Aa
MS Mis Diagnosed ?
Hi All
Well I have kind of a dilemma, not sure if it is good or not,
or if i should be happy about it,
I had a follow up appointment with my MS specialist and Neuro, as a lot of you know i was recently in hospital with a MS flare, where i had the IV Solumedrol, and it helped me a lot,
My Neuro last month had decided to start me on predisone 60mg a day, and i have never felt so good in all my life,
so it is obviously helping me,
Anyway, going back to the follow up, my Neuro and MS Specialist now do not believe I have MS at all, but it is Sarcoidosis, My Biopsies have confirmed this in multiple organs,
But at the same time the MRI's and all the other tests, also confirmed MS, back in December last year
I guess i do not know why i am posting, probably thinking out loud,
I mean i am going to very happy if it is not MS, means i will never have to go back on the dreaded Shots, ( I came off them about a month ago due to adverse reactions)
What I wondering is, how common would it be to mis diagnosed, and as the two diseases seem to be very similar in symptoms, though Sarc shows lesions in the brain similar to MS, I also have them in my spine, which is not so common in sarc,
I am not too happy about being on the Prednisone at large doses, it is a horrible drug and takes it toll on the body but I know that is usually the first line of defense
I guess what i am really asking, what if this diagnosis is wrong too,
I feel I want to give up going to doctors appointments etc, and just try to live my life, the best way i can,
and deal with each thing that comes along on a day to day basis,
I know I do not have a life threatening illness, tests would have surely showed that,
so would be be a good idea just to forget doctors, etc, and try to deal with whats going on, in my own way, like there was nothing wrong, and life my life as well as i can
Thanks
Tyler
Well I have kind of a dilemma, not sure if it is good or not,
or if i should be happy about it,
I had a follow up appointment with my MS specialist and Neuro, as a lot of you know i was recently in hospital with a MS flare, where i had the IV Solumedrol, and it helped me a lot,
My Neuro last month had decided to start me on predisone 60mg a day, and i have never felt so good in all my life,
so it is obviously helping me,
Anyway, going back to the follow up, my Neuro and MS Specialist now do not believe I have MS at all, but it is Sarcoidosis, My Biopsies have confirmed this in multiple organs,
But at the same time the MRI's and all the other tests, also confirmed MS, back in December last year
I guess i do not know why i am posting, probably thinking out loud,
I mean i am going to very happy if it is not MS, means i will never have to go back on the dreaded Shots, ( I came off them about a month ago due to adverse reactions)
What I wondering is, how common would it be to mis diagnosed, and as the two diseases seem to be very similar in symptoms, though Sarc shows lesions in the brain similar to MS, I also have them in my spine, which is not so common in sarc,
I am not too happy about being on the Prednisone at large doses, it is a horrible drug and takes it toll on the body but I know that is usually the first line of defense
I guess what i am really asking, what if this diagnosis is wrong too,
I feel I want to give up going to doctors appointments etc, and just try to live my life, the best way i can,
and deal with each thing that comes along on a day to day basis,
I know I do not have a life threatening illness, tests would have surely showed that,
so would be be a good idea just to forget doctors, etc, and try to deal with whats going on, in my own way, like there was nothing wrong, and life my life as well as i can
Thanks
Tyler
Hey Tonya
Yes your right the prednisone will be up and down, but they said they are gonna keep it at 60mg now for 6 months instead of three, not sure i am too happy about that
The weight gain is horrible and the moon face, well i have never had such a fat me in all my life,
so will see if they will perhaps cut it down sooner rather than later
Will Pm you on the other forum too
Tyler
Yes your right the prednisone will be up and down, but they said they are gonna keep it at 60mg now for 6 months instead of three, not sure i am too happy about that
The weight gain is horrible and the moon face, well i have never had such a fat me in all my life,
so will see if they will perhaps cut it down sooner rather than later
Will Pm you on the other forum too
Tyler
Hi There Quix
So nice to see you back, i was kinda getting worried about how you were, and i have been keeping track on your progress, I hope you will be feeling better soon, sure sounds like you have been through the wringer yourself,
Yes Quix I read STAY HERE and i will be, you guys have been awesome, actually had i not found this site, i would probably have given up on docs after my first visit with the quack neuro who told me i had TIA's,
So all in all I have you guys to thanks, for me finding another neuro who cared and was not going to give up till he found out what was wrong,
I have actually come across some of the Marshall guys writings, and was not overly impressed with them, but at the time i was learning all i could about sarcoidosis, and took everything in, a lot more info my Neuro gave me, which has been very helpful,
Yes you are right, the Prednisone would not be helping me to the extent it is, if this was MS, but with the Neuro sarc is it bringing the inflammation down the Neuro and the MS Specialist both said that, if it was MS, then the prednisone would only help so much, like you said everyone would be on it, (would that not be fantastic) people would not have to stick themselves with needles anymore)
I really wish that docs would look at sarcoidosis first ( Though I have to admit i had never heard of it) and then once that has been ruled out, go onto the more serious diseases, I mean i am not blaming my neuro at all for the Mis-diagnosis, I had every symptom in the book for MS, the MS Specialist agreed with him, so where was i supposed to go from there, but to accept the diagnosis, get on the DMD, and try to get my life in some kind of order
I am so happy in one way to have the MS Diagnosis taken away, not so happy on the neuro sarc, and the prednisone, but i tell you what, you made me laugh so hard, with the sweater with the extra boob ha ha, i may need that after all the weight i have gained is not even funny, and my body is finding it so hard to cope with the extra 20 pounds,
so that sweater may be needed just for my belly ha ha
Rest assured quix i will stay among my friends here, make no mistake about that, though i do not answer too many posts as i am not knowledgeable at all on most of the posts, I am sure learning fast about sarc, and the symptoms, and learning how to deal with them real fast too,
heck no you have never mislead me in anyway, you are one of the most knowledgeable people and i certainly respect your opinions
Take care my friend and stay well
Tyler
So nice to see you back, i was kinda getting worried about how you were, and i have been keeping track on your progress, I hope you will be feeling better soon, sure sounds like you have been through the wringer yourself,
Yes Quix I read STAY HERE and i will be, you guys have been awesome, actually had i not found this site, i would probably have given up on docs after my first visit with the quack neuro who told me i had TIA's,
So all in all I have you guys to thanks, for me finding another neuro who cared and was not going to give up till he found out what was wrong,
I have actually come across some of the Marshall guys writings, and was not overly impressed with them, but at the time i was learning all i could about sarcoidosis, and took everything in, a lot more info my Neuro gave me, which has been very helpful,
Yes you are right, the Prednisone would not be helping me to the extent it is, if this was MS, but with the Neuro sarc is it bringing the inflammation down the Neuro and the MS Specialist both said that, if it was MS, then the prednisone would only help so much, like you said everyone would be on it, (would that not be fantastic) people would not have to stick themselves with needles anymore)
I really wish that docs would look at sarcoidosis first ( Though I have to admit i had never heard of it) and then once that has been ruled out, go onto the more serious diseases, I mean i am not blaming my neuro at all for the Mis-diagnosis, I had every symptom in the book for MS, the MS Specialist agreed with him, so where was i supposed to go from there, but to accept the diagnosis, get on the DMD, and try to get my life in some kind of order
I am so happy in one way to have the MS Diagnosis taken away, not so happy on the neuro sarc, and the prednisone, but i tell you what, you made me laugh so hard, with the sweater with the extra boob ha ha, i may need that after all the weight i have gained is not even funny, and my body is finding it so hard to cope with the extra 20 pounds,
so that sweater may be needed just for my belly ha ha
Rest assured quix i will stay among my friends here, make no mistake about that, though i do not answer too many posts as i am not knowledgeable at all on most of the posts, I am sure learning fast about sarc, and the symptoms, and learning how to deal with them real fast too,
heck no you have never mislead me in anyway, you are one of the most knowledgeable people and i certainly respect your opinions
Take care my friend and stay well
Tyler
So sorry that you have been through such an emotional roller coaster. we did kinda figure this is where it was going though :( YES, vitamin D...A no, no for Sarcoid......I am sure you remember seeing that on our Sarcoid Forum ;) Have you had yours checked lately? That would be the D-125? Is that right...I will have to go back and look.
And of course as you may remember, until they can get some things under some kind of control, The Steroids are going to be increased, decreased, increased, decreased! So goes the life w/ Sarcoid!
Actually go back to the FSR Forum and there is a specific test for the Vit D......Please STAY here, BUT.... make sure you start to LEAN BACK on the FSR Forum as well.....They are really going to be a BIG help for you right now.
I will see you you over on that Forum too :)
Please keep your Chin Up! Everything's going to be alright!
I will PM you over on the other Forum for some additional info that may be of big help for you.....
Take Care my Friend,
~Tonya
Well, well well. I would like to do a whole dissertation here about what little I know about this topic, but you guys have done a wonderful discussion.
I will try to hit some of the questions I found. But, first, you MUST (read that MUST!!!) stay here with us. We've already bonded to you and you wouldn't want to damage us by walking away. We will allow you to talk to others if you must, but this is your first home. For those oldies on the forum, you know that, if needed, I will knit a whole body suit and stick you to a wall on the forum in the Greek House (Hypo Gamma Chondria) so you can't leave. Mob Family Rules, you know. The problem is I have trouble with my pattern and am likely to forget an armhole or knit in three boobs. It's true. Others will tell you. Besides we need people like you to let newbies know that all that looks like MS is NOT MS necessarily. Other diagnoses we have seen here have included Lyme, Adult Still's Disease, Lupus, Sjogrens, Cancer with Paraqneoplastic Disorder, Myasthenia Gravis, Mitochondrial Disease, Unusual forms of Muscular Dystrophy, Neurosarcoidosis, CIPD, and I'm sure there are others.
NeuroSarcoidosis, along with Lyme Disease and Sjogren's Syndrome with neuro involvement can be the mimics that look the most like MS, so it is not hard to see that MS might have been confused. I try to bring these up with people that have other kinds of symptoms or are having trouble getting diagnosed.
One of the places that Neurosarcoid causes lesions is at the edge of the brain in the lining of the brain called the meninges. A brain lesion there is a strong clue that the diagnosis should look for signs of Sarcoid granulomas. The ACE is a great test, in that, if it is high it is good info. A certain number of people have Sarcoidosis, but normal ACE level.
Even though that source listed a dose of steroids that is "appropriate for MS" I disagree that ongoing use of steroids will improve MS much. That road has been down. If steroids really did improve MS that much we would all be on it. Oral steroids can do just so much. Your improvement on prednisone points toward NeuroSarcoid being much more likely.
The positive biopsy is a clincher for me. Man, evidence doesn't get much stronger than that. I agree with you that you clear do have NeuroSarcoid. Do you also have MS?? Well, there are no nevers in MS, but it would be more rare than hen's teeth for you to have both. And I'm not sure that there are any symptoms seen in MS that NeuroSarcoid can't cause.
Now, There is a theory about treating Sarcoidosis, put forth by a guy named Trevor Marshall, called the Marshall Protocol. This guy is a non-medically trained guy that supposedly cured himself and theorized that he had found the "cure" to almost all known diseases including cnacer, autoimmune and MS, Alzheimers, ALS etc. He promoted his medical protocol online years before there were any studys showing it was safe or truly effective. His followers seem to worship him like a messiah, but I think he is reckless and untrustworthy, based on his behavior. "He" states that Vitamin D is toxic to people with Sarcoid. I do not know if this is accepted by those who treat Sarcoid or not. He also states that Vitamin D is toxic to people with MS and the science of that states that he is unequivocally wrong.
I'm sure you will run across the Marshall camp in your research. Just know that his theories are just that - theories. Maybe some of it has been scientificallly proven since I last read on it about a year ago, but approach it with caution.
In general, it is accepted that about 10% of all people diagnosed with MS are misdiagnosed. This is inherent in the diagnosis of a disease that has so many manifestations.
So, you have a definite diagnosis to start from. For that, congratulations. I think I thought you were going to fall into the MS camp. If I misled you, I certainly do apologize.
Please, don't leave us! We need all our friends.
Quix
I will try to hit some of the questions I found. But, first, you MUST (read that MUST!!!) stay here with us. We've already bonded to you and you wouldn't want to damage us by walking away. We will allow you to talk to others if you must, but this is your first home. For those oldies on the forum, you know that, if needed, I will knit a whole body suit and stick you to a wall on the forum in the Greek House (Hypo Gamma Chondria) so you can't leave. Mob Family Rules, you know. The problem is I have trouble with my pattern and am likely to forget an armhole or knit in three boobs. It's true. Others will tell you. Besides we need people like you to let newbies know that all that looks like MS is NOT MS necessarily. Other diagnoses we have seen here have included Lyme, Adult Still's Disease, Lupus, Sjogrens, Cancer with Paraqneoplastic Disorder, Myasthenia Gravis, Mitochondrial Disease, Unusual forms of Muscular Dystrophy, Neurosarcoidosis, CIPD, and I'm sure there are others.
NeuroSarcoidosis, along with Lyme Disease and Sjogren's Syndrome with neuro involvement can be the mimics that look the most like MS, so it is not hard to see that MS might have been confused. I try to bring these up with people that have other kinds of symptoms or are having trouble getting diagnosed.
One of the places that Neurosarcoid causes lesions is at the edge of the brain in the lining of the brain called the meninges. A brain lesion there is a strong clue that the diagnosis should look for signs of Sarcoid granulomas. The ACE is a great test, in that, if it is high it is good info. A certain number of people have Sarcoidosis, but normal ACE level.
Even though that source listed a dose of steroids that is "appropriate for MS" I disagree that ongoing use of steroids will improve MS much. That road has been down. If steroids really did improve MS that much we would all be on it. Oral steroids can do just so much. Your improvement on prednisone points toward NeuroSarcoid being much more likely.
The positive biopsy is a clincher for me. Man, evidence doesn't get much stronger than that. I agree with you that you clear do have NeuroSarcoid. Do you also have MS?? Well, there are no nevers in MS, but it would be more rare than hen's teeth for you to have both. And I'm not sure that there are any symptoms seen in MS that NeuroSarcoid can't cause.
Now, There is a theory about treating Sarcoidosis, put forth by a guy named Trevor Marshall, called the Marshall Protocol. This guy is a non-medically trained guy that supposedly cured himself and theorized that he had found the "cure" to almost all known diseases including cnacer, autoimmune and MS, Alzheimers, ALS etc. He promoted his medical protocol online years before there were any studys showing it was safe or truly effective. His followers seem to worship him like a messiah, but I think he is reckless and untrustworthy, based on his behavior. "He" states that Vitamin D is toxic to people with Sarcoid. I do not know if this is accepted by those who treat Sarcoid or not. He also states that Vitamin D is toxic to people with MS and the science of that states that he is unequivocally wrong.
I'm sure you will run across the Marshall camp in your research. Just know that his theories are just that - theories. Maybe some of it has been scientificallly proven since I last read on it about a year ago, but approach it with caution.
In general, it is accepted that about 10% of all people diagnosed with MS are misdiagnosed. This is inherent in the diagnosis of a disease that has so many manifestations.
So, you have a definite diagnosis to start from. For that, congratulations. I think I thought you were going to fall into the MS camp. If I misled you, I certainly do apologize.
Please, don't leave us! We need all our friends.
Quix
Tyler, keep yourself surrounded with people who will support you in all the ways you will need and that includes all of us here. We really do want to keep you around and you can help us to learn more about neuro Sarc.
hugs, L
hugs, L
Hi There
Yes i too had the brain Biopsy, which tested positive for Sarcoid, I know they do this test for several diseases, it was not pleasant, but confirmed for the doc, what was going on with me,
Not everyone who has Sarcoid has it in the lungs, it can be anywhere in the body, I am unlucky as i have it in the brain, heart, lungs, liver and spleen, and the now suspect my bones
The MS Specialist has taken away the DX of MS, as feels now this is one hundred percent neuro sarc, and there is now no longer any need for me to continue seeing
him,
My Neuro and Rheumy are keeping me on the 60mg Prednisone for 6 months, as opposed to three months, and then taper from there, to see how low i can go with dosage, for a maintenance level
They are talking about changing my pain medication as the gabapentin never really a lot for the pain perhaps now we know why, as it was not MS nerve damage, though the pain i get sounds the same, electric shocks down the spine, tingling and pins and needles, you name it
Right now my balance is so off again, and i lost the vision in my left eye all of a sudden for about 2 hours another test vast ON in left eye,
So All in all i really do not know what to think, do i have MS, I know i have sarc,
Seems like the prednisone is helping me, and the weight gain *****, i feel like my body has no idea how to cope with another 20 pounds, i feel like i am 6 months pregnant, and waddle like a duck, really really ***** lol
i will keep you posted as to how things pan out, i have the Rhuemy this friday, so perhaps they will know more, and the treatment plan may change,
Tyler
Yes i too had the brain Biopsy, which tested positive for Sarcoid, I know they do this test for several diseases, it was not pleasant, but confirmed for the doc, what was going on with me,
Not everyone who has Sarcoid has it in the lungs, it can be anywhere in the body, I am unlucky as i have it in the brain, heart, lungs, liver and spleen, and the now suspect my bones
The MS Specialist has taken away the DX of MS, as feels now this is one hundred percent neuro sarc, and there is now no longer any need for me to continue seeing
him,
My Neuro and Rheumy are keeping me on the 60mg Prednisone for 6 months, as opposed to three months, and then taper from there, to see how low i can go with dosage, for a maintenance level
They are talking about changing my pain medication as the gabapentin never really a lot for the pain perhaps now we know why, as it was not MS nerve damage, though the pain i get sounds the same, electric shocks down the spine, tingling and pins and needles, you name it
Right now my balance is so off again, and i lost the vision in my left eye all of a sudden for about 2 hours another test vast ON in left eye,
So All in all i really do not know what to think, do i have MS, I know i have sarc,
Seems like the prednisone is helping me, and the weight gain *****, i feel like my body has no idea how to cope with another 20 pounds, i feel like i am 6 months pregnant, and waddle like a duck, really really ***** lol
i will keep you posted as to how things pan out, i have the Rhuemy this friday, so perhaps they will know more, and the treatment plan may change,
Tyler
Interesting thread for me.
I too had a brain biopsy, but they were looking for cancer, not sarcoid.
After sending my sample (i don't know what to call it) away to the University hospital (the locals couldn't dx) it was determined I had a demylinating, MS type of disease.
Now I am dx'd with MS, but because of something the CT picked up on my lungs, my neuro is still looking for Sarcoidosis.
He sent me to s lung specialist, who had me do a scratch test for TB which was neg., and wants to do another chest CT in Sept.
My neuro prescribed Rebif and said even if I have Sarcoid instead of or as well as MS, the DMD would not hurt me (although if I had had previous TB, it could have a negative effect)
I have not seen a Rheumatologist, only the Neuro and the lung specialist (don't know the correct term)
Good luck Tyler and keep us posted!
Mike
I too had a brain biopsy, but they were looking for cancer, not sarcoid.
After sending my sample (i don't know what to call it) away to the University hospital (the locals couldn't dx) it was determined I had a demylinating, MS type of disease.
Now I am dx'd with MS, but because of something the CT picked up on my lungs, my neuro is still looking for Sarcoidosis.
He sent me to s lung specialist, who had me do a scratch test for TB which was neg., and wants to do another chest CT in Sept.
My neuro prescribed Rebif and said even if I have Sarcoid instead of or as well as MS, the DMD would not hurt me (although if I had had previous TB, it could have a negative effect)
I have not seen a Rheumatologist, only the Neuro and the lung specialist (don't know the correct term)
Good luck Tyler and keep us posted!
Mike
Sorry I'm late getting back to this particular post.
Another COMMON misconception (I wish would go away) is that Sarcoid is a Lung disease. While this can be true and there are Many who have it in the lung or it can originate in the lungs and then goes from there. But is not Primarily a lung Disease!
So someone having a chest X-Ray that showing nothing does not mean that they could not have Sarcoid somewhere else.. My X-Rays were Normal! That is because it was in my Lymph nodes and an X-Ray could not pick that up. However it was the CT Scan that found the Granulomas.
Yes, Tyler did have a brain biopsy (she is so brave). That is why most of her docs are calling this NeuroSarcoid rather than MS. The ACE Serum test is actually a really Good test in the indication of Sarcoid. Let me add though, It can also have a nomal range if you have had Sarcoid and it has been dormant for a while.....But Yes! The ACE is a VERY good test.
PM me and I will give you that Forum info :)
Again sorry late to this post it was on either page 2 or 3......
Oh Ya, Yes, a Rheumatologist would be the Doc of choice to get the ball rolling if one suspects Sarcoid.....
~Tonya
Help! I didn't know anything about sarcoid, but now that I've looked it up, I've found that I do have some indications of it: Lately I've had a sudden, horrible, persisting bad case of what looks the the worst acne I have ever had on my face. I also have facial weakness. Also, periodic hives for no reason.
But my spinal fluid is normal. Also my chest x-rays are always normal. Also had a recent normal CT scan (abdomen & pelvis).
Have not had an ACE done yet since I just learned about it as a tool to help diagnose sarcoid. But I also read it could be unreliable.
Did I read right that Tyler had a brain biopsy done for it? Hey if they can brain-biopsy for sarcoid, why can't they biopsy to confirm neuro conditions like ALS or MS?
Don't think I would OK a brain biopsy unless they're gonna check for everything!
Would you please give me the web address for the sarcoid community?
One last question: Would a rheumatologist be the one to go to for a sarcoid evaluation?
Thanks for any help you can provide!
WAF
But my spinal fluid is normal. Also my chest x-rays are always normal. Also had a recent normal CT scan (abdomen & pelvis).
Have not had an ACE done yet since I just learned about it as a tool to help diagnose sarcoid. But I also read it could be unreliable.
Did I read right that Tyler had a brain biopsy done for it? Hey if they can brain-biopsy for sarcoid, why can't they biopsy to confirm neuro conditions like ALS or MS?
Don't think I would OK a brain biopsy unless they're gonna check for everything!
Would you please give me the web address for the sarcoid community?
One last question: Would a rheumatologist be the one to go to for a sarcoid evaluation?
Thanks for any help you can provide!
WAF
Oh My Tyler!
Hard enough to get your head wrapped around MS, only to have to switch gears and learn about a mimic.
I'd be reeling myself. I can't add much to this discussion medically, but sure hope you will continue to be a big part of our community. We are such a melting pot. This change is proof that mimics can 'mirror' MS initially. Sarcoid is serious and I pray these two are working on a plan for you!
IYou have been through the wringer, especially with the added biopsies. Is your next appt. lined up? While you wait for it, take time to breath and wrap your head around this, and stay on with us so we can keep your spirits up!
(((hugs)))
shell
Hard enough to get your head wrapped around MS, only to have to switch gears and learn about a mimic.
I'd be reeling myself. I can't add much to this discussion medically, but sure hope you will continue to be a big part of our community. We are such a melting pot. This change is proof that mimics can 'mirror' MS initially. Sarcoid is serious and I pray these two are working on a plan for you!
IYou have been through the wringer, especially with the added biopsies. Is your next appt. lined up? While you wait for it, take time to breath and wrap your head around this, and stay on with us so we can keep your spirits up!
(((hugs)))
shell
Hi Tyler, I cannot add anything medical and there seem to be lots of people who have given you great advice on teh forum. My only experience is that My Mum had sarcoidosis when I was a little girl and I think she was in her 30's. I have never forgotten how ill she was.
Her legs swelled badly and she was in bed for weeks. She had steroids and later developed asthma before she was 40. She is not 73 and going strong but has very thin skin from ongoing steroid treament for asthma.
So not sure what I have added except that I think for you it is really important to get some clarity about your dx. I wd guess it is unlikely that you would be diagnosed with sarcoidosis if there was not good medical evidence but as others have said although unlikely. cdould it be possible that you also have MS.
I sense and understand your desire to ditch this dx.....and I wish I had my old body back and not this one which is unpredictable and gets soooo tired.So good luck, take care of yourself and I hope you are supported on youor journey.
With love, Sarah x
Her legs swelled badly and she was in bed for weeks. She had steroids and later developed asthma before she was 40. She is not 73 and going strong but has very thin skin from ongoing steroid treament for asthma.
So not sure what I have added except that I think for you it is really important to get some clarity about your dx. I wd guess it is unlikely that you would be diagnosed with sarcoidosis if there was not good medical evidence but as others have said although unlikely. cdould it be possible that you also have MS.
I sense and understand your desire to ditch this dx.....and I wish I had my old body back and not this one which is unpredictable and gets soooo tired.So good luck, take care of yourself and I hope you are supported on youor journey.
With love, Sarah x
Hi Tonya
Up again with cramps, darn it all anyways lol
Yes my Ace levels when i finally found them on the blood work, was 116, with an H next to the number, so I take it that is high huh, would have thought the solumedrol would have brought that down a bit,
Will post on the sarcoid site too, or PM you,
Thanks
Tyler
Up again with cramps, darn it all anyways lol
Yes my Ace levels when i finally found them on the blood work, was 116, with an H next to the number, so I take it that is high huh, would have thought the solumedrol would have brought that down a bit,
Will post on the sarcoid site too, or PM you,
Thanks
Tyler
Hey there,
Sorry I am getting to your post a bit late.... Remember that since you have has all the biopsies and YES! the results have proven to be Sarcoid (seeing granulomas), then I would really lean on that vital Data.
While it is not impossible for some to have Both MS and Sacoid, I would make sure that you get the Sarcoid under some kind of control first! Perhaps the one Neuro that is saying MS does not have much experience (if any at all) w/ Saroid. That again would not be uncommon as there are Many, Many, Many, doctors out there who do not know much if anything about it.
Yes! I would say go back over to "The Other Forum (Sarcoid)" and post over there too. you know which one right? The one that we are both on. PM me again and I will tell you anoer couple of people from that Forum who went through the same situation.
My thoughts and prayers are w/ you Tyler. It is such an emotional drain to be dx with One of these let alone being told that you may have both. Have a great day
Oh ya what did your ACE result show? High?? AND, Remeber Steroids are Drug of Choice for Sarcoid!
~Tonya
Hi Tyler,
I am sorry I have not been able to read this entire page at the moment as my brain could not handle much more. I will go back thru later cuz this is me right now and I would love to work together to find out more.
I went to the neuro on Monday the 11th and he said..."with all the symptoms you are having and with your great improvement with steroids, I really think you have sarcoidosis."
I am now waiting on blood test results, MRI results, and further instruction. I am to keep taking my DMD's (lovely) until further notice. Oh and I have read that vitamin D is really, REALLY bad for people with Sarc and my neuro had me on 8000 iu of D daily. I stopped that part and I need to ask him about that. My sx's are going down hill and I need another round of steroids I know it.
With graduations coming up I am reluctant for obvious reasons :)
OK so what I asked him is what the odds of having both are. He told me that is VERY, VERY rare and he would doubt it.
My problem is, my first brain MRI stated Dawson's fingers which I thought were strictly MS lesions where the Sarc lesions look like other types of MS lesions. So I can not answer anything for you at the moment.
I can only say that we can go through this together and if you can please message me with any news or contacts on here that help you I would appreciate it.
I soooo feel for you right now and am not as far into the process. I do know that the fact that the prednisone makes you feel better is definately more sarc related that MS related.
If I have babbled or rewritten what is already posted here I apologize I just wanted to chime in.
The last post I read started by saying how amazing it is that you always find a post about your questions on here because there is always someone else out there going through this too.
Best wishes and big hugs
Talk to you soon
D
I am sorry I have not been able to read this entire page at the moment as my brain could not handle much more. I will go back thru later cuz this is me right now and I would love to work together to find out more.
I went to the neuro on Monday the 11th and he said..."with all the symptoms you are having and with your great improvement with steroids, I really think you have sarcoidosis."
I am now waiting on blood test results, MRI results, and further instruction. I am to keep taking my DMD's (lovely) until further notice. Oh and I have read that vitamin D is really, REALLY bad for people with Sarc and my neuro had me on 8000 iu of D daily. I stopped that part and I need to ask him about that. My sx's are going down hill and I need another round of steroids I know it.
With graduations coming up I am reluctant for obvious reasons :)
OK so what I asked him is what the odds of having both are. He told me that is VERY, VERY rare and he would doubt it.
My problem is, my first brain MRI stated Dawson's fingers which I thought were strictly MS lesions where the Sarc lesions look like other types of MS lesions. So I can not answer anything for you at the moment.
I can only say that we can go through this together and if you can please message me with any news or contacts on here that help you I would appreciate it.
I soooo feel for you right now and am not as far into the process. I do know that the fact that the prednisone makes you feel better is definately more sarc related that MS related.
If I have babbled or rewritten what is already posted here I apologize I just wanted to chime in.
The last post I read started by saying how amazing it is that you always find a post about your questions on here because there is always someone else out there going through this too.
Best wishes and big hugs
Talk to you soon
D
Ok, Tyler, I'll try to make this my last post to you this morning since I think I may be overdoing it, but I realized something very, very interesting and relevant to your situation:
At least one other individual who has posted on this website has had both biopsy-proven sarcoidosis and MS!! Remember Tonyad? Go to her page and you will see that her earlier diagnosis of sarcoidosis made it hard for her to get her final MS diagnosis, but that she eventually was diagnosed with MS. She also indicates that she never had to receive any treatment for her sarcoidosis.
I think you and she should talk!
Good luck to you in your quest for an accurate diagnosis!!
Hugs!
WAF
At least one other individual who has posted on this website has had both biopsy-proven sarcoidosis and MS!! Remember Tonyad? Go to her page and you will see that her earlier diagnosis of sarcoidosis made it hard for her to get her final MS diagnosis, but that she eventually was diagnosed with MS. She also indicates that she never had to receive any treatment for her sarcoidosis.
I think you and she should talk!
Good luck to you in your quest for an accurate diagnosis!!
Hugs!
WAF
Tyler,
I don't know anything about sarcoidosis. So I can't really advise regarding whether or not you should continue with the MDs regarding that issue. However, if Lulu says you should, I'd think seriously about it because Lulu is on top of EVERYTHING and I respect her opinion.
WAF
I don't know anything about sarcoidosis. So I can't really advise regarding whether or not you should continue with the MDs regarding that issue. However, if Lulu says you should, I'd think seriously about it because Lulu is on top of EVERYTHING and I respect her opinion.
WAF
Hi
We must have been posting at the same time, lol
What they are saying is is actually Neuro sarcoidosis, which presents pretty much like MS, so I am still not sure if i have the MS Diagnosis or not, one says yeah, one says no, one says i have both, I would rather have none of them lol
Yes i had the dreaded brain biopsy done, liver, lungs heart, you name it, all came back positive, for Sarc, Si I guess i do have the sarcoidosis,
I had the Iv Solumedrol for 5 days and yes that really did help me, with the on flare, or whatever they want to call it,
I was thinking of actually going to a doctor who's specialties in Sarc, might be a better bet, get some real answers, but you know, i feel like i have been through a wringer emotionally, and need to get away from it all for a while,
I see the Rheumy again on the 28 of this month, and the Neuro again in another month, and yes you are so right, i really need to sit down with them, and say ok, this is where we are going
Why do you think this is not MS, why do you believe it sarc, why do you think it both, or one or the other, and what do we do about it, treatment plan, yadda yadda,
I just do not want to be sent for even more tests, waste more of my time and money and i have say more important energy, so be told it is one thing and then the other,
I am on a good sarcoidosis site, where there is lots of support,
I may just go one last time to perhaps a sarc specialist we have one fairly near my home, and see what his thought are
Then go on a day to day basis, see how i feel
I know that sarc has it's own set of complications, that can arise left untreated, but right now i am just drained, but would never let it get worse, if symptoms arose, when i taper down on the prednisone in three months
Thanks for your input
Tyler
We must have been posting at the same time, lol
What they are saying is is actually Neuro sarcoidosis, which presents pretty much like MS, so I am still not sure if i have the MS Diagnosis or not, one says yeah, one says no, one says i have both, I would rather have none of them lol
Yes i had the dreaded brain biopsy done, liver, lungs heart, you name it, all came back positive, for Sarc, Si I guess i do have the sarcoidosis,
I had the Iv Solumedrol for 5 days and yes that really did help me, with the on flare, or whatever they want to call it,
I was thinking of actually going to a doctor who's specialties in Sarc, might be a better bet, get some real answers, but you know, i feel like i have been through a wringer emotionally, and need to get away from it all for a while,
I see the Rheumy again on the 28 of this month, and the Neuro again in another month, and yes you are so right, i really need to sit down with them, and say ok, this is where we are going
Why do you think this is not MS, why do you believe it sarc, why do you think it both, or one or the other, and what do we do about it, treatment plan, yadda yadda,
I just do not want to be sent for even more tests, waste more of my time and money and i have say more important energy, so be told it is one thing and then the other,
I am on a good sarcoidosis site, where there is lots of support,
I may just go one last time to perhaps a sarc specialist we have one fairly near my home, and see what his thought are
Then go on a day to day basis, see how i feel
I know that sarc has it's own set of complications, that can arise left untreated, but right now i am just drained, but would never let it get worse, if symptoms arose, when i taper down on the prednisone in three months
Thanks for your input
Tyler
Hey, Tyler,
After reading a statement on the above post to you asserting that 60 mg of prednisone would not be enough to help your MS symptoms and that you would need around 1000 mg of prednisone to help them, I decided to research that and found it to be incorrect.
At the following Medscape web address, you can find suggested doses of Prednisone according to the medical condition:
http://www.medscape.com/druginfo/dosage?drugid=6007&drugname=Prednisone+Oral&monotype=default
For MS that site suggests 80 mg every other day. Since your MD was giving you
a maintenance dose of 60 mg every day, rather than every other day, that is certainly consistent with the suggested maintenance dose. Additionally your MD prescribed it for you at a time he believed you had MS so he must have believed the 60 mg dosage would be effective for your MS symptoms.
It is best to avoid high doses of steroids (which prednisone is) because steroid use has, among other things, been linked to the development of diabetes.
I am also sure there would be more recognized MS exacerbation admissions to our hospitals if MS diagnosing were not so suppressed in this country!
Hope this helps.
WAF
After reading a statement on the above post to you asserting that 60 mg of prednisone would not be enough to help your MS symptoms and that you would need around 1000 mg of prednisone to help them, I decided to research that and found it to be incorrect.
At the following Medscape web address, you can find suggested doses of Prednisone according to the medical condition:
http://www.medscape.com/druginfo/dosage?drugid=6007&drugname=Prednisone+Oral&monotype=default
For MS that site suggests 80 mg every other day. Since your MD was giving you
a maintenance dose of 60 mg every day, rather than every other day, that is certainly consistent with the suggested maintenance dose. Additionally your MD prescribed it for you at a time he believed you had MS so he must have believed the 60 mg dosage would be effective for your MS symptoms.
It is best to avoid high doses of steroids (which prednisone is) because steroid use has, among other things, been linked to the development of diabetes.
I am also sure there would be more recognized MS exacerbation admissions to our hospitals if MS diagnosing were not so suppressed in this country!
Hope this helps.
WAF
Sarcodoisis is known as an MS mimic - I was tested for Sarc along with a lot of everything else initially. We had someone else here recently have their dx changed from MS to Sarc, so this is not unusual.
From what I understand, finding a good Sarc doc can be a challenge. Getting Sarc dx'd is also a challenge, and may explain the confusion on the part of your doctors.
MommaZ is right - do not take a break now. Sarc needs to be treated and not ignored.
stay in touch with us, ok?
be well,
Lulu
From what I understand, finding a good Sarc doc can be a challenge. Getting Sarc dx'd is also a challenge, and may explain the confusion on the part of your doctors.
MommaZ is right - do not take a break now. Sarc needs to be treated and not ignored.
stay in touch with us, ok?
be well,
Lulu
Hi
Thanks for your response,
The MS Specialist say not MS, the Neuro says MS, the Rheumy says not MS,
And one says I have both, the MS specialist took away the Dx of MS the Neuro wants to keep it, the Rheumy could not care less lol
So yeah kind of a roller coaster right now,
I seem to be doing well on just the prednisone, though I am gaining a lot of weight, you know the moon face stuff and all that, (tell you what does wonders for the wrinkles all that weight on my face lol)
I guess i am just confused if it is not MS how could they have gotten it so wrong in the first place, was it just a quick easy answer, as they at the time had ruled out the mimics, (Well I thought they had)
Yes you are so right us older folks do tend to get the short end of the stick sometimes, being told oh yeah it is your age, if you smoke you drink age related yadda yadda
Heat does make me feel worse, also hot showers, makes me feel sick to my stomach,
so do not do that anymore,
I am more than happy not to have MS,
I was talking with my husband about all this last night, and he said to me to try no more docs, see how i go, over the course of the next few months, stay on the Prednisone as that seems to be working for me, he seems to agree that the emotional aspect of all this bumpy rides, seems to make whatever is going on lot worse,
So I think I have kinda decided that no more docs for a while is the course i am going to take, you are so right, all the docs want to do is, do all these very expensive tests,
and then at the end of the day really learn nothing.
On My medical records from the hospital stay is says the problem was ON, but i did not know you lost all feeling in your legs with ON (lost all use of my left leg) now even I am not dumb enough to believe that happens, with Eye problems,
Anyway will keep coming here and let u guys know what my decision brings as regards as to what is still going on, or if nothing at all
Thanks again for your response
Tyler
Thanks for your response,
The MS Specialist say not MS, the Neuro says MS, the Rheumy says not MS,
And one says I have both, the MS specialist took away the Dx of MS the Neuro wants to keep it, the Rheumy could not care less lol
So yeah kind of a roller coaster right now,
I seem to be doing well on just the prednisone, though I am gaining a lot of weight, you know the moon face stuff and all that, (tell you what does wonders for the wrinkles all that weight on my face lol)
I guess i am just confused if it is not MS how could they have gotten it so wrong in the first place, was it just a quick easy answer, as they at the time had ruled out the mimics, (Well I thought they had)
Yes you are so right us older folks do tend to get the short end of the stick sometimes, being told oh yeah it is your age, if you smoke you drink age related yadda yadda
Heat does make me feel worse, also hot showers, makes me feel sick to my stomach,
so do not do that anymore,
I am more than happy not to have MS,
I was talking with my husband about all this last night, and he said to me to try no more docs, see how i go, over the course of the next few months, stay on the Prednisone as that seems to be working for me, he seems to agree that the emotional aspect of all this bumpy rides, seems to make whatever is going on lot worse,
So I think I have kinda decided that no more docs for a while is the course i am going to take, you are so right, all the docs want to do is, do all these very expensive tests,
and then at the end of the day really learn nothing.
On My medical records from the hospital stay is says the problem was ON, but i did not know you lost all feeling in your legs with ON (lost all use of my left leg) now even I am not dumb enough to believe that happens, with Eye problems,
Anyway will keep coming here and let u guys know what my decision brings as regards as to what is still going on, or if nothing at all
Thanks again for your response
Tyler
WOW. That is such an unsual turn. I wish I knew more about Sarcoidosis to help you navigate through this turn of events. My knee jerk reaction would be to say that it wold be highly, highly unusual for someone to have both Multiple Sclerosis AND Sarcoidosis. Not impossible, but unlikely for sure.
The fact that your biopsies confirm Sarcoidosis would make me believe that is what you have, but as you say, spine lesions point to MS. (Great lot of help, aren't I?) Do you have MS symptoms?
I do know that Sarcoidosis can be a challenge to treat and there can be many complications. It has to be treated and mangaged very well. I work in admissions in a large hospital and know that we admit more patients with Sarcoidosis than for MS exacerbations.
I also would have to say that 60 mg of Prednisone would probably not make someone with MS feel relief of symptoms because it is not enough to break through the blood brain barrier. A good dose of SoluMedrol to the tune of 1000 mg is usually what is needed. (As you probably have had for treatment of MS.)
I hope that you can sit and have a good talk with your doctor/s regarding this new diagnosis. Ask them WHAT EXACTLY makes them concur that Sarcoidosis makes sense to them now. Do they think it's possible, with your past results that you ALSO have MS? Ask them to explain their reasoning fully, so that you understand. This is your health and they are your doctors. They work for you.
You can't just let this go. Now is not the time to 'just forget about doctors.' If it is Sarcoidosis (and I sure hope it's not!), you have to get the besty treatment. Maybe find someone who specializes in its treatment.
I wish you all the best, Tyler. Take care and feel well!!
Momzilla*
The fact that your biopsies confirm Sarcoidosis would make me believe that is what you have, but as you say, spine lesions point to MS. (Great lot of help, aren't I?) Do you have MS symptoms?
I do know that Sarcoidosis can be a challenge to treat and there can be many complications. It has to be treated and mangaged very well. I work in admissions in a large hospital and know that we admit more patients with Sarcoidosis than for MS exacerbations.
I also would have to say that 60 mg of Prednisone would probably not make someone with MS feel relief of symptoms because it is not enough to break through the blood brain barrier. A good dose of SoluMedrol to the tune of 1000 mg is usually what is needed. (As you probably have had for treatment of MS.)
I hope that you can sit and have a good talk with your doctor/s regarding this new diagnosis. Ask them WHAT EXACTLY makes them concur that Sarcoidosis makes sense to them now. Do they think it's possible, with your past results that you ALSO have MS? Ask them to explain their reasoning fully, so that you understand. This is your health and they are your doctors. They work for you.
You can't just let this go. Now is not the time to 'just forget about doctors.' If it is Sarcoidosis (and I sure hope it's not!), you have to get the besty treatment. Maybe find someone who specializes in its treatment.
I wish you all the best, Tyler. Take care and feel well!!
Momzilla*
Tyler,
What a roller coaster ride for you!! It must be awful to think you have the answer and then have that answer ripped away from you! The same thing happened to one of the women in the "Froup" an MS group about which a couple of books were written. She had an MS diagnosis and then the MDs at Mayo took it away from her. But she still knew she had MS so she continued to associate with her MS support group which is something you also could do. Continue to affiliate with MSers and self-treat in non-medical ways (rest, coolness, diet etc).
Sometimes, there honestly could be a misdiagnosis of MS - but you say that your MRIs confirmed MS. So there you have it: In this country, there is reluctance to diagnose us "older folke" (even tho you're a young 55) with MS. Same thing happened to Quix. Same thing is happening to me. I know that sometimes, even if the MRI markings are classic for MS, due to advanced age, it will be called something else such as "microvascular disease." You have MRI markings that say MS. Therefore, I believe your MRI findings, coupled with your symptoms, and your flare that responded to steroids, spell it out clearly: MS!
Could you possibly have both, sarcoidosis and MS? Could the biopsies be wrong? Such things have happened.
I well understand your desire to avoid doctors in the future - saving money and emotional frustration - trying to get your life back on an even keel. Today they seem to want to sell you a lot of tests and then hedge on giving a diagnosis. Lots of your money down the drain. If you could stay away from doctors, it might be the best thing for you. Or you could go outside the country for an evaluation (get books on "medical tourism" from amazon.com for info) which might be more honest than one you could get in a country where the govt. clearly does not want to pay disability.
Meanwhile, does heat affect your symptoms? If so, MS very likely. Prepare yourself for hot weather by getting a cooling vest now so you won't be back in the hospital this summer.
Hugs,
WAF
What a roller coaster ride for you!! It must be awful to think you have the answer and then have that answer ripped away from you! The same thing happened to one of the women in the "Froup" an MS group about which a couple of books were written. She had an MS diagnosis and then the MDs at Mayo took it away from her. But she still knew she had MS so she continued to associate with her MS support group which is something you also could do. Continue to affiliate with MSers and self-treat in non-medical ways (rest, coolness, diet etc).
Sometimes, there honestly could be a misdiagnosis of MS - but you say that your MRIs confirmed MS. So there you have it: In this country, there is reluctance to diagnose us "older folke" (even tho you're a young 55) with MS. Same thing happened to Quix. Same thing is happening to me. I know that sometimes, even if the MRI markings are classic for MS, due to advanced age, it will be called something else such as "microvascular disease." You have MRI markings that say MS. Therefore, I believe your MRI findings, coupled with your symptoms, and your flare that responded to steroids, spell it out clearly: MS!
Could you possibly have both, sarcoidosis and MS? Could the biopsies be wrong? Such things have happened.
I well understand your desire to avoid doctors in the future - saving money and emotional frustration - trying to get your life back on an even keel. Today they seem to want to sell you a lot of tests and then hedge on giving a diagnosis. Lots of your money down the drain. If you could stay away from doctors, it might be the best thing for you. Or you could go outside the country for an evaluation (get books on "medical tourism" from amazon.com for info) which might be more honest than one you could get in a country where the govt. clearly does not want to pay disability.
Meanwhile, does heat affect your symptoms? If so, MS very likely. Prepare yourself for hot weather by getting a cooling vest now so you won't be back in the hospital this summer.
Hugs,
WAF
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
