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667078 tn?1316000935

Had my six month follow up

Hi everyone,
   I had my six month follow up 1T MRI with contrast and meeting with the MS Specialist. The MRI were almost identical, I guess that is good. Only two lesions. He said the one lesion and my growing symptoms point to MS but I don't meet the criteria.The next step is an LP but he says it has only 30% chance of showing anything. I am doing it even though that is the one test I am scared to death of. If it does show something then he may start treating me if not I wait another six months or a year and repeat the tests. He said my reflexes were a little off but over all I did fine on all the exam room tests. May be its because my brain has slowed down a lot in the last two years but I don't really understand much of this neurological stuff. I just keep hoping the Doctors will say there is nothing wrong you don't have to come back.  I have  shock like pain all over my body I did not have six months ago though it bounces around so I can stand it. My psychiatrist says what is happening to my thinking over the last two years is not psychiatric or caused by the medications. I started out a genius, now people laugh at me because words don't come out right and I lose everything. Yesterday I had a clear day and found all kinds of things I had misplaced and could use the bank machine. I was so happy. I realize I am very lucky to still have so much of my health.
                  Alex
5 Responses
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428506 tn?1296557399
Hi, I don't think we've "met," I'm a (relatively) old member of the forum who ultimately got diagnosed with Lyme.

I think you are wise to appreciate that health that you have, and to keep it in perspective.  However, that does not mean settling for non-answers.

What good would it do you for a neuro to tell you "nothing is wrong" if you were still in pain/discomfort?  YOU are the best judge as to whether something is wrong, not some chump in a white coat (no offense to Quix, but some doctors boil my blood).

In my case, I had to knock, no, BEAT upon every door in town, and out of town.  I would not let it rest, I re-examined my situation over and over, and did everything I could in the meantime to stay strong and healthy.

Now, I'm just shy of 3 months into my treatment, and am seeing results and improvements.  Like you, my cognitive symptoms were severe.  I am finally having days where I see glimpses of my old mind!

I guess my point is, don't feel like you need to settle for this!  Your compassion for others with worse problems is warm and sincere, but you are nonetheless going through your own struggle, and you deserve the best care.  

For me, patient-to-patient forums at MedHelp have been of great help to me.  I got a lot of ideas, support, and chances to vent along the way.  Again, I'm sorry I don't know your history that well, but keep looking and keep open to possibilities.  My diagnosis didn't arrive in a neatly tied package, and I know I'd still be in Limbo had I not been so darn stubborn.

Helpful - 0
338416 tn?1420045702
The MS protocol for an MRI is at least 1.5 Tesla.  Your 1T MRIs are too low-resolution - for a good picture of what's going on in your head, you need something better.

I would ask for a neuro-psych exam from the psychiatrist.  This will give the neurologist a good idea of the organic damage your brain has acquired.

I would also go for the LP, even though it may not be conclusive.  Good luck!
Helpful - 0
667078 tn?1316000935
Correction it was 1.5 T, they said that was the strongest they had. One neuro was going to do the neuro-psych and then never ordered it and then she fired me. Yeah I have put the LP off for years.
Helpful - 0
751951 tn?1406632863
I do feel for you.  One of the things I fear most with whatever it is that ails me is the possible loss of my mental faculties, to whatever degree.  I was once a Mensa member (though I didn't find membership to be worth the dues).  Now I frequently find myself struggling for the right word, or stopping mid-sentence to try to remember what I was going to say next.  I'm planning to renew my driver's license a few weeks early, in case my vision gets worse between now and the expiration date.

I like wonko's advice to you, though.  I have learned over many years that we need an advocate in negotiating the health care industry seeking appropriate care, and quite often, we have to be our own advocate.  It's not easy, but we have to do it.  This afternoon I saw neuro #1 for the last time.  I will keep working for answers until someone convinces me that they can't be found.
Helpful - 0
667078 tn?1316000935
Hi,
  This has been going on for a couple of years with three Neurologists. I am keeping at it. Early MS seems to be the majority opinion. Just too early to treat since I only have two lesions and have had no clear attacks. I had one lesion disappear.
Helpful - 0
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