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8248462 tn?1406999616

MS or APS or Both Part 2

I appreciate the great help I have received on my first post. Thanks especially to Karry.

I went to the neurologist yesterday and got copies of all my consult notes from him. He was not too pleased as he thought I had returned to Canada and was already on DMDs. That was one reason for seeing him. He said PPMS so after that I learnt the DMDs did not help the progressive form of MS, is costly and side effects which made me hesitant if it was not going to help me.

I also asked him to tell me what led to his dx of MS when I have the aPL antibodies and APS and MS resembles each other in sxs and lesions. He did explain and the following is what he had written on the consult notes. A couple I had figured out when I was anxious about it but of course I am not a doctor.

Assessments: 1. White matter disorder (possible MS)
                       2. Myelopathy
                       3. Primary hypercoagulable state


The presence of Obands favor MS, if SLE is totally excluded(as it appears to be, he ANA and DS DNA are negative). On primary antiphospholipid anitbody syndrome (APS) the presence of Obands is rare as well as spinal cord involvement. The main point is to to be certain she has no neuropsychiatric lupus.

Transverse myelitis and neuromyelitis are other possibilities but the lack of RBC on her CSF, the multifocal pattern of her cord lesions ( dissemination in time and space), the size of them and the lack of NMO antibodies would go against these diagnosis.
After I did a ton of bloodwork and T and C spine MRIs

Assessments:
1. Multiple Sclerosis (Primary PP)
After reviewing her previous work up and having detailed discussion withe the hematologist I do believe she has MS (possibly PP). I don't think she should wait for another attack to start treatment. She can follow up with a neurologist in Canada since she lives there.

So, I am more at ease now and will return to Canada pretty soon so I can start treatment..
5 Responses
5887915 tn?1383382380
I'm sorry your post has gone unanswered but i think with it being the Easter holiday time many people aren't on the MS forum.

I bet you are relieved to have discussed all of this with your Neuro & you've had some of your questions answered. I am really sorry you have MS but at least you know exactly what you are dealing with now. I am unsure what treatment he would be suggesting for you if he is feeling you have PPMS. I am unsure if there are any DMDs for PPMS yet but that doesn't mean you can't try some of the DMDs available for RRMS. I'm hoping one of the more experienced forum members can give you the correct advice on the DMD subject.

I am on Rituximab which is prescribed for my RA but is also used in MS. I guess these are the things you will be able to start to sort out once you are home. I love the way your Neuro put "white matter disorder" because it's obviously a universal term. I was confused at my appts originally because at first my Neuro would use the phrase "chronic white matter disease" rather than MS & I kept questioning my dx. My Neuro has since graduated to just saying MS which is much more easy to understand & less of a mouthful for them I should think lol. :D

I am really hoping you could get into some sort of clinic or program now you have been dx. Try your local MS Society because they often have assistance program's for people with financial difficulties. They can at least point you in the right direction.

Take Care,

Karry.

8248462 tn?1406999616
Hi Karry, thank you so much for responding. I did not have computer access for a while and so is just able to respond. Yes, I suspected all along that it was MS but that positive test aPL threw a spokes into the wheel. In fact I think I have been having MS symptoms for years but because I have PTSD I had blamed the symptoms on stress.

I am back in Canada now and so will try to see what help is there other than the clinic 2 hours away that dismissed me after the positive antibody. test. I have an appt to see an internal med doc on June 5th to discuss how to handle the positive antibody test. I am praying I don't develop the syndrome. On the Hughes syndrome website I came across people who have both APS and MS.

I have a neuro here that I was seeing so I will get an appointment but I wish I had someone else. He is nonchalant .and just does not say much or explain anything.. I realize that some periods are worst so maybe I will benefit from one of the DMD's. I will discuss that with him. My disability drug plan does not cover some of them.

When I said I did not want to stress my daughter I meant like when I am going through a hard time and need support to let her know. I have told her about the MS and some of my limitations and she helped me when she could but she is at school now and so I don't want to add to the stress of her work. She is taking a difficult program.

I have a couple questions to ask you since you are the only one so far who has responded to me. Is it okay if I message you? Since you are newly diagnosed you could help me out a lot as I am not sure about some things.

I don't know the degree of your symptoms but I do pray you are doing well and getting all the help you need. Thanks again Karry.

Dee

I
1831849 tn?1383231992
Hi Dee - I must have missed your first post. Were you seen by a doc in the states, and are now back in Canada? Did the doc, whose notes you have, say why he thought is was PPMS? PPMS is relatively rare. It's only diagnosed in about 15% of people diagnosed with MS.

Kyle
8248462 tn?1406999616
Hi Kyle, yes you must have missed it and I am sure it's far behind now. I was seen by a doc in the States and I am back home in Canada. I had taken all my records including tests and MRI results and consult notes to both hema and neuro in Florida. He said possibly PP and I am guessing it's what he garnered from the notes and my symptoms.

I had been having symptoms for years but thought it was stress related. Things came to a head June 2012 when I woke up and had a loss of sensation from my waist down to my soles. Since that I cannot identify any clear period of being without old symptoms or new symptoms or old ones getting worst. I am guessing maybe that could be why he said maybe PP. I honestly am confused as I don't know where to draw the line between remission and relapse if I have experienced such since 2012.

Thanks for dropping in Kyle.
5887915 tn?1383382380
Hi Dee,

I'm glad to hear you are home safely & you already seem to have the ball rolling in some areas. I am heading off on holiday until mid next week so I will be unavailable for a week but you may message me anytime. I have had some difficulties accessing my profile/home page but if you send me a private message I can get in via the automated email they send out. I have been in touch with Med help regarding this issue but I still am yet to get any advice on this. I just thought I had better let you know what's going on.

I will look forward to hearing from you.

Take Care,

Karry.
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