Multiple Sclerosis Community
9.18k Members
Avatar universal

curve ball

Won't post my history; it's an endless story.  At age 30, I was diagnosed with optic neuritis.  My vision is 20/40 in that eye presently.  No additional episodes.  At age 35, I was hospitalized with myocarditis.  My refraction coefficient has been low, yet within normal ranges.  Recently, I've had an episode of psoriasis: on both shins, and a nerve conductivity test for pain in my right hand: diagnosis is carpal tunnel.  Negative HIV.  Ultimately, I have an inflammatory disease, but I cannot ascertain the link between myocarditis and optic neuritis; it's a curve ball.  Is there a correlation here, or have I hit the medical lottery, sadly enough???  I'm posting this because my neuro-opthamalogist told me, at age thirity, that he would not diagnose me with MS, but he explained, "If I do the lumbar, you'll never get health insurance!"  Yet, myocarditis does not fit the profile, and I am having multiple neurological episodes (i.e. numbness in my right leg, numbness in my hand, etc.).  I don"t anticipate an answer, but welcome comments.
9 Responses
572651 tn?1531002957
Hi and welcome.   I'm not a medical expert so I won't comment on your symptoms.  However, a glaring omission jumps out at me - have you been seen by a neurologist or just the opthamologist?  

It would be irresponsible for any doctor to recognize/suspect that you have MS and not follow through with  tests and a recomendation for treatment that could possibly slow the progression into more serious problems for you.  

Insurance is an issue for almost the whole world at this point - getting it, affording it, keeping it.... should that alone determine whether you know what is really going on with your body?  

I hope you will come back often and join us in our conversations.  
Be well, Lulu
Avatar universal
I am grateful for your thoughtful response.  For twelve years, I've lived with this "off the cuff" diagnosis.  Although I've had several nerve conductivity tests, I've never seen the actual neurologist; just an after the fact synopsis of the technician's results; or an MRI that shows nothing.  I guess I've been afraid.  Your point is not only well-taken, but also, logical:  go to the source; divulge my symptoms, get the answer.  I will schedule an appointment with the neurologist.  Thank you for your response.

572651 tn?1531002957
I can hear the chuckles behind us now as others read "go to the source; divulge my symptoms, get the answer,"  That's how my DX went but for most here it is much more lengthy a process than that.  Getting a dx for MS can be a challenge.  

At the top of this page you will see our community's health pges.  You can go there and read about getting a diagnosis, and all sorts of other interesting MS topics.

I hope you will keep us posted on your progress and good luck,
198419 tn?1360245956
Hi there, welcome.

You bring up ON and it's a strong reminder to us that we desperately need a health page dedicated to this topic exclusively.  We've discussed it many times here on our forum.

I just recently read a finding which was authored by the Optic Neuritis Study Group.  This study discussed the risk of developing multiple sclerosis after optic neuritis and the results showed that the cumulative probability of developing MS by 15 years after onset of optic neuritis was 50% and was strongly related to the presence of lesions on a baseline non-contrast-enhanced magnetic resonance imaging (MRI) of the brain.  

So, you mention your brain MRI did not reveal anything, and it's just a guess, but maybe this is why no further testing was ordered.  It's just hard to say at this point.  

This recent statistic I state here, is higher than the one we are familiar with.  In the past, we've quoted 40% which is very substantial.  Of course you could look on the bright side, and see 60 or 50% of patients will not go on to develop MS, especially if they are not presenting with symptoms clinically, and their MRIs are clear.  This would definitely place those cases in the low risk category.  

If I've misquoted something here, someone please correct me.  This was my interpretation of the write-up.  I intend on putting it on our favorite links for all the read.

I'm glad you are looking out for yourself, Delanosboy.  I hope you do get further testing and a thorough exam from a Neuro so you don't worry and so you have more answers as to what is going on.

Hope you enjoy it here and again, welcome aboard!

Avatar universal
Unfortunately, I realize this difficulty.  When I was diagnosed with peripheral neuropathy in my right leg- I'd like to quote the clinical term, but Latin is foreign to me (Ha)- I had an MRI w/wo contrast in Feb.  It was normal.  I genuinely thought that I'd have lesions, and I could get on with it.

I've had a battery of tests, but no lumbar.  I have an appointment with the neurologist next week to discuss the finding of carpel tunnel and will go through my medical history, once again, to attempt to find the answer.  I've grown painfully tired of discussing anxiety, myopathy, neuritis, arthritis, psoriasis, and the beat goes on... with physicians.  

I've read through many posts, and this is a thoughtful, well-informed group.  Regardless of the outcome of my continued search, I am grateful...

572651 tn?1531002957
Just a thought - have you prepared a written timeline to give to the neurologist along with a summary of tests you have been through and already eliminated?  I had a lengthy list of what my symptoms WEREN'T when I first saw my neuro.  I was able to bypass a lot of repet tests because of that list of previous tests and guesses by other doctors.

At the moment of this appt it is easy to forget critical things you might want to share - that's why we recommend writing it down.

Stay in touch, Lulu
429700 tn?1308011423
Your symptoms sound more like lupus (with the myocarditis, arthritis, peripheral neuropathy, myopathy, etc.)  ON can also be found in lupus:


However, it is possible to have more than one autoimmune disorder.  Many people do.  

147426 tn?1317269232
Well, Deb beat me to it, darn it.  Hearing of myocarditis and optic neuritis make me think and autoimmune inflammatory disease like lupus or one of it's kissin cousins.  In lupus if it has an "itis" on it you can get it - cerebritis, uveitis, pleuritis, nephritis, myocarditis, pericarditis, arhtritis - I bore myself...)

Psoriasis is also an autoimmune disorder that can cause severe arthritis but is not, to my knowledge associated with myocarditis.  It has be associated with a cardiac valvulitis (inflammation of the heart valves), I think.

Did they determine the cause of your myocarditis?  Was it viral?  

If you are the beneficiary of a double whammy in having two nasty, but unrelated medical disasters, then you have found the right place to be.  Several of us hold Dual-Diagnoses with our MS.

Welcome again.  We may need to hear more about what you have gone through.  

Avatar universal
I would almost put money on the fact that you have Lyme, and that it is chronic and neurological.  If you have had negative tests for it, do not rule it out -- most tests are inaccurate.  The symptoms you describe such as optic neuritis, psoriasis, arthritis, anxiety, and peripheral neuropathy are all Lyme symptoms, and Lyme is known to cause myocarditis.  You need to get to a Lyme literate doctor.  Peruse some Lyme sites so that you can find names of doctors in your area who know what they are doing, and get tested for Lyme by Western blot through Igenex.  Treatment once it is neurological takes a long time with antibiotics but symptoms do improve over time.  
Have an Answer?
Top Neurology Answerers
987762 tn?1331031553
5265383 tn?1483811956
1756321 tn?1547098925
Queensland, Australia
1780921 tn?1499305393
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease