite a broad range which in many cases includes both sick and healthy people.
There is a much smaller range within the normal range that can be described as 'optimal'.
For example, at one lab i'm aware of, the normal range for zinc is given as 10-20 umol/L. at an infectious disease clinic, the normal range for tests done there was 9-14 umol/L. the WHO's reference range is 11.5-18.5 umol/L. ms patients average in the low teens. healthy controls average in the high teens, with high end healthy levels sometimes over 20. an example of toxicity in research involved levels over 36."
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Re: Please Help

Postby essence » Thu Jun 20, 2013 5:54 pm

thank you i have read and bookmarked that link you kindly provided, i'm going to have to sit down with my parents and look through this to figure it out.

I now understand what you mean, regarding the broad range. I don't mean to come across as not listening or paying attention, im just having troubles comprehending a lot of things lately, i'm really new to this, but this has really helped me jimmy

I will try get copies of nutrition tests, and see if everything has been covered that you covered in your topic...

I didn't realise how big of a roll nutrition played in things.. Im new to this, It looks like I have a LOT more reading to do.

cant wait to get my life back in control.
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Re: Please Help

Postby jimmylegs » Fri Jun 21, 2013 3:29 am

you're very welcome :)

it's actually amazing what a huge role nutrition can play. i'm leaning toward athletic nutrient depletion as a likely culprit in your particular case, given your background.

please do have a read over the info in the link I posted above. it contains links out to other useful topics as well, such as a research compilation I put together at one time for a TiMS user named 'mirry' (who by the way later reported that her ms specialist decided to apply the nutrition info provided here, to all the MS patients in his clinic)

the thing I like best about using nutrition to deal with illness is that once you have the actual numbers, it's pretty clear whether your status matches someone who's sick or someone who's healthy. with that info in hand you have tons of control over where to take it from there, via shopping practices, food preparation and combinations, supplement options, etc. then you measure and see what effect your actions have had. so that you know if you are making progress, or need to work harder to achieve the nutrient targets.

the main problem is that this approach is not standard practice (YET). that's why having a doctor who is open to nutrition work is one of the most important parts of any health strategy. the first step is making sure you can get real numbers from the doctor, vs the blanket 'normal' feedback.

a good second step is to have a really excellent sense of how you are nourishing your body. a three day food fluid meds and supplement diary, plus concise info on previous diagnoses, meds, symptoms, and family genetic predisposition to things like cancer or diabetes etc, is important data.

going back to the info you've provided above, based on the competitive skateboarding alone, i'd be looking hard at your magnesium status right up front. daily magnesium intakes are typically well below general health recommendations, and magnesium is easily lost from stress of any kind, whether physical - from exercise (via sweat) to injury - or psychological. there are very strong well researched correlations between magnesium status and depression/anxiety. there's a LOT more to magnesium than that, but i'll leave it there for now to keep it as simple as possible.

as you read over the more detailed info on the nutrition post, do note in particular the targets for serum magnesium. hopefully you can get a serum magnesium test done, if you have not had it done already.

if you have any questions, i'm pretty much always around :)
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