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Old 09-06-2015, 09:57 AM #1
Tb12 Tb12 is offline
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Angry My symptoms, please help, any advice and anyone similar on this board?

Hey guys
First time on here for me, I am a 30 year old male from Melbourne Australia...

My symptoms have been ongoing for almost four years now with no diagnosis what so ever and are not stopping only getting worse.. Symptoms are as follows ..

Besides some general fatigue, the odd muscle twitch here and there this is how it all started..

The symptoms came on over 2 days, the first day i did some gardening and noticed my right hand tremoring and very weak so i stopped, the next day i played basketball and that night all hell broke lose on my body and i woke with twitches all over that lead into these symptoms..

symptoms:
1. high quantity of twitches everywhere in my body, you name it, i have twitched (still current)
2. postural tremors felt and seen as well as tremors if holding weight etc on any limb, body part (still current)
3. Proximal muscle pain and feeling of weakness
3. myclonic sleep jerks and now some electric shock type jerks whilst awake that move my body and a limb (still current)
4. GERD, heartburn, scalloped tongue, slurring of some words my th's sometimes turn to f's, tongue biting on occasion whilst eating (still current)..food getting stuck in throat and needing a extra swallow
5. extreme muscle stiffness throughout whole body, feels difficult to hold my posture most days (still current)
6. extreme muscle pain that is sporadic and all over body periodically like sharp pains or deep pain (still current)
7. tingles and ticklish itchiness that drives my crazy through out my whole body (still current)
8. a few cramps that kill or a feeling of a cramp like deep pain through out body parts (still current)
9. extreme clicking of joints with pain involved(still current)

medical history for these symptoms
1. 8 neuro visits:
2. clinical exams always fine and passed, no clinical weakness seen even tho i feel weak and am tremoring and less stable
3. 5 emgs over 2 years, first emg was suggestive of mild chronic denervation, the other 4 were completely normal and clean
4. Dismissed by rheumatologist, said I was clean
5. All endocrine issues are fine besides a low vitamin d
6. Brain MRI is fine
7. Slightly elevated spinal fluid and pseudopapildemia in my eyes


I have consistently bought up my concerns of kennedys disease but due to my CPK blood work being normal neuros won't test me for it ...not even for piece of mind..

I am usually bed ridden and I'm over it, it's so difficult to even to on or plan a future being this sick and not knowing what's going on with me at all..

I'm guessing Lyme disease is not common in australia? I have had massive break outs of red dots everywhere but dr says it's just campbell de Morgan spots ..

Any help would be greatly appreciated.. I hope we can all support each other.
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Old 09-06-2015, 03:12 PM #2
Lara Lara is offline
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Hello and welcome to the NeuroTalk Support Groups.

Were you sick with anything before this started? Flu like symptoms? If so has anyone mentioned Post Viral Syndrome?
Quote:
I'm guessing Lyme disease is not common in australia?
Lyme... Our Govt authorities have said in the past that Lyme doesn't exist here, and that the only people who could have Lyme disease are people who were overseas in certain areas and got it there, but there are some hard working GPs in some areas that believe otherwise. There is one in Bellingen in Northern NSW. . I used to have a lot saved on computer but most of the links are years old and not working so I'll try to find it and post back. Another on Sunshine Coast in Qld from memory. Found mention of one GP in Melbourne in article below and a number of others...

Added: ABC Radio National - Lyme: A Four Letter Word
That's from 2013 so some changes probably have happened since then.

Another place for info regarding Lyme Disease or Lyme like Illness is the
Karl McManus Foundation
"The KMF is a promoter of evidence-based research and
clinical practice for tick-borne diseases and an advocate
for better testing, treatment and education in Australia."

Check out the section on that site - Murdoch University Tick Research raise new questions

Edited later to add:

http://www.health.gov.au/lyme-disease
Australian Government Department of Health
Lyme Disease

I'm really sorry you're so sick and for so long. I hope you find some answers. That's an awful lot of symptoms you're experiencing. Not good.

Last edited by Lara; 09-07-2015 at 12:22 AM.
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Old 09-06-2015, 08:11 PM #3
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Hi Tb12,

I am sorry to say but I am clueless, void of any ideas, of what may be ailing you. After reading your post, I feel compelled to say how well you have outlined your symptoms and medical consults thus far. Made for easy reading.

I hope someone will respond that may provide some possible insight or ideas for you.

Sorry to hear of your suffering. Wishing you the best in your search for answers and relief.
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Old 09-06-2015, 09:58 PM #4
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Question Any Known Chemical Exposure(s)?

Hi Tb12,

Welcome to NeuroTalk!

Please make yourself at home here on any forum(s)!

I am sorry you have been challenged with a condition(s) yet unidentified by your medical caregivers. Has to be frustrating and maybe also a bit demoralizing at this point?

I had read your entry earlier today and have given your symptoms some thought.



You have mentioned "massive break outs of red dots everywhere," your doctor has identified these dots as Campbell de Morgan spots.

These are also known as Cherry Angiomas. While Cherry Angiomas are often not a sign of anything in particular, they sometimes appear in response to exposure to chemicals.

http://www.healthline.com/health/cherry-angioma#Causes3

Had you had new and/or ongoing exposure to chemicals?

I hope you find the explanations(s) for your illness and the assistance/treatment(s) needed in order to feel much better, as soon as possible.

Hope to see you around the forums here.

To our healing,
DejaVu
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Old 09-06-2015, 10:46 PM #5
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Hi Tb12

Welcome to the community - I hope that you find it as helpful and knowledgeable as I have .

I think that Lara is right about Lyme Disease - whether it or other tick-borne diseases are found here is controversial but her links are certainly worth checking out.

You mentioned Kennedy's Disease. It is an X-linked recessive disorder. It might be worth finding out if any men on the mother's side of your family have been diagnosed with it.

If so, it is worth investigating. If not, I would not worry about it.

All the best.
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Old 09-06-2015, 11:23 PM #6
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Smile Persistence Tends to Pay Off

TB12,

There are also "non-dystrophic" neuromuscular conditions in which CPK is normal and EMGs may remain "normal" for years.

Keep tracking your symptoms and continue to present to your neurologists.
Your persistence is apt to pay off. Are any of your neurologists also specialists in neuromuscular medicine?

I had many symptoms for many years. This was complicated by co-occurring conditions. My neuromuscular diagnosis never became clear, despite years of repeated testing, until I was in a rather severe neuromuscular crisis in the ER and was seen while in crisis -- with overt and serious neuromuscular dysfunction, witnessed by a very bright intern in Neuromuscular medicine.

The many symptoms/signs I had noted over many years, which had been noted in my chart for all of those years, were read by this intern and had helped him to make a case to get me into the neuromuscular clinic for further evaluations.

Please keep good notes, just like the ones you have presented here. Continue to hand copies to your doctors.

If possible, seek second opinions, as well.

I also agree with Lara and Kiwi, also look into the possibility of Lyme Disease.

I hope we can support you in your finding your path to healing.

Warmly,
DejaVu
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Old 09-07-2015, 03:39 AM #7
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Thank you so much to everyone above that has reached out and given support and advice..

Just to touch on a few questions and statements people made.

As far as being exposed to chemicals I am not sure at all, I have travelled to thailand 2 times and both times ended up with what I thought was food poisoning and was throwing up for days..

I also got sick whilst in America and had dizzy spells and stomach issues after being bitten by what I feel was bed bugs.. But don't know if anything I have experienced overseas has attributed my symptoms.

Question for kiwi about kennedys disease, I just rang my mum and she said no one male she knows has ever been diagnosed with any neurological disorder not her brother or her mums brother... Does that mean it's a definite no? ..I also have a normal CPK blood test which I hear is usually high in Kennedys disease. My concern is my and proximal weakness and gynecomastia which are both kennedys symptoms.

My neurologist has dismissed me after seeing me for year and saying he can't diagnose it and things it's not neurological..

Rheumatologist also couldn't find anything..

Endocrinologist the same..


So do I go get even more opinions again? Anyone on here from Melbourne Australia? That knows good gp's and specialists?
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Old 09-07-2015, 05:18 AM #8
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Hi Tb12

"Question for kiwi about kennedys disease, I just rang my mum and she said no one male she knows has ever been diagnosed with any neurological disorder not her brother or her mums brother... Does that mean it's a definite no? ..I also have a normal CPK blood test which I hear is usually high in Kennedys disease. My concern is my and proximal weakness and gynecomastia which are both kennedys symptoms."

Writing as a biomedical scientist, not a health professional, I think that what your Mum has told you means that you can rule out Kennedy's Disease.

The fact that your CPK level is in the normal range supports this - elevated levels of CPK can indicate Kennedy's Disease but many other things as well.

So, probably a "definite no". You might find this Victoria-based link helpful; http://www.betterhealth.vic.gov.au/b...'s_disease .

I hope that you get answers soon.
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Old 09-07-2015, 06:29 AM #9
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Kiwi,
Thank you so much for your support and knowledge. You have given me more information than my gp and neuros... One GP said how do you spell it and didn't even know what is was and my neuros didn't even go into detail about it..

I didn't know the CPk blood test was actually used as a pretty decent marker for it's potential like that information states coupled with the fact that no one in my mothers family has it is a great sign..

Even tho it mimicks all my symptoms I must remember they can be symptoms of anything neurological and most symptoms I would assume cross over?..

The neuros have ruled out ALS due to my last 3 emg's being clean and after 3.5 years I should have a complete tell tail ALS sign as that is no joke of a diagnosis...

Have you ever heard of Benign Fasiculation syndrome? Or maybe I should look into fibromyalgia and of course Lyme..

My big concerns besides the non stop body wide twitches are the postural and distal tremors when the muscles are put under stress and the joint pain in all my joints is on a scale of 10 constantly and they feel so unstable ..

This board is a great support and help
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Old 09-07-2015, 05:30 PM #10
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Hi againTb12,

These are just my personal thoughts after reading all your posts again...

If I was in your position, and putting all your symptoms in a list together, I'd be seeking out the very best Endocrinologist that is available in Victoria.

Not sure how often you have seen one or how long ago you saw an Endocrinologist and what they had to say to you. Personally I'd be seeing one of them rather than a Neuro considering some of your symptoms.

I can't see how some of your symptoms could be caused by Lyme or Lyme like disease, but I'm not a doctor.

Gynecomastia for example. I'm not understanding how they could tell you that
<<All endocrine issues are fine besides a low vitamin d>>

Plus this

<<Slightly elevated spinal fluid and pseudopapildemia in my eyes>>
How have all these doctors explained those symptoms to you?

It's your health and it sounds seriously debilitating and you really need to find out what is going on. This person below may not treat patients himself I'm not sure, but it might be worth contacting them even if it's for other leads. Some are more approachable than others, but I'd go for it myself.

http://www.findanexpert.unimelb.edu....ay/person15807
Professor Jeffrey Zajac

You could also check out
Austin Health
http://www.austin.org.au/departments/
or some of the Links at
http://www.melbournebraincentre.edu.au/

Ask for help.

Last edited by Lara; 09-07-2015 at 05:53 PM.
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