Help....

[Amanda1982]

Please help, my mum was incorrectly diagnosed with MS 13 years ago and it actually turned out to be Hughes, which took a lot of convincing to irish doctors that she actually had it. Well she is completely paralysed now from the waist down after starting a very high dose of warfarin and aspirin as well as steroids. She now has a very large lesion on her spine that they never told her about. Has ANYONE else been in this situation???

[Lure2]

Hi,

I am soon 70. How old are your mother? Like APsnotFab is saying many APS-sufferers have been thought to have MS.

I have read many pocket books (I live in Sweden) about Hughes syndrome. Kay Thackray (she has APS herself) has written a very good book about APS, called "Sticky Blood Explained". At page 34 she writes about MS.

I quote: "Since even MRI can show similar results for both illnesses, it is really whether you have the antibodies for APS or not. APS is a better diagnosis than MS as, at least, it is treatable and, in the long-term, usually less disabling".

Hope your mother have found an APS-doctor at last which is the most important thing. Someone who "gets" what she is talking about. I I were you I would give your mother that book above.

Give my regards to you mother.

Kerstin in Stockholm

[GinaD]

I know practically nothing about spinal leisons, so I concur that you must find a doc who is experienced about APLS!

The good news is that if sludge blood is the issue, there may be room for some improvement. Or not. But a knowledgable doc can help, for sure.

[InSpain]

Hello Amanda. I´m so sorry that you and your Mum are having such a hard time. In your post you don´t say what kind of lesion your Mum has, or where it is situated? I know how frightened you both probably feel, and overwhelmed too.

Firstly, most spinal cord lesions, big or small, are caused by damage of the vertebrae, ligaments as well as disks of the spinal column. Secondly, did you know that there is a clearly defined difference between lesions on the spine and tumors, and that maligant tumors are considered to be quite rare? Unfortunately, both can cause, as in the case of your Mum, a loss of function/sensation in any limb in the body. It depends which damaged nerve or compressed nerve route is being restricted due to the lesion and which part of the spine has been affected. I have two very large benign tumors on my spine, and I too have limited use of my legs. I get electric shock like sensations in both my legs and arms which are extreemly painful to say the least. These have been atributed to Polyneuropathy of the fine nerve endings. I obviously can only speak from my own experience but exercising and keeping my limbs mobile in a hydrotherapy pool has helped me. I have been advised to concentrate on toning the muscles so that they have a regular supply of healthy blood to them. I also take steriods like your Mum and I find that over the last year they have helped me considerably.

What I would suggest you do is to ask your GP for a referal to see a Doctor who specialises in Hughes Syndrome. They will be able to look at your Mums full medical history and help treat the symptoms that she has.

Sending you a big hug from here InSpain xxx

PS. sorry for the very long answer!!!!

[designer16]

Hi

It makes me very sad to hear this. Why are doctors so insistent on being right. I live in the United States. The neurologist also thought I had MS. Even though symptoms & other factors were pointing them in another direction they kept insisting that it was MS. Then other drs. Kept saying I think you have a autoimmune disease but not MS. They based their diagnosis on 1 small cervical spine lesion which was unchanged for years & oliconongeal bands in the spinal fluid, & rt leg weakness. I had no other symptoms. Then the MRI should I had spondylosis & the vertebral body was pushing on the cord. They did surgery & I was walking much better but the surgery failed . They had to do even a more extensive surgery which has left me in a wheelchair & very limited walking with a walker. I was diagnosised with APS 18 years ago when I was pregnant with my daughter. I have a very strong history for APS, but I test negative today. I have seronagative Hughes/APS. Prof Khastma basically told me I should have been treated for APS years ago & I may have never got to this point. They don't know enough about this disease & you never know they may get your mum blood thin enough that her condition will improve. I never give up hope I keep working at it everyday. I have experienced that it easier for me to walk when my INR is 4, but I have reactions to a lot of medications so I am still trying to get regulated. I go to see prof. Hughes next month. Please find a dr. That knows about Hughes/APS. Designer16

[Hidden]

Hi

Sorry for going off topic...are patients generally, seeing both prof K and Prof H? I have been wondering about this. I've seen Prof K fairly recently.

[Suzypawz]

I am sorry to hear your Mum was wrongly diagnosed 13 years ago, also that she has Hughes & suffered such a severe stroke....I hear it many times from other Hughes patients about being wrongly misdiagnosed or ignored & thought it was all in their minds at times! I hope someone else with similar experiences will get back to you.

In the meantime would your Mum like to / ok to maybe talk to others on here herself as well as you? it would be good for her to talk to others that will understand what she is going through maybe? It's so good for her to have you to support her as you obviously are x