Negative brain scan

[Meme586]

I am a 55 year old woman who has had all the symptoms of MS for the last 5 years except the lesions on the MRI Scans.  Five years ago I was treated for optic neuritis, but was told to have a wait and see before a final diagnosis of MS.  I tolerated the symptoms until the last year and the have gotten worse, again The MRI scans I have show no brain lesions.  Again I get lets wait and see.  I am getting to old and to tired of these answers, can someone please tell me what my next step should be?

[Lulu54]

That's a good start.  You do know this is a process of elimination and they have to make sure that you have nothing else - that's why the extensive blood work.  They should be looking at Lyme, Lupus, RA, and all sorts of other diseases and deficiencies.  

I'm glad your doctor is listening to you - that was a good line to use.  I may still end up in a wheelchair, but at least I have a fighting chance being dx'd and on a DMD.  Eveyrone deserves that chance too.

Keep in touch, ok?

my best,
Lulu

[Meme586]

Hi  Just got back from doctor..they have scheduled the MRI for cervical and thoracic on Friday,,Also a lot of blood work was done.  I just told my family docotr, we have to get up on this because I did not want to be a 60 year old lady in a wheel chair and find out it could have been prevented.  She highly agrees and is ordering tests for every thing.  Thank you for your suggestions...Take Care and God Bless

Meme

[Lulu54]

Hi Meme,
I'm glad you found it useful to be here.  I hope you will come through often and share you path with us.

my best,
Lulu

[Meme586]

Thank you for all of your information.  My cardiologist knows about everything and I go for echo readings from him.  You all have been so nice about listening to my "gripes" I really appreciate it.  I am sure I will have lots more questions as things go on. By the way wanted to let you know my name is Mary, my two sweet grandbabbies call me "Meme" so I thought I would use that name.  Write again soon...THank You  All

[Lulu54]

I have low bp too - normal for me is 90/60.  when it dips I get very tired feeling and dizziness does sometimes occur.  The blood pressure is a totally different category than our MS, in my understanding.  Except things like pain, fatigue, and other MS stuff can stress our bodies and cause a change i nour BP.  How about that for a non-answer?

The thick speech would be a byproduct of something cardio happening - be sure your cardio is aware of the dips in pressure.  The 149/85 is too high.  You want to be in the range of 120/80.  Please don't mess with your heart - we only have one and it only takes one skipped beat to set off an ugly chain reaction.

be well,
Lulu

[Meme586]

Thanks for the info about the spinal MRI..I am going to my GP in two days and will get her to schedule.  She seems to havre helped me more than anyone.  I have another question.  Does your blood pressure ever flucuate?  I am not on any kind of blood pressure medicine, but some days my pressure goes nuts.  For example(and this happens quite a bit) Saturday, I got up a little earlier than usual, thought I felt pretty good.  I was eating my cereal and my husband walked by and asked me a quesiton.  I guess the answer did not sound right, so he asked, why in the world fo you sound so "thick tongued?"  He said I sounded as if I had taken some medicine that made me"dizzy'.  I answered of course not I do not take meds until after I eat...My blood  pressure was 77 over 48, It only went up to 92 over 53 for the whole day,  It fluctuated up & down like that all day.  After supper that evening I said I am feeling better, we took my pressure again and it was 149 over 85....Like I said this happens often and on those days with the low pressure I stay more sleepy than others.  ...Got any ideas...My GP does not know why, my cardiologist said it was probably thyroid related(had my thyroid out last Sptember), but meds are aorking fine for that...Nero Doctor said he does not know..so again I just go with the flow and on those days hope I don;t go to sleep and not wake up!!(OH goodness, should not have said that....) Thanks

[meg321]

I can relate to you so much, i too waited 6 yrs for a dx.  Mine started with a vertigo attack and i am still dizzy 24/7 since that attack.

But seeing a good specialist is so worth it, i finally went to UCSF and had my dx in 4 months.  Everything is better quality there, machines and Dr's.

I had also seen a neurologist a few years back and all he said was that i was too old.
That is so not true and unbelievable that he would even think so.  I was dx'd at 64 and had symptoms for years that i just dismissed. But i had a good life for a long time and i plan on having more.

keeps us posted...

hugs, meg

[Lulu54]

Hey Meme,
I was meaning a spinal MRI series and not the dreaded spinal tap.  Have they imaged your spine - particularly the cervical and thoracic series?

So you were in the Tri_care system?   That explains a lot! LOL  Sorry, I have several friends with young families in the Air Force and I know too much about how they are treated when it comes to medical care.  Take a number in the clinic and wait - maybe you'll be lucky and see the same doctor twice.  

I hope you'll stick around here - we have quite a few people like you who have no dx - affectionately called in limboland.  In fact, over half of our community is in limbo, so they will certainly be able to identify with what you are going through.


be well,
Lulu

[Meme586]

Thanks for your answer.  Yes I have had at least four spinal tests in the last five years.  The last one was awful(gave me the spinal headache!!!) None of them showed anything either. Right now I am going through the "brain fog". keft foot dropsy, muscle pain and leg weakness, and the most awful vertigo...The nerologist did anoher MRI and again no lesions....Anser    Use this MRI as a base line and wait and see for another six months...(Same answer I have had for last almost five years).  I have seen several different neurologists(husband was in militarysaw military doctors until two years).  Now I am seeing another nerurologist that is not military. I am going to keep on going as everyone says....Life is to short and I have way too much to go on for to give up..Have a good Day...    

[Lulu54]

Oh, and I forgot to add, several of us were dx'd in our 50's, including me just last year.  Don't let your age be a factor when it comes to your doctor's thinking.

[Lulu54]

Hi Meme and welcome to the MedHelp MS forum.  This is a great community and I hope you will stick around and share.  There's a few red flags in your post here that make me want to know more.

What strength MRI was used for your scans?  A 3T would be the best strength to pick up lesions that are harder to see.

You mention a brain MRI - but was a spinal series also done? You could have spinal lesions and no brain lesions.

Are you seeing a neurologist?  Even better yet, are you seeing a neuro who specializes in MS?  This is such a hard disease to diagnose, the more specialized of a doctor you can reach, usually the better.

Lesions don't always show on brain MRI's for a variety of reasons.  Some MS patients never have a positive MRI, but nonetheless have MS.

MS used to be dx'd without MRI's before that technology became available.  A confident neuro will not be afraid to dx MS based on the clinical symptoms alone.  

If you are satisfied with your neuro, please have the conversation with the doctor about starting treatment even though your MRI is negative.  The FDA has approved several of the drugs for use at the first sign of MS without satisfiying all of the McDonald criteria.

Again, welcome and I hope you will come back  - we will be happy to guide you through this process as best as we know how.

my best,
Lulu