The search for a diagnosis…

[GrmaK]

So, finally got the results from my Lumbar Puncture, the hospital lost them, and they are a little confusing. It showed no bands, which is good, right? However it showed my IgG levels are high. I have almost every symptom of MS. I’m scared and confused.

They can’t do a brain MRI because of the stainless in my neck and the back of my skull. I’ve been sent to a neurologist, but she has quite a long waiting list.

My question to you, the outstanding members of this forum, is this: Can you use a CT scan to see lesions on the brain, brain stem and spine?

Thank you in advance, I hope someone has a little help for me

Kimberly

[NorasMom]

From my standpoint, it's pretty much been verified that you have some sort of autoimmune disorder, but there's still no indication of which one. I don't remember if they've checked you for others?

They used to say that lesions would NOT show up on CT scans, but it's my understanding that it could be possible with newer machines. I'm not much help, but don't give up. The process of finding a diagnosis can be often be painfully slow.

[GrmaK in reply to NorasMom]

I wish I had more patience I see a Rheumatologist in a couple weeks, and a neurologist too.

Hopefully they will figure it out!! I’m super frustrated, but I’ll survive it. Thanks NorasMom😍

[NorasMom in reply to GrmaK]

Ooooooh, I'm envious! My son's a Limbo-Lander like yourself, and we've been struggling for several years to find ANY rheumatologist who will see him. They're apparently few and far between in our area, and none want new patients.

[ahrogers]

I don't think a CT scan can see MS lesions but the neuro will know for sure. Another test you can do is evoked potential. I am sure the rheumatologist will order a bunch of tests to help figure it out.

I hope you get answers soon. Fortunately, these days there seems to be a treatment for most autoimmune diseases.

[GrmaK]

Thank you- that helps me a lot!

[RoyceNewton]

Ask for an MRI 3 Tesla is good. Do not expect to be familiar with this. It relates to the strength of the machine, and 3T is about standard these days, Take Valium before you go into the tube, it helps.

Royce

[GrmaK]

Royce,

Is this kind of MRI different? I can’t take the regular one as I have stainless steel in my back, neck and head from old stimulators that never worked. That’s why I wondered about the CT scan.

Thank you for the info!! I will definitely ask about the MRI you mentioned

Kimberly

[mrsmike9]

You have stainless steel and not titanium?

[Tazmanian]

Your neurologist can answer all your questions I know the waiting is terrible but unfortunately necessary good luck unfortunately it can take along time to get a definitive diagnosis

[GrmaK]

I have a bunch of titanium from my car accident, 20 years ago, but in their efforts to reduce the pain they have tried two stainless pain stimulators. So, yep I have both.

I just have to maybe find out if they can take it all out. They were both useless. I don’t use them at all. It seems like it would be worth it.

I don’t know. I’ll see the doctors over the next two weeks and see what they say. I just wish I knew what was going on.

Thanks to all of you!!!!! You are the best!!!!

Kimberly

[Amore55]

Can you have a lumbar puncture?

[GrmaK in reply to Amore55]

I had an LP a couple weeks ago. The hospital lost the results for a week or two. Finally got the results, no bands, but elevated IgG levels. I’m just figuring out what that means with the help of this forum. I see a rheumatologist and a neurologist in a couple of weeks, so on we go

[Amore55 in reply to GrmaK]

Sorry, I’m not paying close enough attention! I’m sure hoping that you receive some answers soon!

[Mollyabigail]

I am sorry, but I cannot answer your question about CT scans. But I do understand your fear and confusion. A diagnosis, or the lack of one, is like being hit with a ton of bricks. Maybe you can learn more at the rheumatologist appointment. Prayers for you!!

[GrmaK in reply to Mollyabigail]

Thank you! You have no idea how much the support helps me!!! This has been a struggle so far. I’m hoping we at least have a diagnosis soon

[Mollyabigail in reply to GrmaK]

Who knew all these people were here to support each other? I did not! But I am so glad they (we) are! It "is" a struggle. Looking at a calendar, waiting to see a doctor, wondering what caused 'this', trying to find a new normal, limping thru the day, wondering what your life is going to look like now, etc. etc. (I live in my head, can you tell?). Just know you are being lifted in prayer from just south of Memphis! Keep us posted! 🙏

[kycmary]

Hi Kimberly I am sorry I do not know I have heard both ways which I know doesn't help & if you ask the techs who are suppose to know you will get strange looks at least I did. I know some who were diagnosed rapidly & some who waited 10 & more years for there diagnoses. It is a big waiting game as I had a friend who waited over 10 years for her diagnoses only to be told 2 yrs later that they were wrong she didn't have MS then her daughter was diagnosed with MS a few yrs later. She had a heart attack & passed on about 4 yrs ago & they quit trying to find out if she had MS or not!

[GrmaK in reply to kycmary]

I suppose at that point, it’s moot;). I would like to know one way or another, as I’m sure everyone does. Seems like waiting is just further torture.

Thank you!!!

[kycmary in reply to GrmaK]

Yes I know how knowing settles the mind it did meI pray you'll get an answer soon. Mary