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Dr no help, CRP/ESR...eye twitching.

PostPosted: November 27th, 2014, 1:46 am
by Tb12
Hi guys,
I'm a male 29 from Australia. 2 and half year twitcher, jerker, shaker, joint pain, stiffness, cramps, tongue bits, mouth bites, it's unbearable and crippling.

Brain MRI- unspecific white matter
Spinal tap- slightly elevated reading
CRK -blood work clean.
First ever emg- was suggestive of chronic denervation and asked for further studies.
Last 4 emg,s- were clean besides a few fasticulation findings.
Last neuro strength test 2 weeks ago- normal.

Question I have: my neurologist sent me for blood work recently and my ESR and CRP as well as vitamin D are all elevated but my general dr could give me very little info on this? Anyone have any insight to these markers? I'm currently waiting for voltage gate results.

Any info on those markers would be greatly appreciated?

Also does anyone have constant eye twitches in both lids? I mean constant everyday ... All day.... ??

Re: Dr no help, CRP/ESR...eye twitching.

PostPosted: November 27th, 2014, 2:13 am
by Yuliasir
HI Tb12

ESR and CPR are both markers of inflammation. If you had a flu about a 10 days before the test, they would be increased still. This is the most probable explanation, considering the weather and season.
If this is a continous process, then it may indicate you have a chronic inflammatory process.

High level of vitamin D is rather unusual for us but I do not think it has any significance uless maybe you had some overuse of fish oil or are predominantly on fish liver diet :) There are no diseased (as far as I know) associated with specifically high D vitamin level in the blood - only abuse as a supplement or in a food form. It could be a result of estrogen therapy (doubt you undergo it, especially not being informed about), in case of some anti-tuberculosis therapies etc. but most probably it is an outlier or you take too much of supplements.

Re: Dr no help, CRP/ESR...eye twitching.

PostPosted: November 27th, 2014, 2:19 am
by Tb12
Thank you so much for the reply,

I must correct myself I have low vitamin d, the other said markers are high and have been for the past 6 months maybe even longer so is that more room for concern?

Also a question that scares me about ALS and emg testing I have only ever had limbs done and never back, chest or tongue, is that a must for emg testing? After 2.5 years of twitching would something have shown on my last neuro stength test? If my limbs were clean and these twitching there am I clean of any possible ALS bulbar and limb?... Thoughts..

Re: Dr no help, CRP/ESR...eye twitching.

PostPosted: November 27th, 2014, 2:52 am
by Yuliasir
low vit D is very common for us.

consistent high markers of inflammation may indicate a need for immunologist to look on possible autoimmune conditions like RA or so. Any other signs of consistent inflammation - cough? weight loss? skin changes? etc. anyway your doctors who see oyu in person must know better what to do.

If you do not demonstrate any problems in the back or tongue, there is no point to do EMG in them.

Bulbar ALS would give you a lot of clear symptomes, from deteriorated speech to the acute need of gastrostoma for feeding. Brainstem is not a place where detreioration processes would hide for a long time - the grip is usually strong and quick...

I would rather turn the mind to RA considering your symptomes (but I am not a doctor!!!! Just a medical translator). Anyway I think Australia must have rhather good public health system so trust your doctors.

absence of any clinical weakness in 2.5 years is the best indicator that you do not have ALS.

Re: Dr no help, CRP/ESR...eye twitching.

PostPosted: November 27th, 2014, 3:14 am
by Tb12
Interesting you comment on skin changes as I have developed so many red blood spots all over my body, I am covered in them and one slight knock on my skin will break them out more as well.

Thanks for your information, besides back twitches and tongue biting, some word slurring very minimal and reflux issues I have no other bulbar signs.. And these have stayed the same in velocity over the 2 and half years they have not got worse or better, I'm guessing that's also a good sign?

I once heard that if you had any type if ALS it would show up in a limb if all the body was twitching anyway? Is that true? Have you heard that?

I do get a sore tired jaw from eating, but the eating process is as normal.

Re: Dr no help, CRP/ESR...eye twitching.

PostPosted: November 27th, 2014, 3:42 am
by Yuliasir
to be honest, I would be much more concerned about those bodywide haematomas rather than for any twitching or minor slurring issues.
definitely ALS is not what is on the diagnostic range for you ;)
Did you show them to your doctor? genrally it means that your blood has too low platelets (but this has to be seen in your general blood formula test). It may be a result of viral infection, some other diseases my also cause that, but if they are bodywide, it is better to address to doctor.

Re: Dr no help, CRP/ESR...eye twitching.

PostPosted: November 27th, 2014, 3:50 am
by Tb12
Thanks for your help and insight.

I as I'm sure many people on here do just want to hear a none ALS diagnosis and forget we could have something else. My blood work and platelets are fine and whole blood count normal. But these red dots are not normal to me especially when they flare up with when I get my blood pressure tested the machine will leave blood spots all around my arms, the dr's brush it off... But it makes me think I might have Lyme disease? Or something else...the pain my joints are in is crippling on top of that. And all my symptoms came at once.... Which memes me believe it was so etching attacking my system.. No one here will do Lyme testing tho... And I heard high CRP is normal in Lyme... And I was in America before I got sick and was biten by bed bugs or some creatures in a hotel.. Who knows? I guess we think about all this stuff... I mean it took me 2 and a half years to get a voltage gate blood test which I'm awaiting results for and no one will check for kennedys either... It sucks not having a idea what's going on.

Re: Dr no help, CRP/ESR...eye twitching.

PostPosted: November 27th, 2014, 10:21 am
by SecretAgentMan
Tb12 wrote:as I'm sure many people on here do just want to hear a none ALS diagnosis and forget we could have something else.

This is just my observation, but I believe most people say all they want is to know they don't have ALS or something else sinister, but even after repeated reassurances from their doctors they still get stuck in cycles of fear, panic, and worry. I believe it is the not knowing that eats people up. I know in my case it was not enough to hear what I didn't have. I wanted to know what I did have so that I could do something to alleviate it or reverse it. You can't fix what you do not understand is broken. From the title of your post it sounds like you are making the same or a similar realization to the one I did. My doctors were no help. I realized that despite all the advanced medical knowledge and resources at their disposal, the best they could do was rule things out. There was no magic pill and there was no surgery that they could offer me to fix what was wrong, even if they did somehow figure it out. It was my turning to holistic medicine that ended up bringing me the answers and results I had been so frantically seeking. I'd urge you to consider seeing doctors with different backgrounds since your current path is yielding no results. You will find that there are multitudes of different styles, methods, and techniques once you venture out of the pharmaceutical path, but this is a good thing. Search until you find something that works for you. Keep an open mind because if you do you will soon learn that there is much to medicine that you never knew about and never thought possible before. Its good though, because that is where the answers are that have eluded so many chronic illness sufferers. They were for me and I got my life back. I wish the same for everyone else here. Good luck!