can you be dxd without leisons?

[mrs marshmallow]

Hi there,
Can you please tell me if you can be dxd with ms without leisons on brain and spinal cord?
My daughter is 26 and possibly has ms,she has had many different symptoms throughout her life,bless her.
Far to many to mention but a few are,she had tunnel vision,sometimes unable to control bowel movements,numbness ,Sharp electric shock pains,irregular heart rates,water infections,inflammation in the female parts,jaw pain,severe fatigue,blackouts,etc etc etc.

She is seeing an ms nurse,mainly because she has had skin sores ,severe sores all over her body,it is thought that she may have skin lupus and possible ms,the meds for the skin lupus are what would also be used for ms,the ms nurse said,before she met mt daughter and reading her hospital notes she would have said she had ms,then the skin rash my daughter has ,has confused everyone.
It may be that she has ms and skin lupus.
What a nightmare! She is being treated as if she has systemic lupus but a consultant from the lupus hospital in London feels it is more likely she has ms and not systemic lupus
Sorry i went on a bit!have many been dxd without brain or spinal cord lesions? She has had scans showing she had swelling on the brain and spinal cord,which has gone down since she had high dose drip steroids and disease modifting drugs.
Thank you for any advice in advance.
Sandy.

[techie]

Berfore MRIs

That was the only way to get dx'd.
Sometimes I think the younger docs are too dependent on technology.
techie

[Redwings]

Hi Sandy:
Yes, MS can be diagnosed without lesions on MRI, but that happens in only about 5% of cases. The diagnostic process requires that all other possible conditions must be ruled out or accounted for.

It sounds like that's where the difficulty is in your daughter's case. It could be that she has MS and skin lupus, since something has to explain the skin sores. But lupus sometimes also affects the nervous system -- called neurolupus -- and can mimic MS. "Swelling" of the brain and spinal cord can occur for many reasons, and that alone doesn't indicate MS. In fact, a term as generic as "swelling" might not indicate MS because MS tends to be more specific in how it affects the central nervous system and tends to cause lesions that have particular characteristics.

Does the health service in the UK allow for second opinions? The Walton Centre in Liverpool (http://www.thewaltoncentre.nhs.uk/medical-services/) is a neurology specialty clinic that has an MS department and a neuroimmunologist. It seems that they would be more qualified than the consultant from the lupus hospital to assess the possibility of MS and/or neurolupus.

Your daughter's case is too complex for anyone here to say much more about it. The situation does sound like a nightmare, and my heart goes out to her. I hope that she's able to be assessed by a neuroimmunologist and that you both get some more definitive answers soon.

[mrs marshmallow]

Thank you very much for your replies,I know my daughter has been treated as if she has systemic lupus because she has so many problems,she sees a cardiologist,nephrologist,dermatologist,neurologis t,m.s nurse,now she is waiting for an appointment with a rhumetologist,I think it is such a stressful road to get q dxd.
She used to fall over all the time,she has had issues with her health all her life,she has swallowing problems due to hiatus hernia,dyslexia that was only dxd when she was 20

The ms nurse came out to see her today as she nearly fainted last night,her partner had to lay het down on the floor and get a towel as she had an uncontrolable bowel movement while laying on the floor,she gets this now and again,she has to cool down and lay there until it passes,now she will feel drained for a few days.the nurse said she must get an ambulance next time it happens,as she had an undiagnosed heart prob,her heart specialist says it appears to be a neurological problem as the structure itself is normal,but he has seen her irregular,palpitations etc.
I feel so sad for her,she has 3 year old twins and is the main earner in the household.
Thanks again Sandy.

[Sequoia]

Hi Sandy,

Since you're in the U.K. you might want to check out the Multiple Sclerosis Resource Centre:

www.msrc.co.uk

Not that you aren't welcome to post here, too!

[minivanmama]

Bless her heart. My heart goes out to y'all.

I am sorry that your daughter is feeling so bad. I hope that she will get answers soon and get feeling better. I know it must be so hard to see her feeling so bad.

Do call the ambulance next time she gets so bad.

Let us know how she is doing and keep us posted on how things are going. We are here anytime you need us and you can vist the post called "It's island time" there you will find others that are looking for answers.

(((hugs))) to both of you.

[mrs marshmallow]

Thank you all very much for your support,it is much appreciated.
The nurse told my daughter to call an ambulance next time,as she has so many issues,it could be something really simple to sort out but it could also be a warning to something more serious.
Thank you again. Sandy.

[thewildrose]

Bless You

My heart goes out to your daughter, and you for trying to find an answer for her.

Yes, I was dx with no lesions on MRI - swelling in C-Spine and positive Lumbar Puncture. There is also a blood test that I believe began in Europe and is fairly common in the U.K. to test for MS. This test has just begun being offered here in the U.S. through Glycominds.

I hope you can find an answer and treatment to help your daughter very soon.