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MS or APS or Both
Greetings everyone. This is my first post here and I am confused and worried. June 2012 I was hospitalized with numbness/loss of feeling from my waist down. I also had dizziness and a stumbling gait, burning over my body, buzzing feeling inside my body etc. It took about 8 weeks for me to get back close to normalcy. I was left with permanent numbness in the soles of both feet and weakness in my right leg which I have to drag sometimes.. MRI of spine and brain showed some lesions and spinal fluid was positive for Obands. They questioned MS. One neuro said MS but said he would not treat me until I had another attack. I was sent to the MS clinic Oct 2012 where they did an intake. I was not seen again until July 2013 where MS was still being questioned. One test that was not done in 2012 was done. Oct 2013 I went back and was told the test for antiphosphospholipid antibody was positive. It was repeated in October and was positive again. So a letter was sent to my NP that I should see a hematologist as they think it's APS. They would not see me again as I was not from their area.
I would not get an appt for a hema for 3 months (Canada) and I was very concerned so I crossed to the US to see a hema. He said the positive antibody test was one thing but there was more going on and I needed to see a neuro. I had taken all my MRis and tests results with me. I did a lot of tests again and the same test came back positive. I also saw a neuro and at the outset he said MS but with the positive APL he said it was a bit complicated. I did a spinal MRI as I only repeated the brain ones in Canada. After MRI and test results neuro and hema conferred and said even though antibody tests was positive the fact that I did not have any symptom of APS meant I could not be diagnosed with APS. Neuro said I definitely had Primary Progressive MS.
My question is does anyone here have any experience with dealing with APS, MS and both? Any MS patient diagnosed with both? I am wondering which do I have and if I have both. I am more scared of APS. I should say I have PTSD from childhood and spousal abuse and so it makes it so much easier for me to be anxious/depressed about all this. I also do not have any family except 3 kids and the 2 older ones(boys) care nothing about me. The youngest....20 and a girl is in university, cares but I don't want to stress her. Thanks for reading.
I would not get an appt for a hema for 3 months (Canada) and I was very concerned so I crossed to the US to see a hema. He said the positive antibody test was one thing but there was more going on and I needed to see a neuro. I had taken all my MRis and tests results with me. I did a lot of tests again and the same test came back positive. I also saw a neuro and at the outset he said MS but with the positive APL he said it was a bit complicated. I did a spinal MRI as I only repeated the brain ones in Canada. After MRI and test results neuro and hema conferred and said even though antibody tests was positive the fact that I did not have any symptom of APS meant I could not be diagnosed with APS. Neuro said I definitely had Primary Progressive MS.
My question is does anyone here have any experience with dealing with APS, MS and both? Any MS patient diagnosed with both? I am wondering which do I have and if I have both. I am more scared of APS. I should say I have PTSD from childhood and spousal abuse and so it makes it so much easier for me to be anxious/depressed about all this. I also do not have any family except 3 kids and the 2 older ones(boys) care nothing about me. The youngest....20 and a girl is in university, cares but I don't want to stress her. Thanks for reading.
Yes the previous documentation would have helped this new Neuro come to the PPMS conclusion. I think it is a good idea if all of these medical records not just be sent to your PCP but that you also keep copies. When you see any docs from now on ask them if you can be given copies of any reports. This means that you have all of your medical information at your finger tips.
You can always wear ted stockings if you are concerned about your mobility and getting a thrombosis. I would recommend you do some exercises that still keep the blood pumping but not necessarily having to use your right foot. I have had to do this many times in life when my mobility is not good & my arthritis is needing movement. It's not a perfect solution but it's certainly helps.
I find if I am getting overwhelmed by things I sometimes need to take a step back & have timeout from the cause of this. I then will compile a list of what needs to be done & from there put things into order of priority. I also like to see if my worry is warranted. Sometimes when you look at things again with a different mind set you wonder why you worried so much about it in the first place.
I honestly think you need to speak to your daughter about all of this. I'm sure she would want to know what's happening just like you would want to know if the tables were turned. She's a big girl who can make her own decisions on whether this is too stressful for her or not but she can't do that if you don't give her the chance.
When you get home ask your doc about seeing a counsellor or similar if you aren't already. I did this after my dx & I can say it has helped me tremendously. This can often be accessed by your MS organisation in your area.
Take care,
Karry.
You can always wear ted stockings if you are concerned about your mobility and getting a thrombosis. I would recommend you do some exercises that still keep the blood pumping but not necessarily having to use your right foot. I have had to do this many times in life when my mobility is not good & my arthritis is needing movement. It's not a perfect solution but it's certainly helps.
I find if I am getting overwhelmed by things I sometimes need to take a step back & have timeout from the cause of this. I then will compile a list of what needs to be done & from there put things into order of priority. I also like to see if my worry is warranted. Sometimes when you look at things again with a different mind set you wonder why you worried so much about it in the first place.
I honestly think you need to speak to your daughter about all of this. I'm sure she would want to know what's happening just like you would want to know if the tables were turned. She's a big girl who can make her own decisions on whether this is too stressful for her or not but she can't do that if you don't give her the chance.
When you get home ask your doc about seeing a counsellor or similar if you aren't already. I did this after my dx & I can say it has helped me tremendously. This can often be accessed by your MS organisation in your area.
Take care,
Karry.
Hi Karry, I think that feeling maybe something else then. For years I suffered from fibromyalgia so it could be a combination of both. I am responding here then will start a new thread if I need to. I am sorry that you have to deal with both RA and MS. That must be hard.
I think the PPMS diagnosis came from the fact that it was 18 months after my hospitalization that I saw the last neuro and my symptoms never really went especially the progressive worsening of the weakness and decline in mobility in my right leg. I had also given him all results and consult notes from all the doctors I saw. It takes a worsening of symptoms for a year with no marked relapse and a positive CSF test for that diagnosis. I do not remember if blood was taken at the same time with the spinal fluid. It was done June 2012 when I was hospitalized. I know blood tests were done but don't remember if more was done with the s/tap. As well as the Obands the IgG index was also high.
I notice since yesterday I can hardly lift my right foot to walk. Even 5 mins of walking seem like a chore and then I need to keep moving esp due to the sticky blood positive test. I am also so extremely tired. I really feel like giving up. I have so much to attend to and no one to help me.
I have been in the US since Nov 2013. Due to depression from PTSD I get more depressed in the winter months so for the first time I was able to get away from the winter of the last 20 years ( I am originally from the Caribbean)
Oh, I had already asked the neuro here to send a copy of his consult to my PCP in Canada and I have been in touch with her and my worker there. Take care Karry.
I think the PPMS diagnosis came from the fact that it was 18 months after my hospitalization that I saw the last neuro and my symptoms never really went especially the progressive worsening of the weakness and decline in mobility in my right leg. I had also given him all results and consult notes from all the doctors I saw. It takes a worsening of symptoms for a year with no marked relapse and a positive CSF test for that diagnosis. I do not remember if blood was taken at the same time with the spinal fluid. It was done June 2012 when I was hospitalized. I know blood tests were done but don't remember if more was done with the s/tap. As well as the Obands the IgG index was also high.
I notice since yesterday I can hardly lift my right foot to walk. Even 5 mins of walking seem like a chore and then I need to keep moving esp due to the sticky blood positive test. I am also so extremely tired. I really feel like giving up. I have so much to attend to and no one to help me.
I have been in the US since Nov 2013. Due to depression from PTSD I get more depressed in the winter months so for the first time I was able to get away from the winter of the last 20 years ( I am originally from the Caribbean)
Oh, I had already asked the neuro here to send a copy of his consult to my PCP in Canada and I have been in touch with her and my worker there. Take care Karry.
The heat intolerance associated with MS is called Uhthoff's Phenomenon. When I get affected by heat it brings on certain symptoms like blurred or double vision, vertigo, tremors & weakness but this is only transient & once I have cooled down my symptoms subside. So I would not think you would still be having issues up to 3 days after the event. I think this must have been something else that caused your 3 days of pain & weakness. I could be wrong here & if I am I'm sure someone else will speak up.
The heat intolerance is not a given with MS some people don't have it at all & some may even be more intolerant to the cold. I have been having cooler showers for many many years now because of this problem. I can get it if I have been doing something strenuous like cleaning as well. It is a pain for me as I have had rheumatoid arthritis for most of my life so my joints don't like being cold at all and thus with things like air conditioning I just find a temp that is not going to give me painful joints. I really wish sometimes my MS & RA would play nicely lol.
I am glad you seem a bit less anxious about all of this now. I hope you can get the care you need in the long run & don't face too many hassles there. I know the health systems across the world are struggling so you are not alone. In regards to DMD's you would need to discuss this with your Neurologist in the long run. I am uncertain of how you got the primary progressive label so quickly as usually the neurologist will say MS & watch you for a year in PPMS. If you presented with a relapsing remitting type of MS that would be different. I am fairly new at this so I could be wrong here & I probably am.
I would probably suggest you get a letter from the doc in the US stating your dx before you leave to go back to Canada. Even a copy of the basic run down of your visit should do. I just don't want you to go through any hassles when you return home.
When you had your lumbar puncture did they take blood from you at the same time? I know you said the report says "just OBands" but the amount of O Bands is important in dx MS. It is also important that these O Bands are unique to the blood sample taken at the same time. All of these uncertainties are why you need to get some reports from the Neurologist before leaving the states or you could be back to square one. Try & get all of your reports from anything you have had done before leaving because then you have all of this to back you up.
If you think of any other questions you may have post a new question because I'm worried it will get missed at the end of this thread. I was only dx last year so I am not as knowledgeable as many in this community. By the way how long have you been in the US? I bet you will be happy to be home soon. :-)
Take Care,
Karry.
The heat intolerance is not a given with MS some people don't have it at all & some may even be more intolerant to the cold. I have been having cooler showers for many many years now because of this problem. I can get it if I have been doing something strenuous like cleaning as well. It is a pain for me as I have had rheumatoid arthritis for most of my life so my joints don't like being cold at all and thus with things like air conditioning I just find a temp that is not going to give me painful joints. I really wish sometimes my MS & RA would play nicely lol.
I am glad you seem a bit less anxious about all of this now. I hope you can get the care you need in the long run & don't face too many hassles there. I know the health systems across the world are struggling so you are not alone. In regards to DMD's you would need to discuss this with your Neurologist in the long run. I am uncertain of how you got the primary progressive label so quickly as usually the neurologist will say MS & watch you for a year in PPMS. If you presented with a relapsing remitting type of MS that would be different. I am fairly new at this so I could be wrong here & I probably am.
I would probably suggest you get a letter from the doc in the US stating your dx before you leave to go back to Canada. Even a copy of the basic run down of your visit should do. I just don't want you to go through any hassles when you return home.
When you had your lumbar puncture did they take blood from you at the same time? I know you said the report says "just OBands" but the amount of O Bands is important in dx MS. It is also important that these O Bands are unique to the blood sample taken at the same time. All of these uncertainties are why you need to get some reports from the Neurologist before leaving the states or you could be back to square one. Try & get all of your reports from anything you have had done before leaving because then you have all of this to back you up.
If you think of any other questions you may have post a new question because I'm worried it will get missed at the end of this thread. I was only dx last year so I am not as knowledgeable as many in this community. By the way how long have you been in the US? I bet you will be happy to be home soon. :-)
Take Care,
Karry.
Hi Karry, thanks again for helping me through this. You are so right about not worrying. Coincidentally I was thinking through the whole scenario and trying to sensibly rationalize and that was my conclusion. "Stop worrying, especially over something I have no control over. There are evidences of both APS and MS but more clinical and tests result to back up the diagnosis of MS. Some people do have the aPL antibodies but not the syndrome so stop worrying yourself sick over what might not be". Those were the words to myself and then you have confirmed that self talk with your response. :)
The MS clinic I went to will not see me again as they already dismissed me saying my PCP should seek help for me regarding the positive aPL result, I am outside their catchment area and they are undergoing changes due to budget cuts. So a dx by another doctor means nothing to them. In fact they make it clear they do not accept everyone who is sent to them. My PCP told me of a young woman in her 30's who had MS real bad and they did not accept her as a patient. As I said I live in a small city which does not have a lot of specialists so one has to travel to other cities to see one and wait times are really long. That's the reason I came to the US in November 2013 to see a hematologist and he said I also needed a neurologist based on my symptoms and test results I had taken with me.
I will try to not worry but do what I can to deal with what I do know about and seek how to get an MS specialist. I return to Canada at the end of this month and I am hoping to get an appointment with an internal medicine doctor. My PCP has requested an appointment.
What do you think of this? I always heard that MS does not like heat. A couple weeks ago I went and sat in a hot tub for a little while. The water was not very warm; in fact cooler than I used before I got sick.. I was supposed to travel a day later and could not budge. I was so weak and so much pain. It took 3 days for me to recover. Do you think it was the slightly warm water that I sat in?
Hope you had a great w/end.
Dee
The MS clinic I went to will not see me again as they already dismissed me saying my PCP should seek help for me regarding the positive aPL result, I am outside their catchment area and they are undergoing changes due to budget cuts. So a dx by another doctor means nothing to them. In fact they make it clear they do not accept everyone who is sent to them. My PCP told me of a young woman in her 30's who had MS real bad and they did not accept her as a patient. As I said I live in a small city which does not have a lot of specialists so one has to travel to other cities to see one and wait times are really long. That's the reason I came to the US in November 2013 to see a hematologist and he said I also needed a neurologist based on my symptoms and test results I had taken with me.
I will try to not worry but do what I can to deal with what I do know about and seek how to get an MS specialist. I return to Canada at the end of this month and I am hoping to get an appointment with an internal medicine doctor. My PCP has requested an appointment.
What do you think of this? I always heard that MS does not like heat. A couple weeks ago I went and sat in a hot tub for a little while. The water was not very warm; in fact cooler than I used before I got sick.. I was supposed to travel a day later and could not budge. I was so weak and so much pain. It took 3 days for me to recover. Do you think it was the slightly warm water that I sat in?
Hope you had a great w/end.
Dee
I know it's easy to say but try not to worry this will only make your symptoms worse. The antibiotics may or may not have produced a false positive with the APS tests & you have never had a thrombosis so the APS may be out of the picture. It is wise to get them redone to be sure about this status.
Can your PCP contact the MS Clinic & have a word with them. If you have been officially dx with PPMS then they should not be sending you away. They may have assumed that the positive APS testing was excluding MS but you have since had a LP with O Bands which is supporting the dx of MS.
Keep taking the aspirin because you could be correct in saying it is protecting you. You can have the 3 APS tests done through your PCP & the MS clinic does not need to know about this until the results come in. If these come back positive again you need to see a haematologist or a rheumatologist to discuss these results & get that doc to liaise with the MS clinic.
In the meantime post different questions you may have about MS on the forum here & you can learn more about your MS. Also get in contact with your local MS chapter in your area they should be able to help you with advice & information as well as possibly finding you an MS Specialist. Try to keep copies of your results from any testing & keep a journal of your symptoms.
You have found a lovely community of people here & ask as many questions as you like. It is a tad quiet on the weekends though. Please try not to worry yourself & try to look at the situation as it is now. You may have had false positive results from your APS tests as you were on antibiotics. You were dx with PPMS in the US & you need to educate yourself about this condition. Take a deep breath & try to refocus on what you need to at the moment rather than things that may never be.
Take care & again welcome to the community.
Karry.
Can your PCP contact the MS Clinic & have a word with them. If you have been officially dx with PPMS then they should not be sending you away. They may have assumed that the positive APS testing was excluding MS but you have since had a LP with O Bands which is supporting the dx of MS.
Keep taking the aspirin because you could be correct in saying it is protecting you. You can have the 3 APS tests done through your PCP & the MS clinic does not need to know about this until the results come in. If these come back positive again you need to see a haematologist or a rheumatologist to discuss these results & get that doc to liaise with the MS clinic.
In the meantime post different questions you may have about MS on the forum here & you can learn more about your MS. Also get in contact with your local MS chapter in your area they should be able to help you with advice & information as well as possibly finding you an MS Specialist. Try to keep copies of your results from any testing & keep a journal of your symptoms.
You have found a lovely community of people here & ask as many questions as you like. It is a tad quiet on the weekends though. Please try not to worry yourself & try to look at the situation as it is now. You may have had false positive results from your APS tests as you were on antibiotics. You were dx with PPMS in the US & you need to educate yourself about this condition. Take a deep breath & try to refocus on what you need to at the moment rather than things that may never be.
Take care & again welcome to the community.
Karry.
Hi Karry, thanks again for taking the time to respond. The spinal tap was done when I was hospitalized in 2012. The report does not say how many bands. It mentions IgG, Albumin, IG Index and it just says Oligoclonal bands------Present.
The first aPL test was done close to my taking 2 weeks of 2 types of antibiotics for 14 days. The 3rd one was too close. I will seek to have it done again.
As for the tremor I don't only feel it at rest but if I am about it does not bother me that much until I want to be quiet and go to sleep. Another thing is the soles of my 2 feet are permanently numb since the attack in 2012 and have a rough sensation.
It is long wait times to see specialists in Canada and the MS clinic which is 2 hrs from me dismissed me when the aPL test was positive so I have no idea how to find a MS Specialist. I live in one of the smaller cities.
I did check both sites and saw how close in symptoms they are even to the dragging of the feet. I am frightened and confused. I am hoping the aspirin will protect me if it is APS and I will try to find a way to see an MS specialist..
Take care Karry x x
The first aPL test was done close to my taking 2 weeks of 2 types of antibiotics for 14 days. The 3rd one was too close. I will seek to have it done again.
As for the tremor I don't only feel it at rest but if I am about it does not bother me that much until I want to be quiet and go to sleep. Another thing is the soles of my 2 feet are permanently numb since the attack in 2012 and have a rough sensation.
It is long wait times to see specialists in Canada and the MS clinic which is 2 hrs from me dismissed me when the aPL test was positive so I have no idea how to find a MS Specialist. I live in one of the smaller cities.
I did check both sites and saw how close in symptoms they are even to the dragging of the feet. I am frightened and confused. I am hoping the aspirin will protect me if it is APS and I will try to find a way to see an MS specialist..
Take care Karry x x
I'm hoping some of the Canadians can jump in & help you here because I'm over in Australia which is a very different health system.
How many O Bands did they find & did you have the blood taken at the same time? The bands need to be unique to the blood. I think if this was all done correctly & you have so many O bands then this would make the MS likely.
I think you need to have the 3 APL blood tests done again as well & then redone 6 weeks later. Just to ensure there are no false positives which can happen if you are on antibiotics or have some sort of viral illness. The thing is with APS everyone is different & some people need to get quite a high INR so they need to be on warfarin & others only need aspirin. I believe that some people improve with the correct treatment but others don't so much. APS can affect any system in the body & if one of yours just happens to be the brain then the neurological symptoms a vast.
In regards to the MS you really need to be under the care of a MS Specialist at one of the free clinics. This is where I know we have some Canadians on this forum & I hope they will give you some advice here. To answer your question about tremors, Yes tremors are quite common in MS but also in neurological conditions in general. There are different types of tremors as well. The way you are explaining your tremors as causing you problems getting off to sleep makes me think you have a resting tremor which is not usually found in MS.
I think you really need to look at both conditions here. The fact that the haematologist wants you to continue taking the aspirin is saying a lot as well. I think it is very important for your well being that both of these conditions are carefully evaluated by a Neuro before you can say what's happening here. You need a Neuro in your own country because of your financial situation & I honestly would think that Canada had a public (free) system that can cater for your needs.
If you look on the Hughes foundation site & click on symptoms & then on the right it says brain symptoms you will see how much APS is like MS in that regard & that many people have been incorrectly dx'd with MS. It is very important for your well being that you find a neurologist to find out the correct causation because if it was APS & you weren't on treatment because you thought it was MS the consequences to your health could be enormous. I personally doubt you would have both MS & APS going on together but I'm certainly no doctor here.
I will leave it there for now in the hope someone in Canada can help with getting you to a good Neurologist.
Take Care,
Karry.
How many O Bands did they find & did you have the blood taken at the same time? The bands need to be unique to the blood. I think if this was all done correctly & you have so many O bands then this would make the MS likely.
I think you need to have the 3 APL blood tests done again as well & then redone 6 weeks later. Just to ensure there are no false positives which can happen if you are on antibiotics or have some sort of viral illness. The thing is with APS everyone is different & some people need to get quite a high INR so they need to be on warfarin & others only need aspirin. I believe that some people improve with the correct treatment but others don't so much. APS can affect any system in the body & if one of yours just happens to be the brain then the neurological symptoms a vast.
In regards to the MS you really need to be under the care of a MS Specialist at one of the free clinics. This is where I know we have some Canadians on this forum & I hope they will give you some advice here. To answer your question about tremors, Yes tremors are quite common in MS but also in neurological conditions in general. There are different types of tremors as well. The way you are explaining your tremors as causing you problems getting off to sleep makes me think you have a resting tremor which is not usually found in MS.
I think you really need to look at both conditions here. The fact that the haematologist wants you to continue taking the aspirin is saying a lot as well. I think it is very important for your well being that both of these conditions are carefully evaluated by a Neuro before you can say what's happening here. You need a Neuro in your own country because of your financial situation & I honestly would think that Canada had a public (free) system that can cater for your needs.
If you look on the Hughes foundation site & click on symptoms & then on the right it says brain symptoms you will see how much APS is like MS in that regard & that many people have been incorrectly dx'd with MS. It is very important for your well being that you find a neurologist to find out the correct causation because if it was APS & you weren't on treatment because you thought it was MS the consequences to your health could be enormous. I personally doubt you would have both MS & APS going on together but I'm certainly no doctor here.
I will leave it there for now in the hope someone in Canada can help with getting you to a good Neurologist.
Take Care,
Karry.
Hi Karry, thanks for the welcome and thanks for your response. You have helped. First, I started taking 325mg aspirin daily. I did that even before I was told and the hema says to continue. I have tried to find all info on both and the fact that they closely resemble each other is what concerns me.I read that after being on an anticoagulant if it's APS then the symptoms should improve. Mine have not but I don't know if aspirin would be enough. The symptom they say has to go with the positive test is one to do with thrombosis. I also saw that on the test result from the lab and on different websites.
I did not have all 3 tests same time. I had the first 2, 12 weeks apart in Canada and the 3rd one 3 weeks later in the USA. The result was 35GPL. It said diagnosis of APS requires >40 and a thrombotic incident.
cAs for seeing a MS specialist that might not be possible. The MS clinic 2 hours from me did not treat me right. 9 months between appointments and then the APS test they had taken the blood for but did not get it to the lab at the correct temp and so it was not done. It was at the 9 month visit that it was done and they got the positive result. They won't see me again as they say they have had cuts to the system. I came to the US as it would take too long to see a hema in Canada. So in the US I saw a hema and the neuro. I should have asked the neuro to send me to a MS Specialaist but I took it for granted that that's who he was going to send me to. The Neuro does see a lot of MS patients though. It costed a pretty penny to see them and to do the tests and MRI so now I do not have anymore money to see an MS Specialist :(
I am now stressed which makes me nervous and light headed. Oh, I have always had migraine headaches since I was 8 years old. I also have bad allergy and when exposed to things like perfume, chemicals etc it affects my sinus/allergy and I get a migraine. My brain MRI showed chronic sinusitis so my headaches are what I call face aches as they are in the sinus areas. I have been having headaches (slight) about 4 weeks now and even though I can feel my sinuses affected I got concerned since I read headaches are common with APS..so I don't know. My daughter was diagnosed with migraine from 6 years old.
Does MS cause tremors? My body feels like a buzzing machine is on the inside and it makes it hard to settle to sleep. I also have difficulty urinating and constipation. My right leg has been getting progressively weaker. In fact my mobility and stamina have decreased about 60% in one year and then there is the fatigue and sharp nerve pains in my feet and muscle spasms. There is also brain fog and so frustrating when I cannot find the right words to use. I read that a lot about APS. One thing I read was that in APS there are no Obands in the CSF and I had Obands. I got that from a reliable site. The NIH.
Thanks again.
I did not have all 3 tests same time. I had the first 2, 12 weeks apart in Canada and the 3rd one 3 weeks later in the USA. The result was 35GPL. It said diagnosis of APS requires >40 and a thrombotic incident.
cAs for seeing a MS specialist that might not be possible. The MS clinic 2 hours from me did not treat me right. 9 months between appointments and then the APS test they had taken the blood for but did not get it to the lab at the correct temp and so it was not done. It was at the 9 month visit that it was done and they got the positive result. They won't see me again as they say they have had cuts to the system. I came to the US as it would take too long to see a hema in Canada. So in the US I saw a hema and the neuro. I should have asked the neuro to send me to a MS Specialaist but I took it for granted that that's who he was going to send me to. The Neuro does see a lot of MS patients though. It costed a pretty penny to see them and to do the tests and MRI so now I do not have anymore money to see an MS Specialist :(
I am now stressed which makes me nervous and light headed. Oh, I have always had migraine headaches since I was 8 years old. I also have bad allergy and when exposed to things like perfume, chemicals etc it affects my sinus/allergy and I get a migraine. My brain MRI showed chronic sinusitis so my headaches are what I call face aches as they are in the sinus areas. I have been having headaches (slight) about 4 weeks now and even though I can feel my sinuses affected I got concerned since I read headaches are common with APS..so I don't know. My daughter was diagnosed with migraine from 6 years old.
Does MS cause tremors? My body feels like a buzzing machine is on the inside and it makes it hard to settle to sleep. I also have difficulty urinating and constipation. My right leg has been getting progressively weaker. In fact my mobility and stamina have decreased about 60% in one year and then there is the fatigue and sharp nerve pains in my feet and muscle spasms. There is also brain fog and so frustrating when I cannot find the right words to use. I read that a lot about APS. One thing I read was that in APS there are no Obands in the CSF and I had Obands. I got that from a reliable site. The NIH.
Thanks again.
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I really feel for you after reading your post. Has anyone put you on a blood thinner during all of this? I have had the APS blood testing done lots of times because it mimics MS so closely I wanted to be sure. Mine have always been negative. If you are constantly getting positives then I think your first step is to start the blood thinners & see if you notice any improvement. It is concerning knowing you've got "sticky blood" & you have your docs not able to give you a definite dx of one or the other.
A good place to get information about APS is called The Hughes Foundation this is because APS has now been named after the founder Prof. Hughes. If you look at the list of symptoms on their website they actually list MS as a symptom because Hughes/APS can show almost identical symptoms. The following is the web address:- www.hughes-syndrome.org
I did a lot of research into APS before my dx & there really is a lot of misinformation out there that is confusing to both medical professionals & patients. Some docs will say silly things like "you can't have APS because you have 4 kids" because APS can cause miscarriages but most do end up carrying children to full term. I would recommend making contact with one of the online communities & asking them some of your questions. Many people have been dx'd with MS to find out they had APS.
By commencing the blood thinners you are taking care of yourself whilst the docs make up their minds. This sometimes doesn't involve any more than half an aspirin but others need to be on warfarin daily. This must be done under close supervision of you PCP at least. I do definitely think you need to see a MS Specialist in the meantime & take all of your results with you. You need to see a neurologist that is not going to be dithering about all of this & can give you some definite answers.
Do you suffer from any headaches at all? I'm not sure what was meant with the doc saying you don't display any APS symptoms because as far as I know these are very similar to MS symptoms. I am a person living with MS so my knowledge is based on my personal experience only. I look at what you've been told & I think PPMS is a dx that is not going to harm you but the APS is something that could have sudden irreversible consequences. I would be checking if there is such a thing as false positives with the testing of APS. Did you have all 3 blood tests at the same time?
I'm sorry if I'm not much help but hopefully someone else can step in with more assistance. I completely understand where your concerns are coming from & well done for being your own best advocate in trying to sort this out.
Take Care,
Karry.