diagnosis in time to prevent or stop permanent neurological damage

[laborlawchick]

I am 47, female, among the numerous symptoms that have progressively become worse and new ones most recently I have been dealing with, first - short term memory loss which progressed to immediate memory loss with "dissolving thoughts when I am thinking on a subject, I have a split second of knowing it is going then it just goes. when typing, I now miss keys, first numbers were hard to remember now that seems better but now I am combining names like doctors, I will mix the first name of one with the last name of the other.

I am not having aggresive treatment as they cannot agree on a diagnosis.  MS and/or SLE or Sjogren's with high cholesterol, hypothyroidism and a 5x5x4 nodule. Lots of auto-immune symptoms of course.

I am very concerned that neurological symptoms will cause permanent nerve damage.  How long does it take for temporary conditions to become permanent?

Thank you for any help,

Carly

[Deb61]

What kinds of neurological tests have you had?  Have you been to a neurologist?  I had a complicated medical history, too.  I was lucky to find a good neuro who is an expert diagnostician.  

I have several questions for you.  I may not be able to help you much, as I'm not a doctor, but there's several people who are experienced limbolanders (like myself--but finally diagnosed after many years in Limboland) that have been h*ll trying to get a diagnosis and researched and researched . . .

I assume you've had an ANA test.  Is the titer high?  Have you had skin rashes when exposed to sunlight?  Have you had a lip biopsy to rule out Sjogren's?  

Do you have hypothyroidism?  I have this, and when it's not controlled, it can cause mental/memory issues, muscle aches, etc.  

What other symptoms do you have? Do you have joint pain?  Do you have Raynaud's?  Do you have vision problems?  Do you have numbness and/or tingling?  Stiff fingers?  Pain anywhere?  Trouble breathing?  

I know how frustrating it is not knowing what it is that's causing all your health issues, and scary when you can't remember things, etc.   You may not have MS (or you may), but many of us can certainly related on having lots of symptoms with no firm diagnosis. Whatever this turns out to be, we'll be here for you.  

Deb

[Lulu54]

Hi LLC, and welcome to the community here.  Your frustration is understandable - we would like to havea clear diagnosis and get on with agressive treatment but that isn't always possible.

The doctors need to be pretty sure of what they are dealing with before starting drug therapy.  And you want them to be treating the right disease.

Disease modifying treatment, DMT, for MS does not offer a cure.  What these drugs do is attempt to slow our immune responses from further attacks on our myelin.  The DMT's slow the rate of relapse but don't cure the MS.  

The symptoms, numbness, parasthesias, memory problems, etc., are all treated by other drugs - some more successful than others.  


Good luck with the process and I hope you will stay around to learn more.

wishing you well,
Lulu

[HVAC]

I can understand your fear frustration. It took me two years for a diagnosis and to start treatment. Unfortunately it takes awhile for Doctor's to rule things out. I assume you have had all kinds of blood work.  Also there is a misconception that once Doctor's know what is wrong they can fix things. Often they can help manage these diseases but you still progress. For me things are the same except I know it is MS and I give myself shots which do little for symptoms, but hopefully will slow the progression.

Hang in there,
Alex