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Multiple Sclerosis Message Board

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I have probably been to the message boards here before because I was diagnosed with antiphospolipid antibody syndrome (APS) years ago. I was told I had tested positive DRVVT which I guess is lupus anticoagulant like 6 different times and also had my first son stillborn because of a blood clot on the placenta which I guess is uncommon except in APS. I was told by a nurse that it only affects you when you are pregnant so since I wasn't planning to have any more babies, I figured I was good to go.

Fast forward to 2007 and I really was NOT good to go. I thought I was getting Alzheimer's my memory was so extremely bad (I was 30 something years old). I would forget my kids names, I would drive to the store and go right past it because I couldn't remember where I was going. I would say wrong words in a sentence or say the last thing I heard or saw instead of what I wanted to say. I don't remember if back then I was having any pain or numbness or anything else. I would read things and then have to just keep re-reading them because no matter how hard I tried I couldn't remember what I just read. I then had an incident where I was reading something on the computer and it was just as if someone took all the letters out of the message post and then just threw them back and however they landed that is what it looked like. Everything was just all jumbled up. I thought I was having a stroke or something. It was scary. I went to a doctor who said it is just stress. My labs were all fine. Being 30 something I doubt she would believe it was a mini-stroke but I just don't know. People with APS have higher risk of blood clots and strokes I think.

I found a group online for people with APS and just about everyone said that all those symptoms were consistent with APS. I have frequently since then had times where my hands or feet would feel tingly or numb. It first started I thought I had carpel tunnel but it was my whole hand. Then a few days later it went away only to be in my left hand instead. I figured it must not be carpel tunnel if it was on the other hand. When I had the stroke like symptoms, the doctor did send me for an MRI but my appointment to review the results was canceled and the family doctor I recently went to says it looks normal. When I described my symptoms to her she doesn't believe I have APS since I had one DRVVT test that was negative. She said she thinks it is more like MS. I tend to agree that it is still APS. She said the next time I have symptoms, she will try to get me in for another MRI. My guess is if the MRI shows no change from the last one then is she going to say I don't have MS either?

Can you have MS and not have it show up on MRI or have symptoms and not have changes to the MRI? I think she wonders why I have been dealing with it since 2007 and never went back to the doctor for it. The reason is that when I originally went I was told it was probably just stress and she herself doesn't believe it is APS. I can't find a doctor that understands APS at all. My symptoms including the blood clot are all symptoms of APS from what I have been told from others in my APS groups. I was also recently told that I had a RVT to my right kidney back in 2007 which was back when all this other stuff was going on. From what I can tell and RVT is a blood clot on the vein leading to the kidney. Weather is is APS or MS, I just want to know! The doctor also said that she is not sure it is MS either because my symptoms come and go. Maybe for only a day or a few hours. Maybe for a week or so. She either said if it was APS it would not come and go or that if it was MS it would not come and go. See, this is why I don't go to the doctor. Why go if no one is going to believe me or do anything about it? I am not one to make stuff up. Other than when I was pregnant I was only ever to the doctor for injuries or illness. Other than the APS, I never went to the doctor where they said there is nothing wrong with me. I don't want to be made to feel like I am crazy or making this stuff up so I don't go. I was told by members of my APS group that the symptoms are normal to APS so I figure I just deal with it. I only went to this doctor because I had shingles a few weeks before that and had to go see her.

Lately I have had fatigue that sometimes seems to come on suddenly. The doctor said that was probably a lingering effect of the shingles even though all the other shingles symptoms were gone. I also feel almost constantly dizzy which I told her. It is not like the rooms is spinning dizzy but my head just feels weird. I guess it is kinda how I got when I broke my wrist and was on heavy doses of pain med. I feel like I sometimes just want to close my eyes for a while hoping it will go away. My head feels "clogged". I still have the symptoms where I will start to say something and forget what I want to say or not be able to remember what things are called but this is nothing new and not as severe as it used to be. My legs both feel almost heavy but I am not having trouble walking. They just feel as if I ran a marathon even thought I don't run or jog.

I just don't know what to think! Can anyone give me any input? What do I do if they do an MRI and it shows nothing again? Because of insurance, I can't really switch doctors.

You can have MS early on without any noticeable lesions. If a non-specialist who has little if any experience with MSers reads an MRI image, lesions can often be overlooked or simply missed or dismissed. If you have images, there is nothing wrong with asking that the images be reviewed by an MS Specialist.

If symptoms persist, in 2-6 months lesions might become more visible. Nowadays the MRI will (should) be administered with and without contrast. The initial image is without contrast and the follow-up images are with contrast. If you have active lesions, the contrast solution will "light up" these lesions.

Lesion location can be related to a specific symptom, BUT it really is difficult to be able to make that assumption. It would become increasingly difficult once you have several hundred lesions! (You can call me "swiss cheese! :) )
The only time the assumption has been mad for me was when I developed bad gait and leg pains. There were no active lesions found until the VEP (visual evoked potential) results indicated that there were problems. The doctor added my t-spine to the MRI and active lesions were found on my t-spine.

At a minimum, your initial MRI for MS should include your brain and c-spine because that is the area most likely for lesions to develop.

Twitching, is common- for me- but to say common for MSers as a general rule- NO. MS is really an individualized disease. There is no set pattern or checklist for how MS can affect a person. Some MSers might be disabled early while others can go their entire life with only a few minor complaints.

It is difficult to know if a symptom is caused by a lesion or by a subset of MS. That is, anxiety, while a standalone disease, can also be a subset of MS. The MS caused anxiety could in turn cause symptoms. anxiety as a standalone disease also mimics MS. Maintaining a symptom journal helps, I think.

Once you are diagnosed with MS, you will start to learn when something is MS or not MS. Again, this is where a symptom journal can help. As I started my journey and new symptoms presented, I would ask about them and my neuro would review them check me and then advise if it was or was not likely MS. I have found that after a few years, I have a "feeling" about a symptom and I quickly know if it is MS or not. Now, I am still prone to error, but i am getting better! :)

Now, yes, you can have MS without an lesions, BUT you will not be diagnosed until at least two lesions are found. This is the accepted standard for the Revised McDonald Criteria. As long as your doctor applies this standard and runs the requisite tests, you should be able to get answers.


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