What all causes white spots on MRI's besides MS?

• By ldsgirl76
• Reply 787979
• March 15, 2010 at 1:04 pm
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I am not sure where I am supposed to be posting this so others can see ... but if anyone knows anything about what can cause these white matter lesions then can you please respond?

Last night I was trying to find out on Wiki what else might be the cause of these lesions in the white matter that has shown on my MRI. Can thyroid cancer cause white matter lesions? I am not all that educated in medical jargon but it appeared that Thyroid Carcinoma (sp?) can also cause these lesions also. It looked like a type of Cancer DID cause lesions ... but I am not sure if I was reading that. Some type of cancer called MTC or Medullary (sp?) Thyroid Cancer.

• By catpurr
• Reply 788015
• March 15, 2010 at 1:29 pm
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Hi, in 2001 I was thought to have MS. MS profile #s elevated, tingling and numbness in arms and legs, weakness, severe fatigue,everything but the lesions.However, I did have "white" spots. I was told that these could be scarring from migraine headaches, a virus, etc. Then a while later, they discovered a spot in my neck where there was damage to the myelin (lining or covering of the spinal cord) indicating Transverse Cervical Myelitis,which could have been causing my symptoms...(?) Due to a number of weird symptoms over the years, the most severe; starting with my stomach feeling rw and scraped,flushing,itchy,achy,weak. I was recently diagnosed with Mastocytosis. This disease is rare and is so chaotic and wacky.No two ppl. are alike! Idk if any of this has anything to do with my earlier symptoms, but from what ive read of other ppl, anything is possible. Oh, also I have always had blood work that indicated Auto-immune disease. So... I hope my ranting hasnt been confusing. best wishes to you and if I can be of any help just let me know!.

• By catpurr
• Reply 788022
• March 15, 2010 at 1:36 pm
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I forgot to ask; what are your symptoms? and how long have you had them? I know that wondering,and not knowing can be so scary! Just know that youve come to the right place. There are so many ppl that care. I will be out for a little while this afternoon, but I will ck. back later. ; ).

• By ldsgirl76
• Reply 788025
• March 15, 2010 at 1:38 pm
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So, I have this super complicated seemingly random medical history. Wouldn't even know where to begin even if I tried, really. But, things started changing or getting worse after the birth of my 4th baby. I have had all sorts of medical problems that started when I was 9 ... but they all appeared to be seperate. So, I have been sent to all sorts of different specialists. It just seemed like when it came to medical issues and health I was just plain cursed in the respects of having so many different odd issues. I spent so much time in my early "school age" years home sick or in the hospital. And, then I would have time periods where everything seemed ok. I would get new symptoms when old ones would seem to "disappear" and no longer be a problem. But, then in my 20's I seemed to be doing much better ... feeling much better ... and finally holding down jobs. That was when I met my husband. After we got married and I started having children my health began to dive ... it got worse with each pregnancy. I didn't want to stop having children because I had been told for years that I would probably never be able to conceive and I went through numerous surgeries and hormone therapies to be able to get pregnant someday. When I conceived on my own it seemed to be a miracle ... but my health was taking a big hit. It seemed that fatigue hit in a big way ... but everyone kept telling me that was normal as a new mom ... and I chalked it up to that. But, in my second pregnancy I started hurting all over like I have never hurt before. My back and my neck hurt so very very bad. I figured that maybe I had injured my back and paying the price. My muscles started to feel "sore" all the time. My joints often hurt so very bad. And that dang fatigue. Now I had started having kidney stones back in 99 when I was a teenager and I average getting them every 2 to 3 years ever since, but now my kidney area seemed to hurt almost all the time. Not the same as passing a stone, but still hurt. Mostly on my right side, but sometimes on my left also. When my second child was only a few months old one day as I drove my vision went. It was so scary ... all of a sudden everything started to bounce .. I could hardly see. The only way I can describe what my vision did was when I think of the old TVs and how the screen used to bounce when you couldn't get good reception ... mine was doing that but in a BIG way. Also, in my third pregnancy I started having migraines ... really really really bad. My head hurt worse then anything I had ever felt. And, these migraines would last 5 to 7 days straight ... then I would get a 2 or 3 day break ... and then they would start all over again. This happened for about 2 to 3 months. I thought I would die ... my head felt like it was going to explode. I would go to the hospital and once they gave me morphine ... and it didn't even work ... then they gave me something stronger ... (delotta? sp? ) and it only worked for an hour ... I just cried. Also, I started getting bad abdominal pain in the area of the gallbladder ... that went on consistently for about 6 months ... oh it would have me on my knees in a ball. I figured I must've had gallstones ... since my Mom and her mother had them in their 30's ... but it didn't appear that I did. It seems ever since my third pregnancy I am always hurting terribly .... that was in 2006. Then when I got pregnant with my last child (this baby was a surprise) I got more sick then I had ever been. Oh, those headaches returned with a vengeance ... the abdominal pain in the right came back in the gallbladder area... as did the kidney pain. Then, all of a sudden I started shedding all of my fats in my stool ... it was so nasty. It looked like someone had dumped a pile of hamburger grease in the toilet that floated on the surface. (Sorry for being so gross.) Then as this was happening I got a strange rash. It wasn't raised but I itched like mad. It looked like someone had given me hickeys scattered all over my body. Then after a few days the rash subsided and the greasy junk in my stool went away ... and also at about that time my gallbladder area pain diminished ... it still comes back every now and then ... but it hardly plagues me anymore. I still get the kidney area pain randomly and when it hits I am on the floor often. The migraines also don't bother me as much anymore either. And, when they do never like they did in the pregnancies. Right after the birth of my last baby March 3rd of 2009 I started to immediately have really high blood pressure problems. They had to max me out on 3 different blood pressure meds (all the crappy old school ones since I was still breastfeeding) and hospitalized me for 2 weeks. My OBGYN who was a high risk OB said that I must've developed something very rare called post-partum pre-eclampsia and that it should go away ... but she didn't know how long it would last because it was so rare. I had never had a blood pressure problem before ... ever ... that was a new one. Also, while I was at the hospital after my last baby I got this MONSTROUS cold sore on my tongue. It was HUGE!!! The entire tip of my tongue was one big cold sore. Bigger then a nickel. The nurse said she had never seen anything so big. It went away after a week though. Then, at about 6 weeks after the baby was born it seemed like my blood pressure was getting better and they weaned me off my meds. At about 2 weeks after the birth of my baby I started getting this very odd deep pain in my thigh. It felt like a blood clot ... I had had a superficial clot once after my second baby and I recognized the pain. I got scared thinking that I had a blood clot in my thigh ... but it went away after 3 weeks and the docs never found a clot. I went to my neurologist (I started having myoclonic and tonic-clonic seizues when I was 17) and she was a new doc for me that I had gotten in my last pregnancy because we had moved to a new state. she was bothered by all of these new problems. They checked my blood pressure and it was really high again ... and it seems that now I have hypertension. I also would have myoclonic seizures whie I was pregnant so it was a followup to make sure my meds were right. (I haven't had a Grand Mal since 2001.) She said she felt that all of these medical problems I have had were not unrelated but part of a big puzzle. She asked me questions about my medical history that went all the way back to my Mom's pregnancy with me. She did the standard check to see if your sensations are the same on both sides of the body and as she stuck me with a safety pin it appeared that I was numb on the left side of my body all the way up to my chest. I must've been barely numb because I had had no clue until she started pricking me with a pin. I told her that my back was messed up and that's probably why I was numb. I had compressed discs in my back and ostheopenia and that was probably why and she firmly said no. That if you have numbness that goes from all the from the feet up past the waist it is usually a neurological problem. She told me that my brain MRI had many white spots and that she wanted me to go to this neuromuscular specialist ... and she also told me it was very important for me to find a good endocrinologist because she said she was really worried about my adrenal glands. She sent me to the neuromuscular dude and he did a nerve muscle test and everything appeared normal. He said he wanted to do an MRI and I told him that I had just had one done. He was happy to hear that so he went to go look at it and he came back saying that he thought he knew what was going on. He was pretty confident he had it all figured out. Iasked him what he thought it was and he plainly said MS. I told him that I wanted a happier option ... I asked him what else caused these types of white spots ... he then said that Lupus could cause them, some rare auto immune disorders, and rarely a childhood infection ... and having no older MRI to compare to he couldn't be sure if these spots were new or not. He wanted to run some blood work to rule out some things and then do a spinal mri and spinal tap if necessary. I told him that maybe it WAS from a childhood infection ... that I had spent so much of my childhood sick and that when I was in 8th grade I had had mononucleosis for 8 months. He said he was pretty confident that this was NOT from a childhood infection because I had way too many white spots that were far too big. He said it looked like a "classic MS MRI" ... whatever that means. The bloodwork showed that my ANA test was positive but very mildly positive so he felt he could rule out Lupus. The spinal MRI looked normal and there were no obliconal bands in my spinal fluid. He then said he just didn't know. I felt like he was blowing me off ... he said "well who knows ... maybe it was just from some childhood sickness ... we may never know ... but we will just have to repeat the MRI in 6 months to a year and see if there are any new spots." This was last June. I really felt like he was just blowing me off because he was soooo sure it was MS and that it wasn't MS after all. It pissed me off really. I am tired of docs saying at first that they can figure me out only to say that they can't. I then asked him if my next step should be an endocrinologist for the adrenal glands and he said that I could go in that direction but he wa actually more concerned for my kidneys since my kidneys had been causing me so much trouble for over 10 years ... he thought I should go to a nephrologist. He also thought that I might have a whole in my heart and that I should get an echo done ... and that was when my medicaid ran out ... I got on PCN which covers NO specialists and only routine medical care. So I went back to my OBGYN (who was my Primary Care doc since I had just had a baby and was new to Utah.) She said that her money was on Lupus ... she felt that was what I had. She felt that my first step should be a good Rheumatologist. And, if they don't know then I should consult a geneticist. I told her that I didn't have insurance to cover that. As my blood pressure continued to case me so much trouble as did the constant pain and fatigue she told me that she really couldn't continue to treat me ... that I needed a good specialist ... I told her that wasn't an option until April of 2010 (which I am soooooo grateful is almost here) She was sweet but said that she couldn't treat me anymore except for the OBGYN issues ... that she was out of her league. She did advise me to not get pregnant again ... it would surely kill me. That's when I got the IUD. I have been blessed with 4 beautiful children and they needed a mom more then they needed a sibling. So, now I had no doctor to treat me ... I knew I would get Aetna in April of this year ... but there were no docs that accepted PCN that would also take Aetna and I didn't want to have to change docs twice in a 6 month time period ... so I just waited. Meanwhile the pain and fatigue became more then I could bare. So, a month ago I finally found an internist that would take PCN and the Aetna come April. He was surprised that the neuromuscular guy ruled out Lupus from the blood work because he said people can have those kinds of results many times before they ANAs get high. IS that true? He wants to repeat the MRI, but I can't do that until April. He is a good doc. I really like him, but I had a sneaky feeling he would say that I would have to go somewhere else. He said he wanted me to have his office block 3 hours with him and we would get this figured out. He ran a slew of tests ... even for Lyme disease ... and nothing showed him anything. My bloodwork always appears good. Go figure.

And, finally we come down to now. Almost 3 weeks ago I woke up one day with a headache and began having MANY myoclonic seizures and noticed my thumb was numb. This bothered me ... I had had the seizures under control for a long time ... I hurt pretty bad so I took a nap. When I woke up the left side of my face was numb. I called the on call doc and he said I needed to go to the emergency room. I wondered ... am I having a stroke? Was my blood pressure too high for too long? I logically knew I couldn't possibly be having a stroke ... it just didn't seem likely. I figured it was a nerve thing. It's just that my face had never been numb before. My best friend came over and she could tell it was the left side by talking to me. The ER doc could tell it was the left side by talking to me but I could use my muscles just fine. He thought my history was fascinating and that he just didn't know. The cat scan looked fine. As I was talking to the ER doc the right side of my head started hurting. Go figure. I have pretty much been having seizure issues ever since. I went back to my doc and he admitted that he just didn't know. He said I was the kind of patient that he would advise to pack their bags and get to the Mayo Clinic if I could. I was thinking the same thing. This was now the 4th doc I think that said they couldn't figure me out. He said if I can't go to the Mayo Clinic then I needed to find a good Rheumatologist. Now I am having dizzy spells. And, the dizziness is getting worse.

I called the Mayo Clinic to set an appointment and maybe I said the wrong thing ... the lady asked me what my biggest complaint was and I didn't know how to answer that. I told her what disables me the most is the constant pain and fatigue. She then put that into the computer and told me the Mayo Clinic had nothing they could offer me!!??!!?? I said, "look I am not asking you guys to treat the problem ... just figure me out so I don't keep getting worse!" She was so rude. I said ... that is what the Mayo Clinic does right? They figure people out! I was like, "of COURSE you have something to offer me ... don't give me that." She said I would need a doctor referral. I told her no prob ... he had offered to give one ... she then said there was no guaruntee they could get me in and that their Rheumatology department wasn't taking any new patients because they didn't have enough docs to meet the demand for them. I called my doc and gave him my paitent ID # and asked him to get the referral.

Now I am like ... "OK .. now what???" If the Mayo Clinic doesn't take me ... then what? Where else CAN I go? Any ideas? I am in Utah. I know Aetna covers Mayo Clinic ... and I am pretty sure it covers John Hopkins also. Anyone?? What should I do? I am told to go see a Rheumatologist, Geneticist, Endocrinologist, Nephrologist ... and possibly a Cardiologist (never had the echo done for the possible whole in the heart.)

I can't afford to get more sick. I can't afford new symptoms. I am having such a difficult time taking care of my kids as it is. I have NO energy anymore. Even going up the stairs to take a shower often seems just too hard. My muscles always hurt terribly ... and my joints at different times cause me much grief. Last week my left shoulder hurt so bad that I couldn't even put on my coat or open a bottle of pills if I used that arm at all. The seizures continue so now I can't drive and I am having dizzy spells ALL of the time now. Urg! I am so sorry to complain. It is nice to vent.

Sommer

• By ldsgirl76
• Reply 788064
• March 15, 2010 at 2:09 pm
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I almost forgot randomly in the last year or so I have gotten huge hives all over about 4 or 5 times with no apparent reason. Just an oddity I might mention.

This new doc said that if he could guess what he felt was wrong with me is that it was definitely a connective tissue disease and most likely an overlap of 2 or 3 different connective tissue diseases. He said it was probably a Mixed Connective Tissue Disease, but since all of my bloodwork looks good that he would say that it was an Undifferentiated Connective Tissue Disease at this time.

I have had chest pain off and on for numerous years ... EEG's always look fine. But, the chest pain has been plaguing me again lately. Oh, with my blood pressure it is usually the diastolic that is too high. It would often be 140/105 but sometimes it would be 168/116. It was always crazy ... but the diastolic averaged higher then the systolic. don't know what that's all about. Before last March I have NEVER had a BP prob.

Oh yeah, yesterday at Church out of the blue while I was just casually talking to my good friend I felt like I couldn't breathe mid-sentence. I felt like I was being strangled. My throat felt like it was closed. My friend said my hands felt like ice.

When I was 9 was when I started having medical problems. I was a healthy kid happy kid. When I was 9 they discovered that my thyroid was in the wrong place and it had a huge cyst on it the size of a golf ball. They took out the cyst and had to relocate the thyroid because the arteries or veins the provided the blood supply to the thyroid were not functioning properly. When I was 16 or 17 another cyst ... a really big one ... grew back. They went in to remove the cyst, but the doc said it appeared "cystic" and had to remove the thyroid. He really thought that it was malignant, but the paperwork said there was no definite sign of malignancy. He did say in the surgery notes that there was heavy scar tissue in the neck and it was difficult to remove the thyroid.

Also, when I was in my early teens ... 13 or 14 ... they discovered that I had really advanced endometriosis. he said that there were many cysts and lesions. I ended up having 3 surgeries to keep that end in check. When I was 24ish they went in to remove my left ovary but the doc said that there was sooo much scar tissue that both ovaries look mangled and he didn't know which one would function so he left them both (he knew I really really wanted to try to have kids. ) He said that my insides looked like someone had taken a big bucket of glue and had thrown them on my insides. He said it was a mess.

On the MRI I'd had I mentioned to the neuromuscular specialist that the neurologist had mentioned that migraines and sometimes a childhood infection could cause the cysts as well. After he took one look at the MRI he said that there was NO WAY that they could be from an infection or from headaches. He said there were far too many and they were far too big. He said it look like a classic MS MRI.

I am so sorry that this history is so jumbled up. I just didn't know what all was connected and it's the current problems that are plaguing me the worst. The chronic pain, fatigue, seizures, BP issue, dizziness, headaches, and occasional random numbness. I am in sooooo much pain. And, I am sooo tired. Just going upstairs to take a shower feels like climbing a mountain.

I bet I have repeated myself. lol Please forgive me. Since the seizures have increased my memory has gotten terrible.

Thank you so much for responding so quickly.

Kindly,
Sommer

• By Poetmom
• Reply 844381
• April 22, 2010 at 4:26 am
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This probably isn't it, but I think Wilson's disease causes white spots; they are big and the scan makes it look like a Giant Panda face. I think Alzheimer's causes plaques, which I think are spots, but you are probably much too young for that. I don't know what else, but thought I would throw those out at you.

• By JMo65
• Reply 844550
• April 22, 2010 at 9:03 am
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Hi there and welcome,
I'm curious, you've had two docs look at your MRI and say that it looks like a classic MS MRI. Is there a reason that the diagnosis doesn't make sense to you? Are you willing to treat your symptoms as MS? From my experience, and it looks a lot like yours, you're dealing with a lot of symptoms that are scary and debilitating. Maybe some of the typical MS meds would help? -

• By ldsgirl76
• Reply 844956 · In reply to 844550 by JMo65
• April 22, 2010 at 12:38 pm
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They found no bands in my spinal fluid & my spinal MRI looked perfect besides osteopenia in the lower spine, but he said it definitely didn't appear to be MS. What gets me is that all of my MRI's were ordered with and without contrast, but the radiologist seemed to think that I didn't need it based on what he saw. I am thinking that maybe he thought it was better since I was breastfeeding, but I clearly told them I was pumping & dumping & using formula so that they could use the contrast. My new PCP said that they need to redo them since it's been almost a year anyway but he's going to let the Mayo Clinic do it. They are trying to get pre-approval currently for this with my insurance. My fingers are very very crossed. :P

What I figured was that if this is what caused all of my health problems all of my life ... like the kidney pain and such ... that MS couldn't cover all of the symptoms ... unless I don't understand MS. Also, I figured if MS has plagued me so all of these years wouldn't I be far more debilitated? This is why I figured Lupus. What do you think?

I just don't know these auto-immune things very well yet which is why I LOVE these websites. .

• By ldsgirl76
• Reply 844958 · In reply to 844381 by Poetmom
• April 22, 2010 at 12:39 pm
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Thank you .. I will check into that. I have never heard of it.

I so appreciate people who answer my questions and help.

• By uveitisguy
• Reply 844998
• April 22, 2010 at 1:04 pm
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the epstein barr virus can cause lesions on the brain, symptoms of encephalitis, and transversemyelitis.
other herpes family viruses can cause them too as can Lyme disease. herpes Sx causes cold sores.
sometimes conjunctivitis and uveitis can be linked to them.
sarcoidosis is another disease that can have lesions on the brain, mouth sores, lung involvement, hearing loss and arthritis. systemic lupus erythematosus can have similar symptoms as can Sjogren's syndrome, often severe dry eyes and dry mouth occur along with inflammation of the cornea, conjunctiva and uveitis.
transverse myelitis can also be found in SLE and SJogren's syndrome along with Optic neuritis. lesions on the spine can be linked to sarcoidosis too.
often the various connective tissue diseases overlap as indicated in a previous post above with mulitple organ involvement.

wish you all the very best,
Mike Bartolatz

• By ldsgirl76
• Reply 845034
• April 22, 2010 at 1:32 pm
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Thank you Mike. I used to think for sure I had Epsteing Virus because I figured if I had Mono for 8 months then Epstein might be likely since they are so closely related. I also wondered if maybe the mono was misdiagnosed, but I think they confirmed it with blood work. That was os very long ago. I was about 14. They have tested me for Epstein 2 years ago & was told I didn't have it ... but I don't know how reliable that test is. I just don't know.

I was just tested for Lyme disease and it came up negative. But I have heard that that test came be screwed up easily & some labs are famous for not doing it right.

I am not sure what all they tested for, but I did know that at one point he looked at Sarcoidosis ... but he ruled that out. Not sure why though. Something in my bloodwork looked good.

They never even suspected Herpes I think. Does it cause nose ulcers because I have had far more of those then in the mouth?

So far ... by what I've read SLE seems to fit the symptoms so very well ... but my ANA's were only 1:40 which he said was only so very mildly positive and that's why he thinks that is not likely. That is why he ruled it out.


I do occasionally have dry eyes, but not very often. I have begun in the last year to have blurry vision on occasion, but not often. Usually my eyesight is very good. I have noticed occasional blurry vision though.

Many other things you mentioned I am not familiar with and need to look up.

I would not be surprised if more then connective tissue thing is going on. My PCP mentioned that is what he thinks is going on but since he is not a specialist in this field he just doesn't know and is why he is sending me on. I love him ... he is so very nice ... but I am thinking of switching PCP's because he put me on Tramadol & Flexeril the first time I saw him about 6 weeks ago when he just saw my meds knowing I was epileptic and on meds. He almost killed me since the combination of the 2 are deadly for an epileptic. Last Thursday I was hurting so very bad & the Tramadol was all I had. I took a safe dose according to the pharmacist & not long after I suffered hundreds of seizures in the morning. Ever since Thursday my migraines are back and most of the time I have an intense excruciating headache. Oh this week has been hard. I went to a new pharmacy yesterday because Costco pharmacist neglected to warn me that Tramadol could be dangerous for me even when I asked him if it caused seizures were a side effect. He told me yes, but that he hasn't had any patients have problems with seizures. The pharmacist that I saw yesterday that both the doctor & the pharmacist didn't know. URG! I just hate to switch PCP's because he is so nice. But his office staff is horrible. I don't know.

You are so very smart on all of these things. Your responses are always so very informative. How have you learned so much? Have you had health problems that have you led to learn all of this from intense study or you linked to the medical field as well? I am sure you have told me before but my memory has gotten so much worse. I'll need to reread your profile. I am very impressed & thank you very much Mike.

Sommer

• By uveitisguy
• Reply 845307
• April 22, 2010 at 4:29 pm
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I have a form of uveitis linked to about 85 different things. I moderate vision forums for the Ocular Immunology and Uveitis foundation in Cambridge, MA USA. I have learned through this process about many things connected to my eye disease and I have symptoms but no firm diagnosis of Mixed connective tissue disease and MS. that is why I have learned too trying to figure out what is the 'underlying' condition. the thing is most autoimmune diseases respond to various chemotherapeutic immunomodulation as does the various inflammatory eye disease processes.
nose sores can be related to herpes simplex as well as to sarcoidosis so you need an evaluation for this. it can also cause keratoconjunctivitis, inflammation of the cornea and conjunctiva, the membrane adjacent to the cornea. mouth sores can also be related to Reactive arthritis and Behcet's disease both possibly linked to the IL23RN and ERAP1 genes. HLA B27 can be linked to forms of arthritis, psoriasis, crohn's and ulcerative colitis. the HLA DR2 and DR15 genes are sometimes seen in Multiple sclerosis. the HLA B51 gene is sometimes linked to Behcet's disease.
anti RO52 and ANTI NMO (neuromyelitis optica) are seen in transeverse myelitis and optic neuritis sometimes also seen in Sjogren's and SLE.
IL23RN and ERAP1 may also be seen in SLE, MS and Behcet's disease but the jury is still out on this and breast cancer.
I've put some information together on these topics at the parsplanitis forums associated with the Foundation. I can no longer post links as I've been
'warned' to stop doing so. if you wish further assistance you can private message me and I'll provide my email address.
I do my advocacy work to prevent blindness and to get patients the care they deserve. I am partially blind and disabled and don't want people to end up like me. I volunteer, getting no payment or financial support in any way. I feel that an educated person can make appropriate decisions about their care.
I've also attended an American Academy of Opthalmolgy medical profession training seminar on Ocular Inflammatory disease, it's diagnosis and treatment to include underlying disease processes, I was invited to attend by C Stephen Foster MD the Worlds very best Ocular Immunologist and founder of the Foundation. you can google all of this if you wish.
I am concerned about any vision changes you may have. severe dry eyes can cause corneal inflammation which could cause blur of vision but there are other things like uveitis which can too and only an opthalmologist can determine what is going on. please get a referral to make sure that some inflammation inside your eyes isn't the cause. if you have been seeing double, or if colors seem different out of either eye, this could be optic neuritis. the eye can be impacted with new blood vessel growth and fluid build up under the retina called cystoid macular edema which can cause blur of vision and bleeding in some instance as well as detached retina. should large black blobs appear or if a curtain closes over your vision this can be bleeding inside the eye and immediate attention by an opthalmologist is needed with potential need for surgery and endolaser to the retina to stop the bleeding or to seal the retina should it tear,

wishing you the very best,
Mike Bartolatz

• By ldsgirl76
• Reply 845846
• April 23, 2010 at 1:34 am
• Report post

Wow Mike! Thank you!

So, about all of the gene links. How would I go about looking into mine? Should I consult a geneticist because my sweet OBGYN suggested that if a Rheumatologist, Endocrinologist, or Nephrologist can't then I should seek a Geneticist. Do I ask them to look into these specific genes? Is that even possible? Is this something (do you think) that the Mayo Clinic would do?

You are right. I haven't been too concerned about my eyes, but I should make them higher priority. My mother has Glaucoma and my father has Macular Degeneration. You think I would take my eyesight a bit more seriously but it's the pain and fatigue that are so life debilitating for me that it usually takes center stage. Now that I have insurance I will make sure to add this to the list of appointments I should make.

Thank you again.

Sommer

• By Labrat613
• Reply 846755
• April 23, 2010 at 3:21 pm
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Hi
I have no idea if this is helpful, but I read an article this week on Medscape talking about white matter lesions may be related to history of intense headaches....(in addition I guess to all the other possibilities!) I don't have a link for you, but you might be able to find it by searching their web site. It does require membership (free) and a password which is easy to do and does not require personal information.

• By ldsgirl76
• Reply 847320 · In reply to 846755 by Labrat613
• April 24, 2010 at 12:05 am
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Thank you for that Mumsy. Anything or any perspective is helpful in my opinion. It helps me to see things from all possible angles. I, too, have heard that intense headaches cause white matter lesions. While looking through my medical history I found that I had a brain MRI back in 2001 and had white matter lesions show then as well. This was years before migraines were even a problem for me. I do remember having headaches and occasionally a bad one. But, my severe headaches began in 2006 in my 3rd pregnancy and I have been plagued with severe migraines ever since. No ... something else is the culprit here.

Sommer

• By Labrat613
• Reply 847391
• April 24, 2010 at 2:35 am
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Who knows. Maybe the lesions cause the headaches!! My lesions showed up first in 2004. Recent MRI's show little change although CNS symptoms didn't go into high gear until 2007. Puzzles. I was never a headache person until 2008 when slammed with a three day migraine. Dr. figured it was altitude change that was the trigger (1500-8000ft over a three day weekend). Fun vacation. Best wishes....Fran

• By ldsgirl76
• Reply 847949 · In reply to 847391 by Labrat613
• April 24, 2010 at 2:05 pm
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Very interesting idea .... the lesions causing the headaches. It makes ya think ... you know?

Yeah, my pregnancies were definitely my triggers in the beginning. I have had them relatively under control for awhile now, but ever since last Thursday where I had ALOT of seizures my headaches are back with a vengeance. Urg!

• By yockenthwaite
• Reply 848025
• April 24, 2010 at 3:57 pm
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My MRI looks like classic MS too, but my lumbar puncture was normal. I was eventually diagnosed with cerebral vasculitis, a life-threatening progressive auto-immune disease. I think I've posted about this in reply to you before.

• By yockenthwaite
• Reply 848026
• April 24, 2010 at 3:58 pm
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And a classic symptom of cerebral vasculitis is severe heaache. I didn't actually ahve those until about a decade into my disease, but I'm unusual (my symptoms were much more like MS). Headaches are a classic sign of cerebral or central nervous system vasculitis.

• By Cathy914
• Reply 849951
• April 26, 2010 at 8:27 am
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Neuro-Behcet's Disease also shows white matter on MRI both on the brain and the spine. Maybe that helps.
Cathy