Sarcoid mimicking Brain lesion & "fatty liver"?

I have a very complex and distressing symptom history and although no medical professional has ever mentioned Neurosarcoidosis it is something that's firmly on my radar. There are many reasons for me to suspect neurosarcoidosis but I wont go into all the details here but feel free to ask me any specific questions if you think it's relevant. However, I will say that many of neurological symptoms are also MS like in nature.

A bit of history

Four years ago I was found to have a brain tumour which has been alternately described as a low grade glial tumor or DNET (a benign non-growing mass). I only know I have a tumour because I PAID a neuro to look for it! My GP had insisted I was just anxious and consistently dismissed my symptoms. This is why I was forced to go down the private route. But now that they know I have a tumour the national health service (I'm in the UK) is compelled to give me free biannual brain scans to monitor the lesion for growth.

Since the discovery of the tumor I developed other health conditions which led to Gastric investigations and a diagnosis of diverticulosis and "fatty liver".

At around the same I also developed a blood clot (DVT) in my lower leg.

I also had a chest x-ray for chronic upper back pain which revealed some lung scarring. My GP says it is nothing to worry about and is possibly from a childhood lung infection. This is nonsense, of course.

I have now been chronically ill with indiscribably horrible physical and neurological symptoms for the past 4 years. And I'm still being dismissed by my neurological who seems incapable of contemplating that I have a medical illness at all. All they do is scan me and tell me I don't have epilepsy. And, of course, now they are pushing me down the psychiatric route.

OK. So here are my questions.

It it possible for the neuros to be wrong about my brain lesion? Could it possibly be a brain sarcoid that is mimicking a brain tumor?

How about my lung scarring? I have never had TB or any lung infection. Where did this come from? Could I have had sarc in the lungs without symptoms in the past?

Fatty Liver? I don't feel I'm a candidate for this condition. Is it possible for liver sarc to be mistaken for FTD?

As for diverticulosis, I have heard this mentioned in the context of sarcoidosis before.

Also, can sarcoidosis cause blood clotting issues?

I also have visual disturbances similar to neuritis and recently acute tinnitus with hearing loss. Should also mention that I have also developed chronic vertigo and stroke like symptoms.

I'm sorry, I meant to keep this brief but nobody is helping me. Once the doctors get it into their heads that you're crazy the communication breaks down and hopelessness sinks in. I hate to go back to my GP for more specific referrals. I would rather beg and borrow and go to see a private neurologist again that deals with the rarer conditions. My experience has been that doctors only really LISTEN when you pay them to.

Any help or guidance would be appreciated. My situation is far far worse than I'm letting on here. Thank-you.

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23 replies. Join the discussion

I don't have an answer for your questions, sorry. What I do have is a fatty liver. Many people do. In most cases it is nothing to worry about and you can't do anything about it except improve your eating habits.

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Thanks for your input. I mentioned the fatty liver because it's such an unusual find. I've never eaten unhealthily or been overweight. It's the least of my worries right now, to be honest.

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Gonna tell u about my boyfriend who has neuro sarc.. well we kept going to doctors and they kept sending him home. They said maybe he had diverticulitis bc of all the stomach/ gastro problems. They said maybe it was prostate problems bc of the sudden dysfunction. They said maybe MS because of the lack of control he was having with writing and the tremors/ numbness. Oh and they didn't know why the vision was blurring. They kept saying he was fine until he caught a blood clot in his lung. Then they said something must be wrong. They then started and it took roughly 9 months to say sarc and 6 more months to get the meds that he needed and really state it was neuro sarc. While he did have a little scarring on his lungs he had lesions on his brain identified in an mri and bc he had such a great dr they knew what treatment to implement.

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Fred,

Have you ever had hepatitus &/or enjoyed a tipple. Either reason I beleive could lead to a fatty liver. Many sarkies are diagnosed with fatty livers & cortico-steroids could also be a reason.

While I beleive you are onto something especially re mimicking, most is theoretical and few here can put out any degree of scientific discussion on the topic, especially me.

Around the world, all suffer from ignorant & uncaring doctors. This is why Sarc Clinics are so important. You have atleast 5 in England including Royal Brompton & Royal Free. In Australia, where I am, there is no Sarc Clinic, I have been struggling with government & bureaucrats to establish our first sarc clinic. Make use of your Sarc Clinics. They are our best hope.

cheers

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I should've mentioned I don't drink and I've never been diagnosed with Hepatitis.

I do have a sarc specialist in mind that practices at the Royal Free and I will try and get referred to him for a second opinion. Even if I don't have sarc, I think a doctor who treats the rarer diseases is likely to be more open minded and take your physical symptoms more seriously. Thanks for your reply.

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Hi nitt121.
I'm glad to hear your BF got his diagnosis. It's interesting about the stomach problems and blood clots. Did anyone tell him that his blood clot is directly related to the sarc? I had a DVT in my calf at around the same time as my stomach problems and neurological flare ups. They treated me for it and later told me I had a hereditory factor that made me more prone to clotting. I'm really not sure how all of this ties in together. I just hope I'm lucky enough to find a good doctor like your boyfriend seems to have done.

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No they said they didn't understand why he had a clot at 40... they tried to say it was from travelling for long hours.. but that was all bs..they still ignored the headaches, stomach aches, night sweats, off balance and blurred vision..

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I was diagnosed with intra-hepatic stones and fatty liver disease. I had elevated liver enzymes, also, that were unexplainable for several years prior to my diagnosis. We ran every lab test under the sun other than an actual biopsy.

I have read that a radiologist who does not know he is looking at a sarc patient OR who is simply not familiar with sarc, cannot distinguish between FLD and liver sarc on a CT, because they look the same. Also, there is no such thing as Liver Stones.

Interestingly, as soon as I went on prednisone, my liver enzymes returned to normal and the *liver stones* shrunk. I still have FLD, according to my PCP, but I'm headed to CC after the first of the year. It's very likely that I will fire every physician I have when I get back, because I don't have time for them to *get familiar* while my life slips away from me at an alarming rate of speed.

I so far haven't found anyone who is familiar with liver sarc in my area, so if you have a sarc specialist that you can get to, I'd strongly recommend it.

I also wonder, do you have elevated liver enzymes? Elevated cholesterol or triglycerides? Someone was posting the other day, I think it was Pris, that an inflammed liver can also lead to these other conditions and all the special diets and drugs in the world won't fix it until you fix the inflammation.

HTH

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Hi Melle.

Thanks for that useful info. Very interesting about the imaging interpretation.

Yes, my liver numbers have been sporadically high or borderline high over the years. A few years ago I had high LFT for a while even when my liver looked normal under Ultrasound. Although recently I've been told they are back to normal levels.

Not to gross you out, but I know for a fact that there is a functional problem with my liver or bile delivery because I pass pale stools which nobody seems at all concerned about. Except me.

I think my step is definitely to see the sarc consultant.

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hi GPhX

thanks for researching that for me.

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Fred9- I'm sorry to hear about all of your issues. I, too, am trying to unravel all this crap and dealing with A@@HOLE docs. I have elevated liver enzymes for years. Finally got a "fatty liver" diagnosis, but how do they know it's not sarc right? I like you also believe I have neurosarc and my Pulm. just keeps focusing on my recently diagnosed asthma. What is with docs. I have severe chest pain (feels like it's in my heart) and pain in upper back/lung area. Can I ask you what you mean by stroke like symptoms? Is it shooting pains in your chest? I also have all the abdominal issues with bad cramps in upper right and left and pains in my sides and what feels like pain under my ribs. I have so much back pain it's aweful.
If you find any answers please keep us posted!
Marn32

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Hi I have sark and on 12/6/10 after leaving my sark doctor went to the emegency room and found out i have a blood clot i in my left leg was shock. All my problems are on left side of by body. They told me if i had waited two more days it would had travel to my lungs which is where my sark started. I ask was the blood clot apart of sark the doctor said it would be rare. But my brother suffered with clots and told me it has to do with his blood. The liver has elevated enzymes and my primary insist that i see a specailist because i am still continueing to loose weight and i am on prednesone. My ultrasound report showed fatty liver. I believe its apart of sark. i have numbness in my left fingers and left feet they are always cold. I have notice that i am off balance when i walk and almost trip overmyself and nothing is in the way. when i drive i notice that i can stay in my lane i am alway moving to the right and cars are always blowing at me. I dont even want to think of neuro.

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Interesting discussion. Jashley, I too drift to the right when I drive and passengers in my car or other cars on my right are a constant reminder I'm doing it. I'm really focusing on working on that.

My neuro did nothing other than watch me walk and send me for an MRI which he says is unremarkable. Some small lesions but he says they are non-specific which only means he has no idea why they are there. But it does nothing to explain the neuro like symptoms. Very difficult. For example, my opthamologist says no sarc in eyes but definitely having eye problems. Symptoms mimic MS but of course all the docs say it's unlikely to have both. Frankly I'm tired of feeling like my neuros (I've seen three) are humoring me. It would also be nice to know why I fall and trip often, brain fog and headaches for which I take Neurontin.

I realize that sarc and/or ms and fibro are all about treating the symptoms but if the docs don't acknowledge the symptoms they sure as heck can't manage them.

One Day at a Time. I try not to think too far in the future because I feel like things are just getting worse and it's so hard to know what is causing the symptoms. Neuros just keep saying with a shrug of their shoulders that "sarc is a systemic disease". No kidding.

When I originally was diagnosed two years ago I was told that the sarc would disappear. No way.

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Hi Marn,

Stroke like symptoms I'm describing are like mini brain Transient Ischmetic attacks. I have a lot of head symptoms. Chest pains, yes. The type that would have ordinary people rushing to ER 3 times a day, but now I just ignore it. I just think, do your worst. I'm too fed up with this. I also sometimes have tachycardia alternating with bradycardia. I explain my symptoms to my GP and he just stares at me. The best he did was to send me for a treadmill test. Everything I say is framed under anxiety and depression. I don't even bother to argue anymore. It's hopeless. My problems are a lot more complicated than that, but I'm trying to keep my posts as short as possible.

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Aunt betty. I can't think 5 minutes ahead. I don't how I'm going to feel from one minute to the next. My neuro also did the basic walking tests. He saw I was unsteady with the heal-to-toe business but wouldn't acknowledge anything was wrong. I can't say I've had a proper neuro work up yet. It's such a painfully slow process trying to get a diagnosis. I wish you the best.

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Fred9:
marn32:
AuntBev:
I have neuro-sarc. Many of the same symptoms all of you mention except the "fattyliver". Nothing showed on my Brain MRI, my cardiologist said about the same thing about my chest CT as yours did Fred9. After a total of 11 drs, including 2 neurologist that finally said something was wrong but, they didn't know what...thank God for their honesty...sent me to a Medical University to a Prof. of Neurology that did the muscle/nerve test. "EMG" that is shock torture, and doing a Muscle Biopsy Incision found I had Sarcoidosis in the nerves and muscles...Neuro-Sarcoidosis.
I have the shortness of breath (it takes muscles to breath), vision problems (had a temporary blindness in the right eye and than blurred vision & double vision for 2-3 days, Glaucoma, Uvitis, virtious floaters), hearing decrease,(not just volumn but words were jumbled at times.) pain in upper right side of stomach under the rib cage (after several test including endoscopy and after Sarc dx, it was determined it was the sarc not letting the bile duct digest food as needed). Muscle weakness so bad that after a walk to the mailbox it feels like I have concrete blocks tied to my feet. Its in my sinuses and bladder. I know I have missed several symptoms. Nearly everything fluncuates. The night sweats, headaches, blood pressure, etc. I'm on Prednisone and Imuran (Just to name a fraction of meds) since last Feb, 2010 that they keep changing and not much better. But at my age I don't expect a lot of change. For you that catch it at a younger age, you have remission to look forward to. May God bless you all with answers and better health in 2011. Ella

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Hey Fred, I'll outline my hist for you because I feel we have similarities, 07- facial siezure-thought was bells palsy, 07- siezure- granuloma removed from brain-diag..TB treated 4 nine mths, 08 - growth on spine affecting left leg-dia..Tb treated for 9 months, 2010-distorted vision, numbness in head and face..finally diag.. narc sarc. So now I'm on predisone to control the inflamation aas it was too close to my pituitary. Every new scan seems to reflect more lesions in my kidneys though so my main focus is on my diet right now. It's a constant journey of cause and effects, but hey, it helps bide the time at night, right

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Blaize,
you need another opinion to sort out if this is TB related or Sarcoid related stuff going on as they are often indistiguishable without Biopsy to confirm one or the other. I say this because steroids will make TB WORSE as they stop the immune response allowing the TB bacterium to go crazy it is the culprit. optic neuritis can be caused by this as can uveitis and other eye conditions. TB can attack just about every thing in ones body.
there are ocular immunologists, very specialized opthalmologists who might be able to help you sort this out who treat inflammatory eye diseases. I urge you to get a consultation with one of them if at all possible to make sure your eyes are Ok.
not all opthalmologists are created equal in knowledge or ability to treat with anything but corticosteroids.
a list of these specialists can be found at http://www.uveitis.org located in the PATIENT information section of the site on the various SPECIALIST lists for the USA as well as for internationally. most are located at Major University teaching Hospitals around the world and are professors of opthalmology and ocular immunology.

wishing you the very best,
Mike Bartolatz

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thanks Mike, the sarc diagnosis is the final one through the process of elimilation, so the issue I had with the vision and numbness (after 18 mths of TB treatment) proved that TB and TB medication were not the answer. I have been blessed, however to be treated by DR. Irene Valnek in the Opthmology Department at St. Mike's in Toronto, her attention and care gives me some comfort as I battle this neuro optho system thing. One thing though. that I'm learning, is that there are many different
symptoms with regards to neuro sarc,, just doing this post is taking me forever because I cant find words, my thoughts get lost, I'm generally sorta hazy sometimes, is this the condition or the meds. Confused as usual ; )

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