Bloodwork question

[jibjen]

Hello,

I am from limboland but wanted to ask this forum a question. I have posted a few times and the members here are very kind and supportive even for those not diagnosed. So Thank You!

I began seeing a nuerologist for migraine 3 years ago but for the last year I have been having sensory issues. I have had 2 MRI's of brain only w/o contrast with abnormal results. MRI report suggests MS be in the differential...

This past week my neuro FINALLY ordered bloodwork for me after I reported having issues with my legs and fatigue

I read your health pages and it seems he did all the typical rule outs that they do for MS mimics although he did not say.

I followed up with him yesterday and all bloodwork is normal...He said let's wait and see..

What happens typically at this point with normal bloodwork? Is it a wait and see? I was hoping the bloodwork would giveme answers but I feel somewhat that it helps alot as it rules out alot but also like I am at square 1 again.

Is this truly at points a waiting game ?

Thanks for your time..

JibJen

[jibjen]

I know...I have read this..many times... I guess i feel like he is finally running tests...why switch now and start over...I know that is stupid...I think I will re-read the post about lies...

Thanks

[RedFlame]

Here it is:

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879

[RedFlame]

I think you need to re-read Quix, eloquent thread called 'lies my neurologist told me'  I will try to find it.

Red

[jibjen]

Hi,

Well, my doc intially said it's normal aging and migraine.....I originally strted seeing him for migraine...then last year my symptoms began...

To be correct on report in 6/09 when issues began say T2's are in supratentorial and most predominantly in centrum semiovale and high convexity subcortical WM.. distirbution atypical for MS

Another one done in 12/09 multiple scattered areas of increase FLAIR and T2  throughout subcortical WM of both frontal - parietal lobes with increase peritrigonal WM signal abnormality...unchanged in number, size and distribution. (from 6/09)

and my original MRI (with neuro when first seen for migraine) 2006 states few millimeter foci of T2 in both cerebral hemis consistent with demylination and gliosis..MS should be in differential..

I have no ideas where these areas are...or if they all mean the same...I am getting confused and was ready to give up until he started doing some tests...Bloodwork was a step forward. I am seeing him in November and will be curios to see what he does..He keeps saying not ready for LP...

Thanks for your help.
Jibs

[jibjen]

Hi...Thank you..this forum has so much to offer even when you are not diagnosed..so Thanks.

I know he ran the following

CBC
CMP
Calcium
Magnesium
B12
Folate
TSH free T4
FTA-ab
Hb Alc
Lyme
Ferritin
ESR


Thanks for makingme feel better about the LP...I appreciate that..sometimes you hear horror stories..

Jibs...I hope you are well ;o)

[RedFlame]

I forgot to ask about the bloodwork.  Do you know if they tested your ESR, CRP, B12, and RF?  Those are things that are frequently elevated in MS.  

It's a good idea to have copies of everything.  Red

[RedFlame]

Hi Jibs!   First of all, please don't feel that you shouldn't post here, we are all in this community.  The limbo-land is just a subgroup of the MS page.  I spent most of my time hear before I was diagnosed.

The LP sounds scary becuase of all we have 'heard' about on the news or family.  I was scared to death before my LP.  The procedure was painless and totally OK.  They will give you something to help you relax using an IV that will also have a pain killer as well.  It's quick and getting the results takes a couple of weeks.

Is there a way that you can tell him you want this figured out before November.  Alot can happen between now and November.


take care,     Red

[jibjen]

Hey......How are you? I hope you are doing well.....and Thanks..

I guess I really expected the bloodwork to show SOMETHING... I was little disappointed but I know this was a big step in my process of this whole thing....I think he was really surprised......He said he'll think about another EMG but really feels it would be normal again...but will revisit at next appt. he was lso tossing around another MRI this Fall.

I appreciate your thoughts and guess I will wait and see..just one more time..I see him in Nov. so..we'll see...


I am feeling better than I did a few weeks ago..so..knock on wood it will last
Jibs

[Mike_Shuswap]

Hi Jibby

Sorry to hear no answers yet. Glad the bloodwork has ruled out many possibilities.

I'm not so good at waiting and seeing myself, so I know how frustrating this can be for you.

As a matter of fact I fired my first neuro because he wanted to just wait and see, but he hadn't tried to look for possible MS mimics like your dr has done.

just wanted to let you know I'm pulling for you

Mike

[jibjen]

Hi,

Thank You. I know the bloodwork was a big step in my process for whatever is causing me havoc..

As far as if it IS MS..my worry would be it would not be treated soon enough..
I am also glad they did not point to the other diseases as well...

I guess time will tell all..i am grateful i am pretty stable now

Jibs

[essdipity]

Hi, Jibs. Yes, I'm afraid you're stuck waiting.

The rule-out work is important, nonetheless. I'm glad you are unlikely to have any of the diseases these tests can point to, and really hope you don't have MS. If you do, though, it will emerge. It's maddening to wait, I know.

ess

[jibjen]

Hi and Thank You.

My last MRI showed approx. 20 T2 hyperintensities in subcortical and trigonal area and cerebral hemispheres with gliosis. I had many MRI's in past and everyone has had increase of T2's. (Areas were noted differently in each MRI so they may mean the same subcortical, cerebral hemispheres, trigonal area, supratentorial areas) ... have not seen a specialist. He has never told me what he has found in nuero exam, except the fact when he tested sensory I told him I could feel on one side and not the other. I had an EMG which was normal a year ago.

My symptoms started in June 2009 with parethesia, itchiness, numbness and tingling on left side with vision issues, could not focus and was blurry at times. I was also having a tough time with names and memory, trying to find right words. Eye exam was normal and said I had perfect vision..Not an opthomologist though. I have had bouts of severe fatigue and weakness as well. I was having cramping in feet and legs. These all subsided

Curently I had an episode of severe weakness and pain in legs with burning senstaions going up shins and calves..painful which started on my right side though. We had severly hot weather and this is when this began..Don't know if it was related but now the weather is cooler and I am better. I could hardly get up and stand..I was getting stinging sensations in legs that would feel like I was being bit and them my legs would jump..I called it twitching but think it is more like legs were jumping.Right now I am stable.

I am also getting vomitting with and without a headache which is new..He had me on Topomax before but took me off to see what I was like off meds...


He keeps saying he is not ready for LP, to tell you the truth neither am I ;o) That process makes me nervous.

He has sent me to chiro when i had burning between shoulders who said I have scoliosis of spine but MRI shows no nerve entrapment bu small minimal protrsusion. He actually made me feel worse when I left there...


That's it in a nutshell

Jibs

[figuerpa]

I agree whole heartedly with SB. My neuro treated symptom after symptom. I finally told him that something has to be done, I can't keep going on like this and once again he said we would just have to wait and told me that I could get a second opinion but they would say the same thing.

So I went to my PCP and told him what was going on and he was upset with my neuro and decided it was time for him to take action and was going to order and MRI of my head and spine with and without contrast, do an emg and go from there and he would send the results to my neuro.

I told my neuro about it and that is when he actually started listening to me and decided to take the steps needed and ordered the MRI of my neck and spine with and without contrast. The results showed lesions in my spine and a couple in my head then last Monday I got an LP and I am still waiting the results for them.

Good luck and stand your ground, you know your body better than they do and if it is telling you something listen to it and do what needs to be done. I am 2 years and counting with my symptoms and wish I would have spoke up sooner but live and learn, then educate others on what you have learned is my motto.

Paula

[slightlybroken]

Sometimes they will play the "watch and wait" approach. I've had this done several times with no result and no diagnosis. I'm not saying this will happen in your case, but I'm saying this does happen.

What does your MRI report say? Do you know what abnormalities are found on your neuro exam? Have you seen an MS specialist? Do you have spasticity? What are your symptoms so far?

Sorry for all the questions LOL...but when someone suffers from migraines it does get a little sticky. You can get lesions, usually the small punctuated foci, but these can occur in MS too. How they distinguish between the two, is through symptoms and clinical evidence.

You need an MRI of the spine before your neuro takes the "watch and wait" approach ..in my opinion on the highest available MRI you can get on.. I kept adding on symptoms during this approach. The only treatment for me was symptoms treatment..throw a pill at whatever pops up. I would hate for this to happen to you

[jibjen]

Hi,

And thank you for taking the time to reply...

I only had MRI of head not spine yet...He had mentioned he may do another one this fall..

I guess the blood work ruled out alot for him then..I was just hoping for something to explain these weird and aggravating symptoms..I don't know how some people go through years and years of this..God Bless them....


Thaks a bunch
Jibs

[figuerpa]

Hi JibJen,

YES!!!! Diagnosing MS is a definate waiting game. At least he ran the blood work, so you are on the right track.

When he did your MRI was it of your head and spine or just head? After waiting a little while, he should run another one of both head and spine with and without contrast.

Neuros have to rule out every other cause of your symptoms before they can start diagnosing MS. Believe me we wish there was a definitive test for MS but there isn't, that is why it is an elimination game.

Hang in there


Paula