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Diagnostic process and questions for surgeons (Read 9296 times)
Tabby911
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Re: Diagnostic process and questions for surgeons
Reply #50 - Dec 6th, 2008 at 1:56pm
 
I know that MM is suppose to be rare, but my mother at age 28 was diagnosed in the mid 80's. In the late 90's two of her sister's were diagnosed as well, one being in her late 30's and the other in her mid 40's. Both of them were tested back in the 80's and came back negative. I have been tested twice with negative results. I am concerned though, seems to be adult onset in my family. I have been unable to get an answer as to whether I should be rechecked every so often. I am 35 now and right in the age zone of my aunts.

Does anyone have information for this type of incident and whether being tested every so often is a good idea in my case?
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Michele
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Re: Diagnostic process and questions for surgeons
Reply #51 - Dec 6th, 2008 at 6:30pm
 
Can I ask exactly how you "got tested" just curious!
God Bless
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mlgohsman
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Re: Diagnostic process and questions for surgeons
Reply #52 - Dec 6th, 2008 at 6:35pm
 
I would call a doctor who knows about moyamoya and see what they suggest, I think you should probably if it makes you feel better about knowing whats going on, ask to get a angio or ct angio. every year. thats what I would do, if family had it, and wanted to be sure i did not have it, I am going to get my kids checked, even if they have no signs, because i have it
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Sta-Mca bypass June 27th 2008 Smiley Ruptured aneurysm, 10-04-08
repaired 10-06-08 and one aneurysm 10-11-08 clipped 10-20-08
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Tabby911
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Re: Diagnostic process and questions for surgeons
Reply #53 - Dec 7th, 2008 at 8:37am
 
First test was done when I was 15 and that was an ultrasound of the carotid arteries. The second one was an MRI about 10 years ago. I live in New Hampshire and do not believe there are many doctors in the area with much MM experience. I tried contacting one in Boston, but never received a call back.
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Michele
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Re: Diagnostic process and questions for surgeons
Reply #54 - Dec 7th, 2008 at 4:28pm
 
In my personal experience, I had an untrasound of the carotid (my neck) which of course showed nothing.  That isn't where the blockage is!  I then had 3 MRI's ordered by 3 different doctors at 3 different facilities.  That aslo showed nothing but the stroke.  I was very insistent that I "just knew" there was something the Dr.'s were missing.  My doctors as well as much of my family just acted like I was a hypochondriac, withthe exception of my primary doctor, who never gave up on me!  Finally the MRA was ordered by the nuero.  His attitude was almost like if I wasn't gonna quit complaining then he would keep ordering expensive tests until I did.  When I finally had an MRA, the blockage was VERY evident (black and white to be exact).  On the MRA, one side of my brain was completely black, indicating no blood flow past the carotid.  The other side is not quite as bad, with some blood flow evident.  After INSISTING their must be a blockage on the other side too, because the TIA's are affecting both sides, the nuero ordered another MRA (I think he just didn't want to admit that he missed the blockage shown on the first MRA) and diagnosed billateral moyamoya.  Every time I went back to my nuero he had a new group of students with him.  He would ask them the same question evertime (with a smirk), "Have you ever seen moyamoya?" Then he would pull up the pictures and watch their faces with a grin.  The students would always respond the same way..."Where is it?" as they gazed at the blackness that should be my brain.  If you have been around medical professionals enough, you learn that when they say something is "quite remarkable", that is NOT a good thing.  They are saying, you have this bad! Of course I left every appointment in tears because this is the same nuero that doesn't believe in the surgery, and refuses to order an angio to fully see what is going on.  The last time I saw him, I asked him about the surgery and the angio, and he jut explained away all my concerns and desire for surgery.  He acted like I was crazy for wanting brain surgery.  All of this happened in front of a group of students.  Unfortunately, that is the next generation of nueros that will probably treat their patients the same way.  On a side note, I am actively "nuero shopping!"  LOL 
I know Stanford is conducting some genetic research, and you can probably participate, but you don't get any results from the genetic testing.  It is only for their research purposes.  I don't know if any genetic markers for moyamoya have been positively identified, or if you could get tested.  I do know the MRI's which didn't show anything were about $5,000 a piece and the MRA's were about $7,000.  For most, that is a pretty expensive "precautionary" test.  I saw somewhere on here that an angio was $45,000.  That is just insane, and anyone with "half a brain" can see that....LOL  (Unless it was a typo!)    
How unfortunate that we have all this technology for medical purposes and then deny people the benefits of it because of finances.
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Re: Diagnostic process and questions for surgeons
Reply #55 - Jan 4th, 2009 at 9:31pm
 
I would like your opinions on something that is happening right now in my family... My brother's 5-year-old daughter was admitted into the hospital yesterday and is undergoing tests as we speak... A few days ago she complained of her left hand going numb... then the numbness gradually moved to other parts of her right side (arm, leg, eye, mouth)... later she was noticing some very slight numbing of her right arm... Also, while whe was sleeping, her parents were noticing her left leg jerking...
The doctors have done a ct scan, which turned up nothing, and are now doing a 24-hr EEG (which is in progress)... next up is an MRI...
Does any of this ring true to any of you in connection with possible MM?
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Re: Diagnostic process and questions for surgeons
Reply #56 - Jan 5th, 2009 at 3:28pm
 
Hi,
I'm so very sorry to hear that your young niece is having troubles. The fact that her numbness is occurring on only one side of her body has probably clued her doctor's into the possibility of her having TIAs or strokes. Unfortunately the CAT scan typically will show bleeding in a brain artery (a hemorrhagic stroke), but doesn't pick up on an ischemic stroke caused by a temporary blockage in a brain artery. The MRI/MRA does a better job of showing that.

Young children with Moyamoya Disease are most likely to experience ischemic stroke as opposed to hemorrhagic stroke.

When I dashed to the local hospital after experiencing temporary periods of numbness on my left side, a CAT scan was performed which showed nothing, though an MRI/MRA, a week later, showed I'd had a couple of small strokes.

Hospitals tend to do the CAT scan first as it is quick, less expensive and doesn't require as specialized a technician to administer. The MRA also requires an injection of dye to which a small number of people have an allergic reaction. Because the CAT scan means exposure to radiation and is a less effective diagnostic tool, I personally insist on an MRI/MRA instead of a CAT scan.

I'm sure there must be many causes other than Moyamoya for what your niece is experiencing. But, if her doctors haven't yet suggested Moyamoya as a possible cause, than I think it would be a good idea to ask them to consider it.

Most doctor's have absolutely no knowledge of Moyamoya disease, so you might suggest that your brother send her MRI/MRA and any other images to Dr. Steinberg at Stanford Medical Center and Moyamoya Clinc. He'll review them and give is recommendation at no expense.

Please, tell you brother not to wait! If she does have Moyamoya Disease, than she could be at risk of a stroke, possibly a devastating one.

I pray that your niece will be fine and return to health quickly.

Kim
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Re: Diagnostic process and questions for surgeons
Reply #57 - Jan 7th, 2009 at 3:53pm
 
Hi Kim,

I was just recently diagnosed with MM on Dec. 22nd (that was not the gift I was expecting).  I also had numbing on my left fingers and face.  Through the MRI they discovered that I had several small spots on the right side of my brain which my dr. said were old scaring.  He then ordered additional MRI's, then the brain specht and angio which confirmed my MM.  It seems from what I've read doing various research that most cases of MM are found after someone has suffered a major stroke and therefore have surgery quickly to attempt to fix the blood flow issue.  In my case, the dr's aren't in that much of a rush it seems and it sounds like you are or were at a similar stage as I am now.  I'm wondering how long ago were you diagnosed and which procedures did the Dr's perform?  My next appt. is with another surgeon to see if I'm a candidate for angioplasty.  Was that an option for you?  I haven't come across any information where that was an option for MMer's.  If I'm not a cadidate, my dr. said then we can discuss what my options would be but he did indicate that I didn't have to do surgery right away and it was up to me to decide if I wanted to wait.  It appears that MM does not get better, just worse, so I'm not sure if waiting would be a good idea.  I am currently on Plavix and aspirin until we decide on the next steps.  Love to hear your thoughts.  Thank you for your time.

Suni
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ter
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Re: Diagnostic process and questions for surgeons
Reply #58 - Jan 7th, 2009 at 4:55pm
 

    You sound very similar to my wife.  She was having similar symptoms, headaches tingling and numbness.  She never had a stroke or tia's to out knowledge.  She was diagnosed in sept 08. We were told to go on plavix and monitor it.  We read more about mm and how it is progressive and the progression rates vary from person to person.  We chose to get a second opinion from Dr. Scott in Boston in oct.  He said that the only thing to do was surgery. She was scheduled for surgery the end of dec.  She had her second surgery a week ago and is doing great.  We chose to see someone that was a mm specialist because we found that it was such a rare disease that not many neurosurgeons wanted to touch it.  In fact we are from philly and none here was performing surgeries.  Dr. Scott operated on his first mm patient in 1982.  He has a ton of experience.  I would recomend you see someone with that kind of experience.

Terry
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Re: Diagnostic process and questions for surgeons
Reply #59 - Jan 7th, 2009 at 7:17pm
 
Hi, Smiley Welcome to our MM family!

Iíd like to respond to franknmagís and Suniís posts. First off, to answer frank&magís question,
ďDoes any of this ring true in connection with possible MM?Ē
Most definitely, without a doubt! Also, the tests youíve described thatís been done so far will not actually show MMD. The definitive test is the ďangiogramĒ. A MM experienced doctor may recognize the possibility of a MM diagnosis on an MRI, but they would then order the Angio to confirm it. The MRI shows if there were any strokes. Your brother's daughterís symptoms are identical to MM or TIAís, which is common with MM. I donít know her specifics, but her symptoms may be warnings of the lack of proper blood flow to her brain and warnings of a possible stroke. I agree with Terry 100%!! I canít emphasize enough the importance of getting an experienced MM neurosurgeon.

As you know, MM is a progressive disease, it gets worse over time. With MM, a patient is ALWAYS at risk for a stroke or hemorrhage, so prompt treatment is always very important! Delay in treatment is the particular pitfall we see every day because of the lack of experience and understanding of this disease in the medical community, and delay in treatment is dangerous and risky. With MMD, you know a stroke is coming, you just donít know when it will happen. We see all too often many doctors who lack MM experience, tell their patients they can wait for treatment or they tell them not to have surgery at this time or that the surgery is too risky, but what many new patients do NOT know is, although you may like your neurologist/neurosurgeon, and they may be very good, but we have seen in many cases that they are NOT educated enough about MM ďthe disease itselfĒ, which makes the "risk" more about their LACK of MM knowledge, rather than actual risk to the patient, and whatís important to know is, surgical management is the ONLY successful treatment for MMD, so dealing with a rare disease, experience is everything for success, IMO.

And Suni, youíre absolutely correct in your research and concerns thus far. When a doctor delays MM treatment and tells you itís up to you to decide your options, thatís exactly what I mean when I say many doctors do NOT have enough MM experience. †Why, when your symptoms are that of a stroke, would any MM experienced doctor say you could wait?? Wait for what, to have a stroke?? This disease is progressive, so I just donít get it!! †Youíre very wise in your concern about this. My advice is always to do the research. The facts are there. If you arm yourself with knowledge, they canít steer you in the wrong direction.

You also have the option of sending a copy of your films to a MM specialist to view for a second opinion. Theyíll read your films and give you their expert opinion. Unfortunately, there are only a few MM specialists out there that deal with this disease on a daily basis. Like Terry said, Dr. Scott in Boston, is one, and Dr. Steinberg in California, is †the other, but MM specialists are out there and could guide you in the right direction.

My thoughts and prayers are with you.

Mar
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hrsridermom
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Re: Diagnostic process and questions for surgeons
Reply #60 - Jan 7th, 2009 at 8:52pm
 
Suni,  where do you live?  We are in Florida and I think Dr. Lewis at Shands will also look at your films and offer an opinion.  Destin had her surgery the same day you got your diagnosis!  She also did not have a stroke and we chose not to wait for one.  She only had the right side done as the left is in pretty good shape...we will just have to watch and see if the MM progresses on that side.  I would definitely consider the surgery...meds alone don't prevent the strokes.
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Michele
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Re: Diagnostic process and questions for surgeons
Reply #61 - Jan 10th, 2009 at 6:48pm
 
Does anyone know for sure if this Dr. at Shands will reviews films for free? 
Thanks,
Michele
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hrsridermom
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Re: Diagnostic process and questions for surgeons
Reply #62 - Jan 11th, 2009 at 8:45am
 
I can't say for sure...I think he will.  I know when I called his office to set up an appointment they got right back to me.  I got an appointment right away since we live so close so I can't remember if I sent him Destin's films or just took them with me.  Here is the number to his office.  Shana is his office assistant and she's very helpful.  I would just call and ask her.    1-352-273-9000
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Re: Diagnostic process and questions for surgeons
Reply #63 - Jan 11th, 2009 at 11:29pm
 
Hi Suni,
I'm sorry that I didn't respond sooner to your post. I just now read it and didn't want to let another moment pass.
With Moyamoya disease time is always of the essence
. The "old scars" that your doctor mentioned are most likely where your brain has suffered small strokes. Those brain cells have been destroyed. It does sound like your symptoms are similar to what I experienced. Many folks, though not enough, have been able to catch this disease before they have a massive stroke. We're the lucky ones, but only if you take action now.

The neurologist who I first saw wanted to put me on plavix and aspirin and watch to see how the disease progressed. He told me I was likely to have a major stroke within three years and that he would then consider placing a stint (via angioplasty). Great, let my brain turn to mush then treat it... Needless to say after much more research and consulting with two neurosurgeons who had actual experience with Moyamoya, I learned that
stinting the MCA would have caused a major stroke
.
Please send your films to a Moyamoya specialist. Far, far too many neurologists have no problems making recommendations about our brain, when their own brain contains no real knowledge of this disease.

My first small stroke, tingling in fingers of left hand and left upper lip, was on July 6, 2007. MRI/MRA followed several weeks later, then diagnostic tests for blood flow, blood tests, an angiogram followed by the discussion I mentioned above with the neurologist during the first week of October, 2007 - this doctor was in no hurry. Following that discussion, I immediately sent my films to Dr. Steinberg in Stanford and had an appointment with Dr. Newell in Seattle. Had first STA/MCA by pass in Stanford on Oct 31, 2007 and second on Nov 7, 2007. My left MCA was 100% blocked and my right MCA nearly so, and other of the arteries typically affected by Moyamoya were blocked to some degree as well. Neither of these doctors who are familiar with Moyamoya recommended waiting for any period of time. I'm cognitively and physically better than before the surgeries. Other than a very slight weakness in my left hand (mostly thumb and index finger) and then only when over tired or stressed, I have no residual effects from the stroke.

You want to catch this disease before it has a chance to cause major damage. I'm not a doctor and can only speak from my own experience, but it seems to me the fact that you've already had some brain damage due to your Moyamoya would indicate that you don't have a lot of time to play with. If those smaller, collateral moyamoya vessels were doing an adequate job of getting the blood to your brain, it wouldn't now have those scars.

I know this must be scary for you, it was for me. But the good news is that your Moyamoya can be treated and you can have a long, healthy future.
Kim
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Re: Diagnostic process and questions for surgeons
Reply #64 - Jan 13th, 2009 at 7:11pm
 
Thank you everyone for your response and information.  It really does help to know that I'm not alone in this.  Time is definately not on my side so I want to get moving.  I spoke to Dr. Steinberg's Office yesterday and will be sending my films for his review and opinion.  I spoke to Jill in his Office and she is an angel.  Dr. Steinberg will review and give his opinion at no cost in case any one was wondering.  I do have an appt. with my neuro on the 23rd and I have a list of questions and concerns, even more so now that you've all been so helpful.  I can't tell if the tension from my head is from the stress or the MM.  Does anyone else hear a whooshing sound in there ears ?  I'm wondering if that's a MM thing?

Thanks again,

Suni
Long Beach, CA
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Michele
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Re: Diagnostic process and questions for surgeons
Reply #65 - Jan 13th, 2009 at 10:57pm
 
I feel a whooshing in my neck! But no clots have ever been found there!
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Re: Diagnostic process and questions for surgeons
Reply #66 - Jan 14th, 2009 at 12:02pm
 
Hi Suni,

Iím so glad to hear youíre getting an expert opinion. Youíll find Stanford to be the best there is, IMO, and youíll confidently know the best path to take for your particular case. Itís so very wise to get a second opinion. It saves lives.

esyou wrote on Jan 13th, 2009 at 7:11pm:
†Does anyone else hear a whooshing sound in there ears ? †I'm wondering if that's a MM thing?

In regard to your question about the swooshing noise, itís been discussed here many times over the years. Here are some of the threads and posts referring to it:

Swooshing soundsMay 26th, 2005, 1:45pm
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1117128826

Heart racing in my head !!!
Mar 2nd, 2006, 1:59pm
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1141325957

continuation"THUMP NOISES"Feb 3rd, 2006, 3:21pm
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1138998083

Please keep us postedÖ

Keeping you in my thoughts and prayers.

Mar
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Re: Diagnostic process and questions for surgeons
Reply #67 - Jan 14th, 2009 at 2:43pm
 
Mar and Michelle, thanks so much for your feed back and Mar, thanks for the links on the swooshing.  I'm not crazy!  I would mention it to my Dr's and they looked at me like I was crazy. 

Suni
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Re: Diagnostic process and questions for surgeons
Reply #68 - Jan 17th, 2009 at 7:59pm
 
Hi Suni,
Me too with the whooshing. I heard it a lot at night before falling to sleep. Then, after surgery it went away. Now I hear it sometimes at night, but seldom and not nearly as loudly. When I saw Dr. Steinberg during my six-month checkup, he wondered if I was able to hear the blood whooshing through my grafts. As when he put the doppler up to them you could hear the pulse of the blood flow all the way across the room. So, I don't know, maybe the whooshing isn't neccesarily be a bad thing.
Kim
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Re: Diagnostic process and questions for surgeons
Reply #69 - Jan 20th, 2009 at 3:24am
 
Kim,

The wooshing is so loud when I'm about to go to sleep that it keeps me up.  I've had the wooshing for atleast 2 years.  That's scary considering I've probably been walking around with MM for years and didn't know it.  I hope the surgery helps although I'm not sure when that will be.  I'm meeting with my neuro on Friday. 

Take care,

Suni
Long Beach, CA
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Re: Diagnostic process and questions for surgeons
Reply #70 - Jan 20th, 2009 at 6:29pm
 
Hi Suni,
Best of luck with your nero visit on Friday.
Kim
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Re: Diagnostic process and questions for surgeons
Reply #71 - Mar 17th, 2009 at 4:07pm
 
Thank you so much for this info.  I just got done talking to my sister and the doctors are due to show up any minute.  I gave her all the questions to ask and she wanted me to pass on a thank you from her.  She said she didn't even know what to ask.  We are very new to this disease and all of you have been such a help.   DJ thank you from the bottom of my heart for this web site.
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Re: Diagnostic process and questions for surgeons
Reply #72 - Mar 24th, 2009 at 10:56pm
 
Hello everyone,  My sister (juls 38) was told she has MoyaMoya Arthropathy and this is a rare type of MayoMayo.  Are there different questions for the type of MayoMayo?  My uderstanding is if you have this disease that surgery is the only option.  I gave my sister all the questions to ask but the doctors are telling her this is a special kind of MayoMayo.  They have her on steriods to "bring down the swelling" but no surgery talk yet.  And the doctors said its not a question of if she will have another stroke but when.  So I guess what I am asking is there something I'm missing?

Thanks so much
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Re: Diagnostic process and questions for surgeons
Reply #73 - Mar 25th, 2009 at 12:32am
 
Hi Kimberly,

Perhaps Juls doctors are waiting for her to get stable before they mention surgery at all, I don't know, but I gotta tell ya, I admit I donít know your sisters specifics, and Iím not a doctor, but common sense tells me, if any doctor on earth said ďits not a question of if she will have another stroke but whenĒ thatís says that itís serious enough to know sheís at risk for a devastating stroke or God forbid worse, and thatís what you want to avoid if at all possible, and surgery is the only hope with MM to date.

I personally never heard of a rare type of Moyamoya. I always understood that if you have MM, you already have a rare disease that is progressive and life threatening. I never heard of an even more rare or more serious type, itís urgent enough as it is, but it really doesnít matter if there is or isnít, because the facts are, without surgery, the majority of MM patients will experience mental decline and multiple strokes because of the progressive narrowing of arteries. †So youíre correct in that surgery is the only option to help avoid that from happening.

As far as the term Arthropathy that you mentioned, I always thought it was a blanket term used to refer to diseases of the joints, so how itís associated with MMD I have no idea. I donít know how much MM experience your sistersí doctors have, but IMO, I couldnít get a second opinion fast enough if I were in her shoes. It could only confirm what you know now or perhaps save her life. You have nothing to lose. We always advise a second opinion because unfortunately we see a lot of doctors in the medical community without enough MM experience and perhaps thatís whatís missing. Knowing that this is a rare disease and knowing the facts about it, I would want to be sure I was on the best path.

Smiley
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Re: Diagnostic process and questions for surgeons
Reply #74 - Mar 25th, 2009 at 12:49am
 
I have never heard of this before, so a quick google search resulted in this definition.
Arthropathy is a blanket term which is used to refer to diseases of the joints. There are a number of different forms of arthropathy with a variety of causes which require different approaches to treatment. Arthropathy can be quite painful, especially in some cases, and it usually requires treatment to inhibit further degeneration of the joint. Staying active and eating a balanced diet can help to reduce the risk of arthropathy, along with other illnesses.

The symptoms of arthropathy vary, depending on the root cause. In many cases, patients feel pain around their joints, and the joints may also feel somewhat stiff. In the case of neuropathic arthropathy, however, these symptoms are reversed, with patients experiencing a loss of sensation around the joint due to nerve damage. People with certain illnesses and over a certain age are at an increased risk of diseased joints, and their doctors will usually keep an eye on their joint health for this very reason, checking for signs of arthropathy regularly.

Another common form of arthropathy is crystal arthropathy, which involves the deposition of crystals into the joint. This form is associated with gout, a painful condition in which crystals of uric acid accumulate in certain joints of the patient. Patients with diabetes are also at risk of associated arthropathy, as are patients with irritable bowel disease.

In addition to being caused by an ongoing medical problem, arthropathy can also be the result of an infection or inflammation of the joint, or latent infection somewhere in the body. This is known as reactive arthropathy, and like all infections, it requires treatment to ensure that it does not spread. Reactive arthropathy can be caused by a malfunction of the immune system as it responds to an infection elsewhere in the body, and an arthropathy with no known cause may be a signal of an infection which requires attention.

In another form of arthropathy, facet arthropathy, back pain is caused as the facet joints of the back experience degeneration and inflammation. This condition can be extremely uncomfortable, often requiring a period of rest and the use of several medications to try to bring the inflammation and associated pain down. In extreme cases, this form of arthropathy may require surgical treatment.
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