Hi from Gold Coast, Australia

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Hi from Gold Coast, Australia

Postby Greenmachine » Wed Jun 04, 2014 4:15 am

Hi guys I am a 39yr old male diagnosed 4/5/2014
A bit of background
I have been an air conditioning tradesmen for the past 20 years since leaving school until feb 2013 when I had a work accident and injured my back. I was put on assortment of painkillers and physio treatment etc which was going great until they suggested a couple of chiropractic adjustments. Well since the adjustments I have had chronic back pain which a specialist said the adjustments had triggered an underlying condition called osteo chondrosis. I lost my job due to the amount and types of painkillers I needed to take to get through the day which included 2x 200mg srTramadol per day, upto 8 panedeine forte and upto 8 valium per day. Due to this I struggled to find suitable employment that wasn't so labour intensive that my back could handle and decided to get some skills to move into an office environment so I took on a Diploma of Business and a Diploma of Management. I was also experiencing extreme financial difficulty and diagnosed with depression and put on medication and started seeing a phsychologist about it. About 3 weeks into my study I was invited to go fishing offshore on a friends boat, That's when it all came about. I woke up at about 2am to meet my friends at the boat ramp. Once I got to the ramp I found my speech slow, slurring and stuttering. My friends and I first thought maybe I had a stroke during my sleep! I probably should have gone straight to A and E but still went out fishing then went to see my GP first chance I could get in which was 2 days later.He sent me to get a CT scan and the next day after he got the results called me to get me to go straight to hospital for some MRI's. I had the MRI's and while in hospital found my vision extremely blurry. A heap of blood tests and then a lumbar puncture later the neuro gave me the good news "I'm sorry but you have MS!" I was not sure what to feel at that point as I didn't even know what MS was but I knew it wasn't good. I was in the hospital about a week and it was explained to me very simply about the myelin sheath and cns etc but they didn't elaborate too much I think not to shock me. When I got home I got straight on the computer and researched as much as I could to know what I was in for. Overall I think I have accepted it quite well but not sure it has really kicked in properly yet. I've watched a lot of peoples story's on you tube etc and found that a close to normal life can still be had and although I know it could go pear shaped rather quickly I have developed strategies to deal with it as best I can. I was put on 5 days IV steroids and then about 5 days oral steroids which helped with my speech problems but I am still yet to have an improvement with my vision. I have an appointment with an Opthalmologist next week but from what I have read I think he is going to say Optic Neuritis but we will see next week. The only other symptoms I have things that have come on a few months prior to my diagnosis but hadn't been looked into by my GP such as bladder problems( increased frequency and not able to get flow going etc) And also what is called the MShug! I first had the ms hug about 8 months prior to diagnosis when I woke up one night thinking I was having a heart attack. Extreme chest pain. I went straight to mu GP the next morning and he did a cardiograph to make sure all was well there and he put it down to my back pain radiating through to my sternum and a said take an anti-inflammatory and should be ok. I have since had this happen quite regularly and my neuro said to try lyrica to see if that helps which I am going to try this week. I have also realised I am experiencing cognitive problems and know all about brain fog and physical and mental fatigue already. Next week I should start my DMD which looks like will be Tecfedera. So that is my story so far which I'm sure will be just the start but after reading posts from this forum I am sure I will have a good Knowledge base and support network so look forward to learning from you all and perhaps when I gain more experience with MS I can share with others also. I am a bit had it after writing this I can't be bothered proof reading it so I apologies if doesn't make sense but I think I got there in the end 8)
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Re: Hi from Gold Coast, Australia

Postby jimmylegs » Wed Jun 04, 2014 4:24 am

hi and welcome to the forum :) you are right - TiMS is a great place to find support!
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Re: Hi from Gold Coast, Australia

Postby lyndacarol » Wed Jun 04, 2014 7:16 am

Welcome to ThisIsMS, Greenmachine.

When your doctors began looking for the cause of your symptoms, I hope the first thing they did was order testing for a possible vitamin B12 deficiency. Even the ophthalmologist you will see soon could order the necessary testing and certainly your neuro SHOULD. Many of your symptoms appear in this video's Signs and Symptoms list:

"Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0

I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."


Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment (your description: "cognitive problems")
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

You have mentioned bladder problems; in part two of the documentary, it is mentioned that B12 deficiency causes uro-genital nerve damage (urinary incontinence).
If your neuro made the MS diagnosis after finding oligoclonal bands (O-bands) in the lumbar puncture, be aware that O-bands can also be the result of a B12 deficiency.

I think we are a supportive group – we wish you all the best.
Last edited by lyndacarol on Wed Jun 04, 2014 10:43 am, edited 1 time in total.
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Re: Hi from Gold Coast, Australia

Postby jimmylegs » Wed Jun 04, 2014 7:52 am

(and please note that b12 is just one of several nutritional concerns when it comes to ms...)
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Re: Hi from Gold Coast, Australia

Postby Greenmachine » Thu Jun 05, 2014 8:31 am

Thankyou everyone for your welcome. As far as I am aware they didn't check for b12 deficiency. my lumbar puncture came up clear and Mri of the spine showed no lesions but Mri of my brain showed many old lesions, I mean there looked like hundreds and 2 large recent lesions and also 2 large black holes. I think they made the diagnosis by me having old lesions and now the new lesions but that is just how I interpreted it. I watched the video about b12 deficiency and when they mentioned that it effects serotonin levels I became alarmed as over the last 10 years I have been put on antidepressants a couple of times. The first thing I will be asking when I see my neuro next will be questioning b12 deficiency. I don't see him for another 3 months but I will bring it up with the opthamologist next week and also with the ms clinic the week after when they will be starting me on tecfedera. Its getting late now but I will do some more research on b12 deficiency tomorrow at a better hour. Thankyou very much for the info and I will be getting this checked out as it really makes sense that I could possibly have been misdiagnosed.
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Re: Hi from Gold Coast, Australia

Postby NHE » Thu Jun 05, 2014 8:22 pm

Greenmachine wrote: The first thing I will be asking when I see my neuro next will be questioning b12 deficiency.


Sometimes MS neurologists can be resistant to thinking outside the MS box. If you have problems, then request B12 testing from your PCP or an internal medicine doctor. MS is a diagnosis of elimination. B12 deficiency can mimic MS and needs to be actively excluded from the diagnosis.
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Re: Hi from Gold Coast, Australia

Postby jimmylegs » Fri Jun 06, 2014 2:30 am

b12 is established as a differential dx for ms - it shouldn't be any kind of challenge to the doc to request that b12 deficiency be ruled out. my neuro tested mine the second i mentioned concerns due to vegan diet. the story gets more complicated but as for the interacting with docs re getting a b12 test, there should be no drama whatsoever. if you're vegetarian especially. if not, personally i'd probably take a look at the whole diet to see if any of the other usual suspects might be worth testing (once you get past vitamin b12 and d3 then you're into the more outside the box territory)
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Re: Hi from Gold Coast, Australia

Postby Greenmachine » Sun Jun 08, 2014 11:15 pm

Thanks guys. I will be asking to eliminate possible b12 deficiency. My vitamin d levels were 71. not sure 71 what but the acceptable levels from what my neuro explained are 50 - 150 and he recommended to take vitamin d supplement which I am now taking at 1000 iu d3 daily. I have been reading posts re: too much d3 but at 1000 iu per day I think I'm safe. I also take zinc supplement and Ginkgo Biloba 2000mg.
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Re: Hi from Gold Coast, Australia

Postby Greenmachine » Wed Jun 18, 2014 3:45 am

So I saw the ophthalmologist yesterday and went through a bunch of tests including field of vision and turns out I have no vision in the lower left hand quarter of both eyes and patches of no vision throughout both eyes. He said both eyes were healthy and the cause was due to a large lesion in my brain which is positioned in the path of the optic nerves so the brain is not registering the lower l/h quarter of both eyes. He said hopefully after I start my DmD(tecfidera) this lesion may reduce and may improve my vision. I am seeing an optometrist tomorrow to see if they can provide lenses to improve the blurriness of my remaining vision so will see how that goes. I did ask the ophthalmologist about b12 deficiency and he said to talk with the ms nurse to run some tests for me which I will be doing tomorrow aswell. See how it all pans out tomorrow!
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Re: Hi from Gold Coast, Australia

Postby Greenmachine » Fri Jun 20, 2014 2:16 am

Went to the optometrist yesterday and quite relieved that I can get glasses to improve the vision I do have. Also went to the ms clinic and asked the nurse about possible vit b12 deficiency and she is doing blood tests for me but she said looking at my mri in her experience they are definite ms lesions compared to b12 deficient lesions. When I get the results from blood tests I will know for sure. She has also recommended uping my vit d supplement from 1000 iu to 2000 iu daily. My neuro had recommended that I start Tecfidera but the nurse has now given me the option of Tec, Gilenya or tysabri and after doing research on them all I am tempted to go tysabri. I am jcv neg and know the pml risks but think that its worth the risk
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Re: Hi from Gold Coast, Australia

Postby Punchy » Wed Jun 25, 2014 8:38 am

I am glad to hear you have a plan, it sounds like you're on the right track.

All the best and here's hoping that lesion shrinks quickly.
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Re: Hi from Gold Coast, Australia

Postby Greenmachine » Sun Jun 29, 2014 4:12 am

Thanks Punchy, will see how it goes
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