Update on condition

BFS Online Support Group

Moderators: JohnV, Arron, garym

Update on condition

Postby Watereddown on June 21st, 2014, 4:17 am

Hey old friends,

I haven't been around here in a while so i thought I would share some updates.

In 3 weeks, it marks the 1 year anniversary for me when all the crazy neurological stuff began. To be honest, I never thought I would make it this far.

I was able to see my sixth (that's right, 6th!) neurologist last month, and he graciously agreed to order follow up MRI's to test for MS, which is what I have been worried about the most since many of symptoms are more paresthesia related, although my muscles twitch 24/7.

The second round of MRI's came back normal once again. The MRI's were taken 8 months apart from one another. To be honest, I was kind of surprised, considering how my symptoms have been exceptionally revved up once the hot weather has rolled around. I've been feeling light headed/dizzy/foggy, and i also have been fighting the tingling sensations in the legs and hands.

As for the twitches, I only let them bother me for about a week. Now, I've learned to live with them. I'm 100% adjusted and am used to them. I see them as a mere annoyance than anything else.

Once again, like all of you, I was told by my neuro's that I had BFS. This was about a year ago, and so far, all is just about the same. Of course, being the hypochondriac that I am, I'm still not convinced I'm out of the woods in terms of MS, even with 2 clean brain scans. I guess all we can do is keep treading at this point... :roll:
Watereddown
Senior Member
Senior Member
 
Posts: 72
Joined: August 13th, 2013, 2:42 am

Re: Update on condition

Postby trustme78 on June 21st, 2014, 12:38 pm

Hi,
we are kind of in the same boat here (see my other thread). My symptoms are more paresthesia related as well (burning sensation that comes and goes and travels around my body). Actually I only started to twitch after I developed a severe MS related anxiety. My neurologist, actually several, told me that based on the clean MRI scans and lack of severe MS related symptoms I need to accept that I don't have it. Like you I find myself questioning these results and ask myself if I belong to this famous 5% who have a clean MRI and still have MS. I came to the conclusion that I need to work on my acceptance and not live with the fear of being sick. Because in the end it consumes my life, maybe not as extreme as an actual illness would. But we need to do that for our families and friends as well.

Do we have people on these boards who have been (correctly) diagnosed with MS after a clean MRI? I couldn't find any in the archives and I did extensive reading over the past weeks. But maybe people who are longer here than me can answer this question.
trustme78
Senior Member
Senior Member
 
Posts: 66
Joined: May 31st, 2014, 12:11 pm

Re: Update on condition

Postby johnnythejet on June 21st, 2014, 6:22 pm

trustme78 wrote:Do we have people on these boards who have been (correctly) diagnosed with MS after a clean MRI? I couldn't find any in the archives and I did extensive reading over the past weeks.

You can stop looking for those cases in the archives...you won't find any.

After a year of this stuff, being cleared by one or SIX neurologists, and countless unnecessary tests, one should be 100% assured that every second, minute, hour, and year spent worrying about a sinister disease is 100% wasted time that will never be regained.
User avatar
johnnythejet
Saint
Saint
 
Posts: 1602
Joined: September 15th, 2005, 2:36 pm
Location: Kansas

Re: Update on condition

Postby Watereddown on June 21st, 2014, 7:45 pm

johnnythejet wrote:
trustme78 wrote:Do we have people on these boards who have been (correctly) diagnosed with MS after a clean MRI? I couldn't find any in the archives and I did extensive reading over the past weeks.

You can stop looking for those cases in the archives...you won't find any.

After a year of this stuff, being cleared by one or SIX neurologists, and countless unnecessary tests, one should be 100% assured that every second, minute, hour, and year spent worrying about a sinister disease is 100% wasted time that will never be regained.


Whats up johnny! I know, it's ridiculous. Im definitely not as worried now as I was before, just more annoyed than anything else that many of these symptoms just don't want to go away
Watereddown
Senior Member
Senior Member
 
Posts: 72
Joined: August 13th, 2013, 2:42 am

Re: Update on condition

Postby Yuliasir on June 22nd, 2014, 12:08 am

I believe those famous 5 % with clean MRI and still MS diagnosis could be easily explained by the fact that MRI is a relatively new method and moreover it is still under development.

I personally know a guy who had 'clean' low sections number MRI and was deaf due to neurinoma. This tumour was properly detected only on MRI made on the device with the higher resolution, so he could have a sugrey only after that high res MRI.

but in your case several MRIs are clean and you do not have clinical signs of MS, therefore just understand that you CAN NOT be diagnosed with MS, regardless from your fears and willing to have a diagnosis.

I had translated European Neurological associations for MS diagnostics. To be finally diagnosed you need a combination of symptomes with a certain pattern (long lasting, of certain severity, in a certain well known locations like eye or limbs), then you need possibly specific antibodies in the spinal tap (which is less significant), and for definite diagnosis of MS not something else you need specific lesions on MRI clearly prorgessing in time and space, so if those people had celan MRI - it may be possible once, but if the y had clinical signs of neuritis etc. - then their MRIs should not stay clean forever. MS is a myelin dergadation disease and this SHOULD BE SEEN clinically on MRI. And 8 months are more than enough to see if there are any lesions becasue usually the time space between two diagnostic MRIs is about 3 months. I know a person who was diagnosed on the basis of few weeks span MRIs - in her case MS was clealry evident. She is Ok now by the way due to treatment :)))
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Update on condition

Postby Watereddown on June 22nd, 2014, 10:56 am

Yuliasir wrote:I believe those famous 5 % with clean MRI and still MS diagnosis could be easily explained by the fact that MRI is a relatively new method and moreover it is still under development.

I personally know a guy who had 'clean' low sections number MRI and was deaf due to neurinoma. This tumour was properly detected only on MRI made on the device with the higher resolution, so he could have a sugrey only after that high res MRI.

but in your case several MRIs are clean and you do not have clinical signs of MS, therefore just understand that you CAN NOT be diagnosed with MS, regardless from your fears and willing to have a diagnosis.

I had translated European Neurological associations for MS diagnostics. To be finally diagnosed you need a combination of symptomes with a certain pattern (long lasting, of certain severity, in a certain well known locations like eye or limbs), then you need possibly specific antibodies in the spinal tap (which is less significant), and for definite diagnosis of MS not something else you need specific lesions on MRI clearly prorgessing in time and space, so if those people had celan MRI - it may be possible once, but if the y had clinical signs of neuritis etc. - then their MRIs should not stay clean forever. MS is a myelin dergadation disease and this SHOULD BE SEEN clinically on MRI. And 8 months are more than enough to see if there are any lesions becasue usually the time space between two diagnostic MRIs is about 3 months. I know a person who was diagnosed on the basis of few weeks span MRIs - in her case MS was clealry evident. She is Ok now by the way due to treatment :)))


Thanks so much for the detailed reply yulia. The reason why I still have many doubts is because how I feel day to day. I wish I can just ignore everything, but there's always that voice in my head telling me there's something wrong. I know MRI's are very powerful diagnostic tools, but at the same time, they can't rule it out 100%. Like I said before, only time will tell in my case, because no matter what the neuro's or test results say, I still second guess them.
Watereddown
Senior Member
Senior Member
 
Posts: 72
Joined: August 13th, 2013, 2:42 am

Re: Update on condition

Postby Yuliasir on June 22nd, 2014, 12:28 pm

I hope time can tell you that you are safe... however we have here fellows who suffer for well over 5 years and still have doubts they did not developing some rearest of the rearest ALS case...

I would not say much about trusting the voice in the head, but I would just remind such voices could be heavily misleading. I do not speak about psychotic voices, but just remember how often we see that a person can not do something easily achieveble (like make a phone call) just becasue of voice in the head saying - YOU ARE MISERABLE! neurotic voices are highly misleading too...
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Update on condition

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: Bing [Bot], Nuti and 4 guests