Auto-immune disease ???

[pepperderr]

I have antiphospolipid antibody syndrome. If you don't know what it is, it is simular to lupus but also causes blood clots too from what I understand. I had a stillbirth due to blood clots which lead to the diagnoses a few years afterwards by my OBGYN when I was pregnant again.

I have had problems and am not really being treated because no doctor around here knows anything about APS. The hematologist I went to said I didn't have it even though several blood tests proved I did (along with the clots and stillbirth). The people I know with the APS said the doctor read the results wrong and my levels were over 2 times what a normal level should be so I definitely do have it.

Last summer I had mini stroke symptoms. For a few months before the stroke, I would forget in the middle of a sentence what I was saying. I thought it was old age. even though I am only 38. I didn't know it was related to APS because other than heparin during pregnancy I wasn't being treated. I was told APS only affects you when you are pregnant. They were soo wrong.

I eventually got really bad with memory loss and confusion, and numbness on one side among other things. Still the doctor I went to didn't believe it was a stoke because she didn't know what APS was. She did send me for an MRI which I had done, but the cancled my appointment to see the doctor the day before I was supposed to go so I never went back.

Anyway, last summer I am assuming it was like a flare for me or else just from the sun, I am not sure, but I was in such pain for weeks and would get rashes and welts and itching. I was just constantly worn out and in pain. I am afraid if it comes back this summer, I will be terrible at disney due to the heat.

The memory loss and going the wrong way/saying wrong words, I have been able to just put up with and deal with (because I am tired of going to doctors who don't believe me). That just comes and goes and at the moment I am fine. I just never know when it is going to really be bad.

Is there any pre-planning I should do to help make out trip a little better if I do have a flare while I am there? I have never used a wheel chair or electric vehicle thank God. I surely don't want to have to use one at disney but if my pain is as bad as last summer or if I get sooo worn out like I did last year just doing nothing, I might have to have DH push me in a wheel chair. I would not want to ruin it for my kids or my DH.

Do you have any recommendations at all? I might go and be perfectly fine (I hope) but it is just still in the back of my mind how sick I was last summer and I can't imagine putting up with that at disney too. Thanks.

 

[mgilmer]

I asked my DW to read your post. She was diagnosed with APS about 15 years ago and is a nurse. She said that your stroke-like symptoms are not typical for APS and that you need to see a neurologist asap. She asked if you had been checked for MS?

 

[PatMcDuck]

My 16 year old daughter has APS, along with Juvenile Dermatomyositis and several other things. For the APS, she is on long term Coumadin medication. (She had to have hip surgery from Avasular necrosis, caused by steroids for the JDM. She had a pulmonary embolism after that hip surgery, that's when they found the APS).

DD is on ALOT of medication, and also has some memory problems. We will see a neurologist in 2 weeks.

Good luck to you!

 

[pepperderr]

She said that your stroke-like symptoms are not typical for APS and that you need to see a neurologist asap. She asked if you had been checked for MS?

Blood clots and strokes are the main symptom the get people diagnosed with APS and not lupus. For your DW to say that strokes are not common in APS is just proof that not many people in the healthcare field know anything about APS. That is why I am not being treated right now. I can't find a doctor that knows anything about it. The OBGYN that did all the tests and diagnosed me knew about it because she was a high risk OBGYN and deals with APS patients. I no longer go to her because I am not pregnant and also because she is no longer working around here. My Gynocologist I see knows about it but not enough to treat it, just enough to know the symptoms I guess.

When my son was sooo sick as a baby and no one could figure out why, I asked if it could be that he had APS too. I was told no, because he is a boy and APS only affects you when you are pregnant so if he had it it doesn't matter. It wasn't until a long time later that I found out that that is not true at all. I was no where near being pregnant when I started having all my symptoms. I happened to find an APS group online and they were the ones that set me straight .

I believe when they did the MRI it was to check for MS. I guess mini-strokes don't show up on an MRI. But as I said, they cancled my appointment to discuss the results with my doctor the day before I was to go. I have no idea why they cancled it, but I was just so frustrated being sick and no one believing me or knowing what was wrong that I just gave up. I never made another appointment to go back.

There is a you tube video with a little about what APS is here

As the video says, some people go most of there life with no other problems which may be is the case with your wife. I went a LONG time with no symptoms after I was first diagnosed but now my symptoms are a lot more frequent and noticable to me, I just haven't had any other strokes that I know of...Like I said, I don't think the doc I went to belives my symptoms were from a TIA but I think they are. I am otherwise healthy so she would have no reason to think I would have a TIA if she doesn't know that APS can cause them.

 

[mgilmer]

Blood clots and strokes are the main symptom the get people diagnosed with APS and not lupus. For your DW to say that strokes are not common in APS is just proof that not many people in the healthcare field know anything about APS.

Again, from my wife: This is just plain wrong. While clotting problems and strokes may be one of the symptoms used to assess for APS, it is wrong to say most APS sufferers have strokes. The most common diagnostic features are mid to late term miscarriages and peripheral clots. This is not to say that people afflicted with APS cannot have strokes - some do, but it is just plain wrong to say most do or will have them. And strokes should appear in MRI of the brain if permanent damage occurs as a result. And it is also true that APS can occur in either sex but predominates in females.

My wife's diagnosis occurred back when most doctors did not even know what APS was. We suffered through 5 late term miscarriages and went to several doctors before her current doctor found the cause -- APS. She went on Heparin treatment (a very rare treatment for pregnant women in 1993) and we were able to have our son. I remember it well. The twice daily injections of Heparin, the weekly blood clotting tests, the weekly doctor visits. It was hell. My wife, thanks to her doctor, did a lot of independent research on APS when there was very little in the medical literature. I dare say she knows more about APS from a medical standpoint than most doctors. By the way, the doctor who diagnosed her is a Rheumatologist. Most doctors who do the research in this condition are in that field.


What is antiphospholipid syndrome?

The antiphospholipid syndrome is a disorder of the immune system that is characterized by excessive clotting of blood and/or certain complications of pregnancy (premature miscarriages, unexplained fetal death, or premature birth) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) in the blood. Patients with antiphospholipid syndrome have developed abnormal symptoms while having antiphospholipid antibodies that are detectable with blood testing.

Antiphospholipid syndrome is also called phospholipid antibody syndrome. Antiphospholipid syndrome has been referred to as Hughes syndrome in honor of the doctor who first described it.

It is important to note that antiphospholipid antibodies can also be found in the blood of individuals without any disease process. In fact, antiphospholipid antibodies have been reported in approximately 2% of the normal population. Harmless antiphospholipid antibodies can be detected in the blood for a brief period occasionally in association with a wide variety of conditions, including bacterial, viral (hepatitis, HIV), and parasite (malaria) infections. Certain drugs can cause antiphospholipid antibodies to be produced in the blood, including antibiotics, cocaine, hydralazine, procainamide, and quinine.

Nevertheless, the antiphospholipid antibody (a protein) is not considered a normal blood protein and has been found in patients to be associated with a number of illnesses. These illnesses include abnormal clotting (thrombosis) of arteries (stroke, infarction) and/or veins (phlebitis), premature miscarriages (spontaneous abortions), abnormally low blood platelet counts (thrombocytopenia), purplish mottling discoloration of the skin (livedo reticularis), migraine headaches, and a rare form of inflammation of the nervous tissue of the brain or spinal cord, called transverse myelitis. Antiphospholipid antibodies have also been detected in over half of patients with the immune disease systemic lupus erythematosus.

Researchers are recently also finding that there are patients with slowly progressive memory problems and patients with a form of "atypical multiple sclerosis" and antiphospholipid antibodies detectable in their blood.

(This is why my wife asked about MS, BTW)

Bucciarelli S., et al. Mortality in the Catastrophic Antiphospholipid Syndrome. Arthritis & Rheumatism 2006;2568-76.

 

[pepperderr]

I am sure you wife knows a lot about it more than I do. I didn't post about it to argue with anyone, but I never said that strokes were the main symptom of APS. I said that having strokes and blood clots are what get people diagnosed with APS and not just lupus because APS is simular to lupus and just about every doctor knows about lupus but hardly any of them know about APS since it is newer.

I also never said that strokes don't show up on an MRI. I said TIA's (mini-strokes)don't.

I am sorry I ever brought it up.

 

[HonnyDipp]

I have Polymyositis. Its also an auto immune disease where the immune system attacks the muscles. In 2006, my body got weaker and I lost the ablility to walk, climb stairs, or even get out of chairs. I have spent the last 9 months of my life in and out of rehab and stuck in bed. By the way, I'm a divorced 30 year old woman with 3 young kids. Now that I'm learning to walk again, we are planning our first vacation in 4 years to Disney this November. I have already made a ressie for an ECV, but I'm still a little afraid about what to expect. But I'm trying to keep good thoughts!

 

[Eeyore's Tiara]

Hi
First let me give you a hug for all your frustration! It took nearly 5 years for me to get a diagnosis because it's not what everyone looks for. I have a rare autoimmune. Lupus and MS are the big ones that get all the press and coverage. How many times did I wish I had Lupus or MS, anything that could be identified and treated quickly...
Not that I actually wanted anything... But that did sound kind of like that didnt it???

When you have a "rare" disease, you do get treated like it's all in your head. Because unless you are seeing a specialist who has a small idea of what you are going through, they won't understand what you are trying to say to them.

Even now when I go in and report weird things that are happening to me they say, "Well, that's not a normal symptom of this disease." And then later, "Well, we are finding out that certain symptoms have now been associated with this disease...."

My doctor, a rheumatologist, and I have a running joke about how I don't react normally to drugs, have normal symptoms, or respond in the normal way to treatment. I told him I was special. He says that all his patients say that!

I would say you really need to find a rheumatologist to speak with. They are your lifeline when you are trying to find out what is happening with your immune system. I do have a neuro, pulmonologist, internist, ENT, and others. That comes usually after your diagnosis to help with the problems that will be popping up.

When this first started, they tested me multiple times for Multiple Sclerosis. I asked the neuro how I could have almost all the symptoms for MS and not have the disease. His answer was that most autoimmunes have the EXACT same symptoms which make it very hard to distinguish them from one another. Only certain aspects set them apart. So anyone who has an autoimmune is in the same boat, from the rare to the common. And as far as I am concerned, it's a leaky darn boat and I want off!

As far as planning for a trip, I make sure I have a medic alert tag and card to identify any medications I am on and any allergies I have. It also lets them know my doctors phone numbers and any diagnosis that I have been given at this point. I always carry spare medication and try to plan my trip so that I will have an idea of where I'm going to be on each day so that I can plan for any pitfalls. Make sure you take lots of water to help you stay hydrated and cool and get as much rest as humanely possible in Disney. And I get lots of wonderful ideas from my disfriends who have problems like mine! I have now developed lung problems and I had to ask people on here advice so that I'd be prepared for something I've never experienced before.

Have an awesome trip, and please promise that you will seek out a rheumatologist. He/She can send you on to the neuro if necessary. And try to find a good internist, they are concerned about your whole body and will help keep track of what all your docs are doing!

Good luck!

 

[pepperderr]

I guess one thing I am wondering is if I need it, how hard is it to get a wheel chair once we are there? I don't want to plan for it or reserve one and then not need it. I don't want to use it if I don't have to, I just don't want to ruin it for the rest of the family if I can barely walk due to pain or weakness like I have had before. Can you rent them at the parks just like a stroller?

I don't know if it is from the APS or not but I have had many times where I get out of breath extreamly easy. It is not painfull and I can breath, I just get to where I feel like I can't take a deep breath. I had it really bad with each pregnancy and really bad after my second pregnancy. I had to have surgery and they thought I got a blood clot in my lung. I have had it at other times besides being pregnant though. I am just hoping none of this comes up while at disney. At least for me, the symptoms come and go and I never know when or for how long they will last. Can I just rent a wheel chair at disney like you rent a stroller? Do you get them near where you get a stroller?

Thanks Tiara and good luck on your trip honnydipp! hugs.

 

[bopper]

Anyway, last summer I am assuming it was like a flare for me or else just from the sun, I am not sure, but I was in such pain for weeks and would get rashes and welts and itching. I was just constantly worn out and in pain. I am afraid if it comes back this summer, I will be terrible at disney due to the heat.

A question: Were you taking ibuprofen at the time you were in the sun? I take ibuprofen all the time, but if I am at WDW (and therefore more exposed to sun) I break out into a rash as it can make you photosensitive.

 

[Schmeck]

Yes, you can rent a wheelchair at WDW at the same place as the strollers. They may run out of them (not as quickly as an ECV though) and you cannot use it outside of the parks.

You'd probably get more of a response towards how to make your WDW trip easier if you posted this question on the regular disABILITIES board instead of the community one, BTW.

I hope you have a pain-free, fabulous trip!

 

[Cheshire Figment]

Please ask the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[PatMcDuck]

My daughter sees a rheumatologist for the Juvenile dermatomyositis, but sees a hematologist for the APS. Managing the Coumadin is a big job, DD usually needs to get her INR checked weekly. (Tuesday it was a whopping 6.4! They try and keep it between 2 and 3)

We have a make a wish trip coming up, and I think she will need a wheelchair for that.

 

[SueM in MN]

Can you rent them at the parks just like a stroller?

Yes. You can rent them at the parks just like you rent strollers. They are at the same places as strollers are rented.
There is usually not a problem with them running out of wheelchairs, but if you plan to rent an ECV (motorized mobility scooter), they may run out.
There is more information about renting in the disABILITIES FAQs thread.
But, also keep in mind that if you wait until you are feeling exhausted, you may not have energy left to have a good time at the parks.
And, exhaustion one day carries over to the next day (like a negative balance in your checkbook); if you keep using up energy, you get more and more 'overdrawn.
If you plan on renting day to day, I would also suggest taking along the phone number for one or more of the off-site rental places. That way, if it turns out that you feel like you need a wheelchair more, you would at least have an option to renting from the parks.

 

[Piper]

The most important advise I can give you (I have been dealing with this for most of my life) is to listen to your body and to pace yourself. If you completely wear out, you will be able to do much less for the next day or so----but if you "save" a little energy and have it left at the end of the day, then you can probably do as much the next day.

Only you know how you feel and what signs tell you to slow down. Listen to that inner voice!

 

[pepperderr]

A question: Were you taking ibuprofen at the time you were in the sun? I take ibuprofen all the time, but if I am at WDW (and therefore more exposed to sun) I break out into a rash as it can make you photosensitive.

I reallly don't think it was from ibuprofen because I have gotten it before at different times even when not taking any meds, but I will definitely think about that if it happens again. Thanks.

 

[greenpea89]

I'm so sorry to hear that your doctors aren't able to help you. As a fellow Hughes Syndrome sufferer it is vital that you find a doctor to diagnose/treat you immediately. In the US I am treated at the Mayo Clinic. I don't know if you are close to one of their facilities but if you are not you can call them and they may be able to help you find a specialist in your area. Alternatively, I have heard that the Cleveland Clinic has APLS specialists, or, if it would be easier, you can access a list of doctors, by state, that work with APLS patients on the Hughes Syndrome website.
With all due respect to the previous poster whose wife is a nurse, TIAs (what I think you are calling a mini-stroke), strokes, and pulmonary embolisms can be caused by active APLS and both strokes and pulmonary embolisms can be life threatening. A TIA does not always show up on an MRI after the blood clot has dissolved if the clot did not cause permanent damage. Multiple TIAs can cause brain damage that will appear on an MRI but you may have been lucky.
Multiple miscarriage, TIAs, strokes, heart attacks, and blood clots are hallmarks of active APLS. Fortunately, most Hughes Syndrome patients will not have these severe health problems - multiple miscarriage is the most common symptom and usually the only one that patients will experience . This is a disorder that is easily treated with baby aspirin, warfarin/coumodin, or heparin. Please see your doctor before you travel. Not to frighten you or to be alarmist but if you have active APLS as severe as you are describing, sitting for extended periods of time in a car or wheelchair and/or flying long distances can be dangerous for you if your INR levels are not at the proper levels. I too have had multiple miscarriages, two TIAs, and a pulmonary embolism coupled with memory loss similar to what you are describing before my doctors began treatment. Today I am totally free from symptoms as long as I monitor my INR levels and take my medication (which my doctors tell me will be for my lifetime). I don't know about the rash - I haven't had this symptom but it's possible. It is important to find out exactly what is wrong - APLS, lupus, both, or something else entirely.
Please see a doctor (my doctors are also rheumatologists although they consult with a cardiologist and a hematologist) who can diagnose you properly and arrange the appropriate treatment for you. IMHO you should do this before you go on holiday. Your family will be so much happier in the long run if you are feeling well and can enjoy your time together. Wishing you everything wonderful!
Sorry if I come across sounding bossy or obnoxious - tone is so hard to convey over the internet! I'm really just trying to be helpful.

 

[mgilmer]

With all due respect to the previous poster whose wife is a nurse, TIAs (what I think you are calling a mini-stroke), strokes, and pulmonary embolisms can be caused by active APLS and both strokes and pulmonary embolisms can be life threatening.

This is certainly true but it is not common and usually occurs only in severe cases of APLS. Most diagnosed cases of APLS are not this severe, this is all she was saying. However, my wife agrees that a rheumatologist consult is very important for anyone with this condition.

 

[noahcarter]

Hello! I also have aps and also Lupus. Fatigue and joint pain is a big problem with me and I was very worried about how it would effect me on my last trip to Disney. My doctor prescribed a prednisone burst for me to take while at Disney. It was a tremendous help! With a mid-day break, I had energy to walk around the parks. I just had to be in bed by 9:30-10:00 every night. (Yes, I did have to give up the evening EMH's!) I am so glad I was able to receive this medication! Good Luck with your trip!