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Old 01-24-2016, 05:00 PM #21
Albertakewl Albertakewl is offline
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I have some of these symptoms as well for 1.5 years and the drs are clueless . I would love to chat to you if u would like.



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Originally Posted by LondonLady View Post
JoMar what were you diagnosed with in the end? Was it RSI or are you saying it was a misdiagnosis?

Me? I have been writing and on a laptop 5 days a week for 10 years! Lots of high pressure, fast typing too.

*administrative edit per guidelines*
So I think I will now have to retype my symptoms - here goes!
  • Right foot droppage - note , not sure if this is genuine as i do have one hip higher than the other, my right hip being lower, it sometimes feels my leg is shorter! so that may actually be the realissue, plus muscle weakness.
  • fatigue
  • tongue 'tickle'/light zap or maybe its a spasm in one tiny patch. doesnt last long and doesnt hurt. like a light zap
  • exhaustion for no reason
  • depression
  • anxiety
  • seeing things in peripheral that aren't there - shadows, movement, colour
  • muscle spasms/fasculations all over - first they were painful in parts (right foot, right hand, butterfly feeling in belly muscles,)
  • Muscle fasculations all over, left and right side - no discrimination. could be any part of body - light butterfly type sensation - doesnt last long and then goes
  • strange zaps and electric sensations through body inv arious parts and on both side of body
  • vertigo! sometimes manageable other times disorienting. felt like i was on a boat
  • slight finger tremor (up and down) , very subtle but strong internal 'vibration'
  • right hand ring finger sideways waggle - these muscles are all very tight through fingers (pinky and ring) all the way up my forearm and even my shoulder - feels almost dislocated at times? got a lot of clunking going on in right side. got some clunking in shoulders on left side too - not as bad
  • terrible muscle weakness all over. tired from just lifting arms and brushing hair
  • at one point i was craving bananas like CRAZY!!!! Before i saw the dr i ate about 15-20 a week. It was an intense craving
  • Forgetful
  • Brain Fog
  • Tingling. Felt local to right side but then was on left side too
  • Pain sometimes behind right eye - then a migraine would come on.
  • Overall tightness in back and neck - sometimes jsut feels i need a chiro to crack the ***** out of everthing and put it all back in place?!
  • Couldnt recall certain words - normally as a writer my vocab is super strong.
  • waking up with an inner vibration feeling - very unnerving and stressful. felt it from within and could see it in hands. would calm down a few hours after waking
  • Early in 2015 had a weird thing happen - was working at computer and stressed, typing fast and talking same time. Suddenly my vision went strange, like wavy/blurry. It totally freaked me out - i told colleagues i had a migraine but truly i couldnt see them very well. Then in about 15 minutes it totally passed and was normal again. I had a slight headache after. I have suffered from bad migraines in the past.
  • Again about 6 months later another strange thing with vision. Was working in sunshine and on computer again - stressed (theme here?!), and wavy vision again - headache with it this time. as soon as the headache went, my vision was fine again.
  • couldnt stop sleeping! guess that was part depression but also deeply felt my body needed to 'recover'

So! Sorry for the LAUNDRY LIST everyone! But I had to get it all out there.

Now. My blood test came back with Vitamin D3 at 6 ng/ml and D2 at 2.4ng/ml. That's low! The more reading I did on the net, the more I realised at least some of these symptoms may be attributable?

I took a booster of D at Docs recommendation. Honestly - after 1 month I feel like myself again. Literally everything on that list has improved. The depression and mental fog lifted week by week.

The crazy constant butterfly muscle spasms have reduced significantly - still there but i would say 75% reduction.

The hand and internal 'vibration' i could feel and noone could see has stopped altogether.

The finger sideways waggle remains - but lessened. Not sure if thats cause i have been doing massages and acupuncture for tendonitis in right arm? or Vit D? Dont know if its muscoskeletal issue or neuro.

I do know I constantly have burning pain when i type - in my righthand, particular to my ring finger and pinky. also my right hand is always cold! my fingertips especially.

But anyway, I bought some cheap imitation converses. I went for a walk before my VIT D treatment. I was already super weak but determined not to stay depressed. On my walk I felt tingling pretty much everywhere, but mostly in right leg. Then i just had to sit. I dont know if i imagined it but my right leg felt 'lazy when i walked. but seeing myself in the reflection i looked totally normal when walking. my leg just felt - too light or something. like i couldnt feel my foot land as well as i had before? maybe bad circulation? anyway . walked home alright just felt weird. also tripped on concrete slightly - though these shoes are a little 'floppy' big and not well made. when i walked with my nikes and after vit d treatment - i consciously focused on my walk and had no trips or strange weak feelings. i am hyper aware of one hip being higher though, and was once told to wear a special insole on my right foot. wondering if now i am paying the price of not doing that!

anyway now i can sit up and type. I can wake up at a normal time (10am). I am not constantly spasming - i am not brain foggy and depressed. I remain slightly anxious - but thats because my Dr gave me 'the face' when i explained my symptoms. He first thought essential tremor, now he wants to rule out MS. mind you, there has been no follow up assessment from him. he just saw me at my worst. Im not convinced he is a 'good' or even slightly 'thorough' dr.

Another Dr said RSI and anxiety. But still to go to neuro. But she took the time to assess my muscles and see if their was wastage or anything, and compressed nerves in wrist to see if it tingled etc.

My acupuncturist - chinese dr said i have tendonitis badly on right side and some liver expel issues plus generally stressed and 'sad'. haha. yay!

My neuro is late feb - *administrative edit per language filter guidelines* Just got married and started my life. I keep being paranoid about any little symptom now. keep staring at my outstretched hands to assess a slight tremor. I test my memory worrying about alzheimers. I keep youtubing sideways finger waggles and MS.

I dont know why im so convinced I have MS. I hope I dont. I guess i want to prepare myself if it is?

Magnesium and Vit B seems to have helped me a lot too. The magnesium I take is normally H&B 500mg. As I was told with my D that low, i was surely super deficient in Mg too.

Now due to budget (not working right now), im on Boots Mag & Calcium combo. It does have mag oxide! its 800 calcium and 375 mag. I honestly only bought this one due to money issues and an interim solution. i know for sure the H&b brand is better and i also 'feel' i need more MG over calcium. it somehow balances my muscles. Ever since stopping the old brand, my little fasculations and muscle butterfly twitches are back. Only slightly, but it was an interesting observation.

My vit B12 was 467ng/L. Serum folate was 9 ug/L

I was concerned that my Red Blood Count was 4.83 (10*12/L). that's the high range for this report.

Also my Red Blood Cell Distribution Width was 14.3% which is the high range for this report also. What does that mean exactly? Nurses, anyone?

Corrected serum calcium 2.16mmol/L - lower than normal range.

If anyone has any inklings - let me know!

Otherwise I will say - vitamin D made me feel SANE again. Thank God. I felt so miserable and not myself.

I am convinced Magnesium helped a bucket load. And maybe I'm the type that needs a higher B12 baseline.

ANYWAY! Sorry for the ramble appreciate any thoughts and hope I can help people on here too with my experience and ideas

LondonLady
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Old 01-24-2016, 05:41 PM #22
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Please feel free to inbox me to share your experience! Many thanks for making contact!
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Old 01-24-2016, 05:54 PM #23
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Hello LondonLady,

Quote:
Originally Posted by LondonLady View Post
When I took a hot bath tonight, I noticed that I got a little shakey in my hands. Now I'm aware that's typically a MS symptom, so I'm hopeful there might also be another reason? I wasn't super tired or dizzy, just my hands were slightly shakey. Stopped after I got out and cooled off.
Many, many, many, many years ago Multiple Sclerosis was diagnosed based on a "hot bath" test. They would put a person in a tub of hot water and after a few minutes if the person had a problem getting out due to weakness or could not walk they were diagnosed with Multiple Sclerosis.

Thank goodness for technology There is a diagnostic criteria for Multiple Sclerosis, The revised McDonald Criteria: http://www.va.gov/MS/articles/2010_M...ia_Revised.pdf

The criteria relies heavily on MRI evidence. There is other testing, if positive, which can help support a diagnosis of MS.

There is no symptom(s) unique or exclusive to Multiple Sclerosis and all other causes need to be ruled out. It is difficult and sometimes impossible to receive a diagnosis based on symptoms alone. Testing needs to indicate MS as a possibility.

Quote:
I guess what worries me is knowing that they are now using Vit D to treat MS
Multiple Sclerosis treatments:
- Disease Modifying Therapies to treat the disease.
- Symptom management medications to try and treat some of the symptoms.
- Steroids to treat relapses.

Vitamin D3 is not considered a treatment for MS but is believed to affect the disease negatively when deficient. Vitamin D deficiencies are being linked to many different conditions.

I would have no way of knowing if you have MS or not, only testing/ Neurological exam and a Neurologist can give you that answer. Usually when someone has "all over" symptoms it's not usually MS. MS just doesn't work like that.

If you haven't had a recent eye exam it would be a good idea to see an Ophthalmologist to discuss your vision problems. Some of what your vision issues appears to fit in with Migraines with/without auras.

Best wishes in your upcoming Neurology appointment.
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Old 01-28-2016, 06:50 PM #24
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Snoopy! Thank you! SO helpful!!!!

Recently I've noticed an issue with incontinence. How much of it is perceived - i'm not sure. Basically, I have recently noticed that i seem to 'drip' now and then. And have the sensation that I've leaked more than I have. When i inspect my underwear they are somewhat lightly damp, now and then - but not soaked and i never urinate on myself where its urgent or flowing. It's a strange leaking sensation with no pattern that happens now and then. Maybe thats also due to getting older? I have no idea. Only 29 so not sure how that works haha.

Also more concerningly, the weird feeling on right side of leg is back. When I walk I just feel i have to focus more on lifting my right foot than my left. theres a tightness in my right ankle and leg. its annoying. maybe its lack of blood flow or something, because i feel it in my right forearm and wrist too at times. and my right hand and arm is always colder than my left.

when i walk i sometimes seem to scuff my right foot. i dont fall or lose balance but it feels laborious to walk properly, tiring for my right side. its very strange. sometimes it feels better - after i spend an hour stretching my muscles, but overall it does feel slightly different. i do have pain on my right foot - ball of the foot. strength in that leg seems less. again, no idea if related to having a lower right hip than left, so over extending one side over another.

my hand tremor is all but gone. it only flares up when i take a hot bath - and just slightly. nothing crazy. and i dont feel dizzy or that i cant walk after a bath.

i have a continual right-side pressure near temple, behind right eye and in between eyebrows.

i am really starting to wonder if i have some circulation issues.

i also wonder if its possible i have a virus which is taking a while to kick. i do feel loads better than 3 months ago - i put it to vit d helping, vitamin b and trying to sleep better too. but theres still this odd flicker and twitching of muscles now adn then - all over with no pattern. and a general feeling of things just not being right.

i wonder if theres such a thing as a dormant virus, or a virus that takes time to fully beat. last year i got really sick with an intense stomach bug and flu. it was the worst ive ever had in my life. vomiting, diarohea, terrible muscle pains all over, fatigue, exhaustion - the works. awful. had it for a good 2 weeks. and i gradually recovered. no idea what it was, we thought food poisoning from a dodgy burger.

anyway. its so weird feeling outside my body when walking. like i have to focus on lifting my right foot.

its weird wondering if i peed myself - when i didnt. tho, the dampness is something new to me. as i said, its not always - but it does happen and makes me feel weird.

Has anyone ever read or experienced something like this and then it has just gone away in time?

I feel like there is so much we dont know about science and mediciine that surely some diseases and viruses are not yet detectable.

Also i found a woman online with a tremor like mine. She has all the symptoms i do too - and weirdly is vegan - even more weird - has the same birthday date ! We started talking. She got an MRI and spinal tap - no MS detected. She's 24. She said she too feels weird when walking - even tho it looks normal to any outsider, and that her knees buckle at times. also - regarding the damp underwear - same thing. She also skips words or letters like me at times, and has memory issues now and then.

Her neuro said its anxiety and stress and another said its likely a virus.

Any thoughts on this novel of a story? lol thanks guys.
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Old 01-30-2016, 12:54 PM #25
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Hi London Lady

Just a note in case you missed it on other threads - it's important that you stop taking the multi-vitamins for a few days before any blood tests as they can produce false elevated readings - especially the B12 - MrsD would concur.

I noticed your comment about another poster being vegan - are you also vegan? (sorry may have missed reading that) - your need for B12 supplementation may be higher. Also check if the B12 in your multi-vitamin is methylcobalamin and not the cyanocobalamin form which is less readily absorbed.

All the best for your neuro appt.
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Old 01-30-2016, 02:07 PM #26
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Quote:
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Hi London Lady

Just a note in case you missed it on other threads - it's important that you stop taking the multi-vitamins for a few days before any blood tests as they can produce false elevated readings - especially the B12 - MrsD would concur.

I noticed your comment about another poster being vegan - are you also vegan? (sorry may have missed reading that) - your need for B12 supplementation may be higher. Also check if the B12 in your multi-vitamin is methylcobalamin and not the cyanocobalamin form which is less readily absorbed.

All the best for your neuro appt.
Thanks that's a good point. Only thing is I had my blood work done last year when I wasn't taking any supplements or vitamins.

I only started taking vitamin d at Drs instruction and then I took b12 as apparently I can improve it.

That wouldn't affect an MRI or anything else though would it?

Yeah I'm not so vegan right now haha. Part time vegan
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Old 01-30-2016, 03:22 PM #27
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Do any of these symptoms sound like Parkinson's? And would Parkinson's be responsive to vitamin d therapy? Cause the tremor is hardly there anymore.
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Old 01-31-2016, 04:04 PM #28
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Hello LondonLady,

You really need to consult with a Physician. Your symptoms could be due to just about anthing. It's impossible for you to figure out what may or may not be wrong based on question/answers on a message board. We are unable to do tests and evaluate a person.

The most common for urinary incontinence in women is stress incontinence.
http://umm.edu/health/medical/ency/a...s-incontinence

But, there is no way for you to know without Drs. and testing.
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Old 01-31-2016, 05:10 PM #29
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Quote:
Originally Posted by Snoopy View Post
Hello LondonLady,

You really need to consult with a Physician. Your symptoms could be due to just about anthing. It's impossible for you to figure out what may or may not be wrong based on question/answers on a message board. We are unable to do tests and evaluate a person.

The most common for urinary incontinence in women is stress incontinence.
http://umm.edu/health/medical/ency/a...s-incontinence

But, there is no way for you to know without Drs. and testing.
Thankyou snoopy u rock!

Yeah I've read it's pretty common - the stress incontinence , and may be to do with sexual activity lately :/sorry for info.

So what I have definitely looks like a very fine, mild, postural tremor. Improved since vitamin d treatment.

I'm just left with odd , minor muscle flutters around my body. And a tiny "buzz" that lasts about 1second, now and then , throughout body.

I definitely get right side migraines too. Happens left side too, but seems to come from pain in my neck and back. Need chiro.

Anyone on here with benign fasc syndrome or fibro? Wondering if any of my symptoms match.
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Old 02-04-2016, 01:49 PM #30
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Just thought I'd update! The incontinence has improved - hardly there now.

Though I have been feeling this light vibrating sensation in various places in my body. It's non discriminating - either side of body and anywhere.

Light, short, muscle flutters too. Nothing painful.

So weird. Now and then my face feels tingly or numbish in areas. but then again its happening everywhere. Lasts a few moments then gone again.

Ants crawling sensation all over now and then too. Weird!!

i am so over this. cant wait to see neuro to get tests done.
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