Hey Everyone

I have an update for you.

I finally had the MRI on 1st March.

Firstly at the consult in February, I had a horrible Neuro with a terrible bed-side manner. He literally yelled at me and my husband for being 5 minutes late and initially refused to see us! The nurse supported us and said we had been here the whole time outside of that though, he claimed to call our name 3 times over 20 minutes (lie!).

Finally he saw us - my husband and he argued, I cried. Finally he took my symptoms. Oddly (or predictably), he was very thorough and methodical. The brilliance of brevity! haha.

He said my initial check-up and fundamental faculties looked normal. He asked what I was worried about. I said MS. I explained all my symptoms and he said "Ok, 90% not MS 10% MS, we will do an MRI just to check it out but I'm sure it's not MS". He even said it might be a deficiency. And this made me feel sane. My GP scoffed at that idea, but my neuro brought it up himself! I feel I need a good magnesium. I feel I also need to keep up with my vit d, fish oil, selenium and cq10. Makes a huge difference - has done so far anyway.

So I had the scan on the 1st March, a few weeks after this crazy consultation. And I'm now waiting for results. The Dr is on holidays (he really seemed to need it lol), so when I find out results I'll touch base.

For now, my symptoms seem to be better. I even went back to the gym. First day I did 30min light cardio. A two day break later I did 1 hour 15min light cardio. Exercise seems to help me a lot. So I will keep it up, but interval training - one day on, one day off, and weekends off.

I thought I'd record something novel and new though, a different observation and theory I have.

I tried to assess what I had done differently before, during and after all these symptoms cropped up. The biggest factors were:

• Stress levels (doing too much and worrying a lot)
• Diet (I used to be gluten free - by choice, not necessity, and mostly lactose free)

Now, when the issues rared their ugly head, it seemingly started with a slight side-to-side hand tremor, but i suspect it all started far earlier than that. I believe it started with a feeling of malaise, anxiety, depression and fatigue and possibly even muscle twitches that I palmed off as random.

I think I just got used to that 'crappy' feeling and took it as being normal for a stressful period in my life. But then the sideways twitching fingers came, and the internal tremor sensations, and muscle twitches all over. I also had vertigo badly - like i was on a ship, and sharp shooting pains, brain fog, issues with memory (for a short period of time).

Now, after getting diagnosed as vit d deficient 6ng/ml (super LOW!!), i was on therapy for it for one month and i noticed a HUGE lift in mood, memory seemed to be normal again, vertigo gone completely. The muscle twitches remained as did the side to side right hand finger shaking (mostly pinky and ring finger, sometimes pointer too). But the main thing was I could concentrate on things as I had before and be rational with my emotions and fear. I was no longer out of control with worry.

I initially suspected Parkinsons, then I found out a side-to-side tremor isnt traditionally parkinsonian, and I also learned that my other symptoms like body wide twitching, non specific body wide internal tremor was not parkinsonian either.

Then I thought MS - as in a hot bath, or in a heated environment, my sideways twitch would rattle off more intensely. Then I learned that the old 'hot bath' test is not at all reliable and heat can fire off inflammed muscles.

I know I have some RSI in my right wrist and hand for sure - every doctor has said it. THe point is why?

A woman I spoke to had the exact same symptomatologie as me and her two MRIS were totally clear. She had a MRI on her hand though and it did show over-firing muscles between fingers (same as me). The Dr said they arent sure why or where its coming from - the woman i spoke to said the Dr isnt very good though, and couldnt even name certain muscles in the hand. So - she will get a better explanation from another dr.

I wanted to tell you all something though. Last year with environmental stress (home life, work, big life changes: marriage, new company, overseas living), I started to eat poorly. I went off gluten - free, I went off soy and returned to full wheat products and lactose. This is literally a synchronised timeline with my symptoms. And, the more I ate of this stuff, the worse everything got. Co-incidence or cause?

I did a test recently. I instinctively felt I had to go back to gluten free, as my stomach would hurt and feel bloated after most meals. Its amazing what you put up with when you are stressed isnt it...

Well I had my last week of wheat foods and what a week it was. My twitching was at an all time high. I was having bad migraines. I even got itchy skin and a slight rash on my upper chest. I also got a blocked nose (no cold though) and sore throat. The sharp shooting pains, were back too. It was chaos in my body. I KNEW something was linked.

In the last week, I have gone gluten free again and let me tell you this. No migraines - about 75% less twitching - I'm not as fatigued or tired, as you can tell by my gym return! - no skin itching - no sharp pains in belly - no sharp shooting pains.

The next thing I want to exclude is lactose. This is all gut feeling science here guys, or holistic care. I just 'FEEL' my body is super inflammed. There is no other way to explain it but I feel my muscles and overall body had been in a constant state of inflammation.

I feel calmer, lighter, more able.

Don't get me wrong, I still have a 'tight' right shoulder/arm/hand. I feel I need to see an osteo - wondering if my hip height (one higher than other) is causing a bunch of issues. WHen I flex my right hand back (stop sign motion)i get sharp shooting pain down the top of my hand and the back of it too- and burning through my muscles. It feels like everything is twisted or nerve pinched.

But the muscle spasms are so so so much better - soooo much less its crazy. No migraines either. I had broken out in a bunch of pimples in the first 3 days of no gluten, almost like a detox i guess, not sure. but they are closing up and going away now. also i had bad breath and a coated tongue for a few days, thats now going too. I'm going to start taking Acidophillus again.

Today i woke up and the heater had been on in our home. We normally turn it off. Usually, I would have severe body tremors (internal sensation). Today I had very light flutter, internal tremors. that stopped as soon as i woke and walked around a bit. Interesting.

So sorry for the huge post but I had to update! If i can help anyone in a way it is worth it!

I will let you know my MRI results and Ill also keep you posted about my lifestyle changes and any observations i make.

Next stop: osteo and chiro.

Hope u are all feeling a bit better over time.

Very best

LondonLady

My sister deals with advanced MS and sadly she did not do a lot of diet change over the years. Eliminating food types that could be doing damage is where to start I believe for sure.

http://www.glutenfreesociety.org/lec...cular-mimicry/

We are talking about Lectins in an RA post and I've renewed my interest and will eliminate a food that COULD be a culprit for the joint pain I live with. I stopped bringing breads into my house many yrs ago.

Hey Caroline thanks for your reply!

Sorry to hear about your sister having to cope with MS and again sorry to hear about no diet modification. I can't say I have MS but whatever is going on with me definitiely is aggravated or worsened with gluten. No-one can tell me otherwise as there's such a huge, HUGE difference between how i feel off gluten and how i feel on it.

Good idea re no bread in your home for years! I salute you for sure!

What are your ailments that you cope with? Any MS or neuro issues or is it other types of things?

Thanks again for your reply!

Hi, since you still don't know for sure about your issues, good to keep healthy regardless...

I posted a link in the MS area about Oxidative Stress in MS and basically this is saying how important antioxidants are for Everything we may be dealing with.

I've been taking grape seed extract for 21 yrs this year and may have mentioned that but there is more evidence on how important too for MS patients. I have a friend on another board who deals with MS and I don't think she takes any drugs, maybe one I'm not sure, but she works with all supplements and diet.

Me, I live with bodywide OA and hip replacement MESS. But never sick. I've worked long and hard with supplements for everything from thryoid to hormones, etc. etc.

Thanks for ur reply Caroline!

Okay so you don't have MS? But what's the acronyms you wrote - excuse my ignorance on acronyms.

Yes agree re keeping the stress down in the body as far as possible!

Well coming back from a acupunture and massage today my whole right arm went numb during massage. I've got maaaajor neck issues from being at a pc my whole life and seems i have twisted muscles that touch nerves. Makes sense. Hurt heaps to get it massaged and pin poked but strange opening and relief in back

Still waiting on ****** MRI - sigh. Do hope its not MS though, starting to think it really might be other issues - a perfect storm.

3 weeks of gluten is interesting. I've broken out in painful cystic pimples and recovered from that, had incredible bowel movements, been 'shakey' with migraines at times (until i do a bowel movement) and then it goes away. Weird right?

Some days i feel sooo fatigued and sleep more than usual, other days i feel an improvement. Overall, since quitting gluten, i do feel better on the whole. It has been a slow improvement though, quite odd. When i talked to a gp about it - as a detox - he scoffed in my face and said 'theres no such thing'. Hes giving me a rudimentary blood test for celiac, however - being blood, id have to be on gluten for it to catch antibodies. Its not worth going back on gluten in my opinion, my overall inflammation feels better - so no chance on going back!

i learned i can do a DNA test tho, and dont need to be on gluten for it to pick up celiac. Given that Dad is celiac, (but he doesnt trust the 1960's diagnosis), i will bet i have the same gene. Even if he still isnt convinced, ive seen his core reactions; tonsilectomy, hives, chronic sinus issues, throat cancer, gut issues, constipation (chronic) etc. so - has to be something going on.

I had thought it might be CFS - fatigue, brain fog etc. As i am still fatigued sometimes. The muscle twitching has reduced (unless i get 'glutened'), and the arm and hand pain is seemingly improved with remedial massage and acupuncture. So how can this be MS?

Anyway - very keen to get the results. ive gained a ton of weight in this 6 months - from not gym'ing and eating well - so now i started to lose a little weight , given i have more energy and move more. Bt some days i feel i 'pay for it', by feeling exhausted the following day after gym. I have no idea now if its pyscho-sematic or purely physical.

Can anyone else relate to these symptoms and or improvements over time ? with or without attitude adjustment and dietary adjustment?

I saw my 19 yr old grandgirl last night and after struggling with meds, peels, laser treatments for acne, she is free of the acne....going gluten free has done it. She went thru a detoxing for a while but now is much better. She struggled for 4-5 yrs....and the stomach bloat is about gone. She got serious and has taken control...her skin looked beautiful.

http://www.huffingtonpost.com/maura-...b_2601648.html

It takes a lot of work on one's part to get to better health. For me, I've lost faith in doctors, I need to make myself healthier as they don't do that.

LondonLady, coeliac disease is an autoimmune condition.

Its diagnosis is complicated - it usually starts with a colonoscopic examination, looking for lesions in the gut.

This can be backed up by looking for antibodies specific for an enzyme called transglutaminase - usually both IgA and IgG antibodies are tested for - this involves taking a blood sample and sending it off to a lab for examination.

Genetic testing involves seeing if somebody has specific forms of a protein called HLA-DQ2. The HLA proteins are important in the immune system but some people with these specific forms of HLA-DQ2 do not have coeliac disease and some people with coeliac disease do not have them. Because of this genetic testing is thought of as being confirmatory.

This general information about coeliac disease may help you; http://www.niddk.nih.gov/health-info...ges/facts.aspx.

Personally I think it's a good idea to exclude all wheats/grains as could be most today are GMO products, not like the wheats of many many yrs ago. Check out the book the Grain Brain. I have never done a colonoscopy nor has my grandgirl and if you want to talk nutrition about a specialist how about a nutritionist...not an MD. Many just do it to feel better overall. I'm somewhat gluten free but do my slipping.

--the DQ8 genetic background can also be associated with frank celiac, and there is some evidence from the work of Dr. Hadijvassiliou that the much rarer DQ1 background can be linked to non-gut manifestation of gluten sensitivity--in particular, neurologic ones (peripheral neuropathy, ataxia).

And, since a rash was mentioned, one of the most obvious non-gut signs of celiac is the pustular rash know as dermatitis hepatiformis:

http://emedicine.medscape.com/article/1062640-overview

http://www.webmd.com/skin-problems-a...-herpetiformis

Hey Everyone!!!

Firstly a big huge thanks heaps for sharing ur valuable wisdom. I know we all walk a lonely journey dealing with irritating and sometimes debilitating issues so|: thanks!!!

I got my MRI back and very happy to report there's nothing to note! No lesions, scars, nothing to note at all. Amazing. So so happy with this. Weirdly enough, before I got it back, I was really starting to feel better and i cant say if its correcting vit d, magnesium, rest, massage/acupuncture or getting off gluten (or ALL of it) - what i can say though is i still feel im 'healing' day by day. And I am so proud of myself for not just taking any western theory as fact.

I will keep doing gluten free. I will get the DNA test as my dad is a celiac and i feel (in my gut) I at least have an allergy to it. I refuse to go back on gluten to have the traditional test as I know myself well enough that for whatever reason, i cannot tolerate it.

i have just finished 3 weeks off it with break outs in painful cystic pimples, migraines and constipation - irritability and strange cravings. Now i see the light! The pimples are healing, my mood is so light and for the first time in months, i woke at 8am today after just 5 hours sleep. That has not happened since last year in July!!!

I still have slight, minor muscle twitches.
I still have a very sore and painful right shoulder, neck, back, arm, forearm - you name it. But I am going to see an osteo and chiro for spinal assessment - i will report back with findings.
I still get a pressure feeling in my head - right side, which i now trust is from an injury in my neck/back.
I still worry, but not 1/4 as much as I did 3 months ago. I am learning to trust my own discoveries and not put everything in or on Dr.s - sorry, just my own opinion.

I feel I have had 'the perfect storm'.
10 years of PC use and no breaks.
Moved to UK from my home of Sunny Australia (no vit D exposure)
Eating crap (went off my gluten free lifestyle)
Loads of life stress (dad with cancer, marriage, change country - job, started company).

So in summary - i know what happened and what still happens on a smaller level isnt just 'all in my head' as some drs would dismiss or indicate. I also know i dont have essential tremor. I now concur I do have RSI and worse - wait for my report from osteo/chiro. I now concur lack of vit d can REALLY mess you up psychologically and even physically if it's severely low. I also know that going through this isn't for nothing. I now value self-care ten times more than i did before - i do need to stop and slow down. I do need to stress less. I do need to keep eating well and resting up.

As for the muscle twitches - who knows. BFS? Regardles - i am so happy to report back that there's nothing else ging on.

Thyroid Normal and Healthy.
MRI Normal and Healthy.
Muscle twitches continue to reduce.
Fatigue comes and goes - overall, improved greatly since November 2015.
Mental Fog - gone.
Migraines - gone.
Depression and Anxiety - gone.
Confusion - gone.
Hand Tremor - reduced - though with pressure and massage whole arm goes numb - definitely some twisted muscles/pinched nerves - needs work.Hand tremor only postural and 70% less than last November 2015. I suspect an overall reduction in inflammation load (no gluten) helped!

Now who is to say if thats all gluten related, or whos to say its not vitamin supplmentation , better rest and slight exercise. Don't know. But my bet? Eat well and you at least cant feel worse. Who knows, you might even feel better.

Here for anyone if they have similar issues or questions about my process.

New blood test this week and ill report back when done.