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Discussion Starter #1
Following my previous message, I have news! My doctor has admitted he does not know what is wrong with me! My numb face, and weaker left side is not a stroke, following a brain scan, but he thought that he would leave it at that! Following research on the net, and using links others have left on this site, I decided it was up to me to do all the leg work.

The doc has now spoken to my rhemy, and the are to do a MRI and blood tests, which my doc had admitted some he had not heard of:mad:

Can anyone tell me what they will be looking for on a MRI? Is there something that will show, that I will be told for definate, yes it is, or no its not CNS lupus?

The thing that is driving me mad, is the constant " Well it could be the lupus, or maybe not" diagnosis.

Is it just me, or does anyone else have that problem?
 

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Hello again,

I have to be rather brief here as I should be somewhere else right now :lol:

It's quite common for a doctor not to have heard of certain specialised blood tests. What is unusual is that they have the humility to admit it! The whole blood thing is extremely complex even for the best of doctors and often, docs will be limiting themselves to what they need for their speciality (for a GP that would be the general bloodtests). It's great that your doc has got in touch with the rheumy and that it is being investigated further.

I may be wrong on this but I there may not be that definite answer you are looking for. There are always several potential reasons and they may or may not show up in tests. The MRI will certainly help tell the doctors if there is anything unusual going on that need monitoring but it may not give you the "concrete" answers you are looking for.

sorry to be so rushed, speak soon,
Katharine
 

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Hopefully they are ordering an MRI with contrast (also known as an MRA). This is most useful for identifying many possible problems that CT scans will not be able to see. My grandmother is over 90 now, and has had several strokes, but her most recent one(s) were not visible on CT scan but were still clearly strokes as she has lost use of one side of her body. The MRI can be much clearer and more precise... so hopefully you will get some answers after that test.

I have to tell you the MRI alone will not be the final answer to whether you have lupus or CNS lupus. It may show changes consistent with it, but similar changes can be found with other disease processes too like MS. It will probably take a while longer to get to the bottom of it - those blood tests, a visit to a rheumy, and the MRI - before any doctor may be comfortable offering a diagnosis.

I certainly can understand your frustration at not knowing - it's happened to many of our members. You're not alone! Keep us posted - hopefully you'll get some answers soon.
 

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Discussion Starter #4
Thank you for your replies. Will let you know how the saga continues! Don't hold your breath though, have to await for the appt yet, could be a while...:(
 

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Hi and welcome.

I can tell you that if you just looked at my MRI you would be convinced that I have Multiple Sclerosis.....many lesions in the white matter of my brain.

Now, put it together with my abnormal blood work and clinical symptoms and a clearer picture is painted.

The MRI is helpful along with other things put together to hopefully provide you with a answer.

Hang in there and let us know how you get along.:wink2:
 

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Hi,
It is good news that it is not a stroke as that can be very serious and leave you damaged so to speak for life. It is good that your doctor is being honest with you about not knowing things instead of acting like he does and prolonging your care. It is a good idea to call in a rhuemy and they may not be done yet so don't be alarmed if they add to that list of doctors, it just means they are working together to find out what is going on with you.

The MRI will show more detail of things going on and more depth of inside tissue, muscle, and other important organs. I am sure it is just to get a better view of things. It might not give you the answer but it might help to rule out some things that they are thinking maybe happening.

Hope you the best for your MRI and relax they will find an answer it seems you are in good hands and that all the doctors working your case are very concerned to find the problem.
 

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I really think that the tests for Antiphospholipid Antibody syndrome are important in your case. I would strongly advise that you request them, if they haven't been ordered.

I agree with the others MRI may be helpful but is not totally definitive.
If you go to the Hospital I mentioned to you, they are very keen on MRI there. At least if you have it done I suppose you are being co-operative.
x Lola
 

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Hello there,i have cns lupus and as one previous person pointed out it shows up whats happening with the brain regarding inflammation etc..

I have had many my last one was last April which again showed changes from the previous one..i have APS to so they wasnt too sure if it was inflammation or where i had TIA,S,however i had a course of cyclo which helped..

Please let us know how you get on x x
 

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Just wanted to throw in my two-cents...a normal MRI/MRA does not rule out CNS lupus.

My brain scans always look perfect. My spinal tap, however, is another matter.
 

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Discussion Starter #10
Thank you all for the benefit of your experiences, it is so good to get feed back.
I just wish, firstly I did not have the damn illness, and secondly, if I have to have something, why cannot someone say "this is what you have, take this and you will be fine"! Well anyone can dream! Will keep you posted, Thanks again.
 

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Discussion Starter #11
Just to advise lola, Plymouth is not my local hospital. I am in the Torbay area. Thanks for your concern x
 

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Ah, I recently met a Radiographer who had worked in Torbay. She was very happy there.

I used to be able to travel to Plymouth on the Direct train from Portsmouth to visit my friend but sadly it is too much for me these days. I used to love the bit through Dawlish with all those fantastic red cliffs and the train nearly in the sea!

Good Luck to you, it can take a while getting the diagnosis and medication sorted out. I have CNS problems too. You can adapt, and even the times when you think you look silly, (like falling through displays of tinned fruit at Tesco) or times when your hands suddenly won't work I can honestly say that people do not really notice. Just try not to get over tired, learn to say No. Even better, learn to say, "I could do with some help myself" !
x Lola
 

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Hi,

It is still possible that you had a stroke. Nothing showed on my mother-in-laws CT scan. However the stroke was visible on the MRI/MRA.

No matter what the cause I hope your mobility issues get resolved quickly. Are you getting any physical therapy?

Take care,
Lazylegs
 

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The use of MRI and its significance was explained to me by my neurologist as such:
using MS as an example, the contrast in MS will show in a crescent shape primarily

in lupus the contrast will show more a scattered dotting pattern, it is not specific in any shape, kind of looks like paint splatters

other diseases will show certain patterns in the contrast but lupus does not show any any specific shape, ie crescent for ms, but is unique in its nonspecific pattern.

If more recent info has come up, I may be "out of date" on this but this is what they are looking for to identify which, if any, disease is present.
Sally
 

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Discussion Starter #15
I am so fed up, not able to work, get out on my own even. I am trying to claim DLA. I get the lower care component, but trying for more. Have the forms in front of me, gone blank. Has anyone got any tips?:(

I am not getting any physio, but dont think I could get there anywhere!
 

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Hi ld,

Sorry you are having such a hard time of this. If you put a post under the appropriate Social Security Forum (there are 2, USA & UK) you will probably get some help with the forms. There is also a lot of useful information in those forums from those who have gone through the process before you.

Good luck,

love
Lily
 

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you know you can ring DLA and do it all on the phone with the person if you wish too, my friend did it that way


good luck Lin xx
 

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Discussion Starter #18
Thanks for that lin, did she get it? I am on the lower rate for care, but had to go to a tribunal to get that! Very anxious about going through that all again, when feeling so poorly.
 

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Hi,

I can't add to what has been said, but want to say, I hope you feel better soon.

My best thoughts are with you, and I can feel your frustration. I hope you get the answers, you are seeking. :)

Love,
Sandy
 

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Hello!
You should be receiving more DLA help - at least some mobility component. Remember that DLA is also for people that are going to work every day.

My experience is that you have to write down every little detail, often several times in several places on the form.

I started by listing ALL my symptoms and diagnoses (on a big piece of paper) and them doing a huge diagram linking each one with things that I found unable/difficult to do on my WORSE days. I then made sure that each of these was mentioned in the form. Yes, it took me ages - but it was worth it!

I was honest about the variable nature of my symptoms but also made it clear that I was bad every morning and evening and the daytime could go from bad to worse at the drop of a hat!

I also explained each medication I take, Lupus and un-Lupus related.

Also I wrote a little story of my journey to diagnosis on an additional info page, including about having to give up work etc.

Do hope that you give it a good go - you deserve the money!
 
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