advertisement
Reply
 
Thread Tools Display Modes
Old 01-31-2013, 02:07 PM #1
wild_cat's Avatar
wild_cat wild_cat is offline
Junior Member
 
Join Date: Oct 2012
Posts: 84
10 yr Member
wild_cat wild_cat is offline
Junior Member
wild_cat's Avatar
 
Join Date: Oct 2012
Posts: 84
10 yr Member
Default A naive question from an exasperated patient!

Hello everybody.

I have been over on the MG forum for a while talking about chronic undiagnosed symptoms including slurred speech, walking difficulties with frequent falls, blurred vision, difficulty supporting the weight of my head, difficulty chewing and swallowing and difficulties breathing. To cut a long story short I have been thoroughly tested and the doctors can't find anything and I have been told my illness is 'functional'.

I had two MRIs just over a year apart at the beginning of my last major flare up in 2010/2011 and between the two appeared a 'high signal white dot' on the right frontal lobe of my brain. I was told this is an aging spot and everybody gets them. However, I have since come across conflicting views about this including one GP who told me this could indicate MS.

Can you reassure me this is a normal aging spot and that I do not need to recall for another MRI? I am frequently mistaken for having MS. Of course, I am also very exasperated at not having a diagnosis or any treatment plan.

Thank you very much for reading and putting up with such an ignorant question - I'm sure you must get this one all the time!

wild_cat
wild_cat is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (01-31-2013), tkrik (01-31-2013)

advertisement
Old 01-31-2013, 02:35 PM #2
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

Hello and welcome Wildcat.

First of all, I would not only get another reading of your MRI or
a new one but, while you're at it, a new Doc..
Is your Doc a Neuro?

Good luck and please let us know what happens.
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
tkrik (01-31-2013), wild_cat (01-31-2013)
Old 01-31-2013, 03:10 PM #3
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

How frustrating for you. I'm sorry you are experiencing all of this and yet don't have any answers from you physician(s).

First of all, it is not an ignorant question in any way.

I can't reassure you that the spot that was seen is from normal aging. I have never heard of this occurring but I'm a patient not a medical professional. I do know that lesions can happen in other diseases, from viruses, migraines, and head traumas.

You mentioned that you hang out in the MG forum. Did the doctor(s) rule out MG? What types of specialists have you seen?

Sometimes it takes a long time to get a diagnosis of not only MS but other conditions as well. Something isn't quite right and from what you have told us so far, IMO, it doesn't sound "functional."

Hang in there and let us know what happens and how you are doing.
tkrik is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (01-31-2013), wild_cat (01-31-2013)
Old 01-31-2013, 03:34 PM #4
wild_cat's Avatar
wild_cat wild_cat is offline
Junior Member
 
Join Date: Oct 2012
Posts: 84
10 yr Member
wild_cat wild_cat is offline
Junior Member
wild_cat's Avatar
 
Join Date: Oct 2012
Posts: 84
10 yr Member
Default

Thank you for your responses! It means so much to have your support!

I'm not under the care of a neuro at the moment, but I have now seen four. I have also seen three cardiologists, as my heart range is very wide (30s-180+). They recently gave me an EMG and pulmonary function testing. The EMG was normal even though the test itself made my limbs go into a violent uncontrollable spasm. They told me the pulmonary function test results are 'uninterpretable' and will not redo them.

Up until recently it seemed possible my symptoms may fit an seronegative MG pattern. But I do get other symptoms, such as muscle jerking that doesn't seem to fit. More recently I started to get bouts of uncontrollable crying which is completely uncharacteristic for me. It comes on suddenly for no reason and is a really loud sort of crying, not the sort I would do if I were really crying. Then it stops suddenly and I feel fine again. The last time this happened my eyes went crossed and I couldn't stop them doing it and it was very uncomfortable. I'm convinced that whatever this is is something to do with all the other symptoms.

I find the fact that this happens really worrying. Since it started no physician has been able to take my bp because I get really bad carpopedal spasm and then my face goes into a grimace...it's just horrible as I have no control over it at all. I don't understand what's happening to me and why my body is behaving this way.
wild_cat is offline   Reply With QuoteReply With Quote
Old 01-31-2013, 03:55 PM #5
tkrik's Avatar
tkrik tkrik is offline
Wise Elder
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
tkrik tkrik is offline
Wise Elder
tkrik's Avatar
 
Join Date: Jan 2008
Posts: 8,403
15 yr Member
Default

Maybe asking for a referral to an MS specialist would be helpful. In the mean time, gather up all your medical records from all the places you have been and for all the tests that you have had done. This is not only for your records but to give a copy to any specialist you see. Also, if you can, keep a log of your symptoms.

I am sure the physicians must know something is up. The next time you go in to the dr. bring someone with you, someone who has seen some of the symptoms you are experiencing. Sometimes those close to us see more than we think. At least that has been my experience.
tkrik is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (01-31-2013), wild_cat (01-31-2013)
Old 01-31-2013, 07:16 PM #6
TheSleeper's Avatar
TheSleeper TheSleeper is offline
Member
 
Join Date: Jan 2008
Location: About 35 miles southwest of Cleveland Ohio
Posts: 499
15 yr Member
TheSleeper TheSleeper is offline
Member
TheSleeper's Avatar
 
Join Date: Jan 2008
Location: About 35 miles southwest of Cleveland Ohio
Posts: 499
15 yr Member
Default

Have you seen your actual MRI reports? My first neuro mistook the abnormalities in mine to be small strokes, on the MRI report it stated clearly " given the location a demyelinating process is not entirely excluded "

A repeat MRI of the brain later stated they were " consistent with a clinical history of MS "
__________________
ditched the witch
.
TheSleeper is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (01-31-2013), wild_cat (02-01-2013)
Old 01-31-2013, 10:53 PM #7
Sparky10's Avatar
Sparky10 Sparky10 is offline
Senior Member
 
Join Date: Sep 2006
Location: Iowa
Posts: 1,094
15 yr Member
Sparky10 Sparky10 is offline
Senior Member
Sparky10's Avatar
 
Join Date: Sep 2006
Location: Iowa
Posts: 1,094
15 yr Member
Default

Quote:
Originally Posted by wild_cat View Post
More recently I started to get bouts of uncontrollable crying which is completely uncharacteristic for me. It comes on suddenly for no reason and is a really loud sort of crying, not the sort I would do if I were really crying. Then it stops suddenly and I feel fine again.
Welcome, wild_cat! What kind of critter is your avatar?

About the crying - look into PBA (Pseudobulbar Affect). I'm not saying it is difinitive of MS (nothing is) but many of us experience it. It is a treatable symptom.

If you need financial assistance with another MRI, check out this MS Association of America program: http://www.msassociation.org/programs/mri/.

Good luck to you!

Oh...one of my very early symptoms (assumed, not documented, years before anything was wrong enough to seek treatment) was that, one day only, my neck would not support my head. Interesting, and not fun.
__________________
RRMS, diagnosed '00

Everything will be alright in the end. If it's not alright, it's not yet the end.
Sparky10 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (02-01-2013), SallyC (02-01-2013), wild_cat (02-01-2013)
Old 02-02-2013, 05:07 AM #8
wild_cat's Avatar
wild_cat wild_cat is offline
Junior Member
 
Join Date: Oct 2012
Posts: 84
10 yr Member
wild_cat wild_cat is offline
Junior Member
wild_cat's Avatar
 
Join Date: Oct 2012
Posts: 84
10 yr Member
Default

Thank you so much for your replies!

Sparky, my avatar is the Scottish wild cat -- they're quite rare and timid animals so it's not often you'd see them. I'm so relieved to hear that the crying is a symptom with these kind of things -- I thought I might actually just be losing my mind completely!!!

I am based in the UK so I'm not sure whether there would be any equivalent financial support for another MRI. My GP won't re-refer me for anything now. They said they will not do any further tests.

I have another question though: Do symptoms fluctuate with MS? My speech can be different from one minute to the next. It's worst when I'm standing up, moving about or doing anything physical and generally returns to normal after a sitting a while with my feet raised. Does that sound at all familiar or not?
wild_cat is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (02-02-2013)
Old 02-02-2013, 09:09 AM #9
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
Default

Have you been checked for pseudobulbar palsy?
4-eyes is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (02-02-2013), wild_cat (02-03-2013)
Old 02-03-2013, 09:56 AM #10
Sparky10's Avatar
Sparky10 Sparky10 is offline
Senior Member
 
Join Date: Sep 2006
Location: Iowa
Posts: 1,094
15 yr Member
Sparky10 Sparky10 is offline
Senior Member
Sparky10's Avatar
 
Join Date: Sep 2006
Location: Iowa
Posts: 1,094
15 yr Member
Default

Oh boy, do symptoms fluctuate! Oh yeah. They can. Doesn't happen to everyone but to those who experience it, it's a roller coaster.
__________________
RRMS, diagnosed '00

Everything will be alright in the end. If it's not alright, it's not yet the end.
Sparky10 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
wild_cat (02-03-2013)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Not naive, but not paranoid yet Blessings2You Multiple Sclerosis 18 04-17-2012 11:11 AM
exasperated...a little by a new exacerbation and steroid treatments!!!! volada Multiple Sclerosis 20 09-22-2011 09:19 AM
research question - patient theory paula_w Parkinson's Disease 1 09-08-2011 01:40 AM


All times are GMT -5. The time now is 01:41 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.