Doctor's visit

[Guest guest]

I took B-12 shots they didn't seem to help me any or I couldnt' tell no

difference. I eventually quit them but they may help you cause there is some

they do help!! I think it is an idividual thing there whether it is for you or

not. I haven't took any of those meds my doctor has to go with something mild

because I am sensitive to alot of stuff and can't take it!! I have had alot of

reactions to stuff. I try to find or get more natural stuff. I am on Naproxon

500 mg 4 times a day but can only take it for 2 weeks and have to go to asprins

or tylenol p.m. cause it doesn't seem to help if I don't alternate!!! Hope

this helps some!! shirley

Doctor's visit

I was back at my doctor's on Saturday. So far, my blood looks good.

We're still waiting for the ANA titer to come back though. So, I'm

leaning away from the Lupus diagnosis. But I'm not totally ruling it

out. A very cool thing is that my doctor has started to read up on

fibro, from sources he considers reliable. :-) This from the doctor

who 2 weeks ago was trying to come up with excuses for scoffing at

fibro. I'm so happy he's taking this seriously.

I have a few questions for everyone. Is anyone getting B-12

injections, and do you find that they help? I was given one on

Saturday, and could continue with them if they help. I don't know

what dosage I was given. So far, I haven't noticed a difference, but

I thought maybe it's one of those things that needs to accumulate in

you system somewhat.

Also, my doctor told me to look up Zanaflex, and gave me a few samples

(I have to talk to him again before I start them). Is anyone on this

muscle relaxant? How severe are the side effects, especially being on

Zoloft? Does it help with the muscle pain, or just relax the muscles?

Or both? I would like to try it, as I've thought for months that a

muscle relaxant would be of great benefit, but I feel I need more

info. Anyone who can, please let me know.

Thank you, and take care everyone.

[Guest guest]

writes,

>

> I have a few questions for everyone. Is anyone getting B-12

> injections, and do you find that they help? I was given one on

> Saturday, and could continue with them if they help. I don't know

> what dosage I was given. So far, I haven't noticed a difference, but

> I thought maybe it's one of those things that needs to accumulate in

> you system somewhat.

>

>

> My daughter an myself both take vitamin B-12 shots. We need them because

> we are anemic. My doctor said that you need only take a certain amount as

> if you have to much, i just washes away.

>

> A for helping, I really don't know. I will keep taking them just in case

> they do help. As far as I can tell, the only think that does much good is

> pain medication and medication to try and help me get some energy and get

> rid of some of this fatigue.

>

> I had a terriable time today. I don't know what casued it but my eyes were

> blurry and I had a terriable time trying to do simple things until I just

> gave up. I tried to write something and it took about 6 torn out pieces of

> paper to figure out that I was writeing like I was drunk. I finally typed

> it and that was fun. I couldn't spell. It was a good thing that I was

> copying something, At least they knew how to spell or at least I hope so.

> My typing is not so hot right now.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

writes,

>

> I have a few questions for everyone. Is anyone getting B-12

> injections, and do you find that they help? I was given one on

> Saturday, and could continue with them if they help. I don't know

> what dosage I was given. So far, I haven't noticed a difference, but

> I thought maybe it's one of those things that needs to accumulate in

> you system somewhat.

>

>

> My daughter an myself both take vitamin B-12 shots. We need them because

> we are anemic. My doctor said that you need only take a certain amount as

> if you have to much, i just washes away.

>

> A for helping, I really don't know. I will keep taking them just in case

> they do help. As far as I can tell, the only think that does much good is

> pain medication and medication to try and help me get some energy and get

> rid of some of this fatigue.

>

> I had a terriable time today. I don't know what casued it but my eyes were

> blurry and I had a terriable time trying to do simple things until I just

> gave up. I tried to write something and it took about 6 torn out pieces of

> paper to figure out that I was writeing like I was drunk. I finally typed

> it and that was fun. I couldn't spell. It was a good thing that I was

> copying something, At least they knew how to spell or at least I hope so.

> My typing is not so hot right now.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

writes,

>

> I have a few questions for everyone. Is anyone getting B-12

> injections, and do you find that they help? I was given one on

> Saturday, and could continue with them if they help. I don't know

> what dosage I was given. So far, I haven't noticed a difference, but

> I thought maybe it's one of those things that needs to accumulate in

> you system somewhat.

>

>

> My daughter an myself both take vitamin B-12 shots. We need them because

> we are anemic. My doctor said that you need only take a certain amount as

> if you have to much, i just washes away.

>

> A for helping, I really don't know. I will keep taking them just in case

> they do help. As far as I can tell, the only think that does much good is

> pain medication and medication to try and help me get some energy and get

> rid of some of this fatigue.

>

> I had a terriable time today. I don't know what casued it but my eyes were

> blurry and I had a terriable time trying to do simple things until I just

> gave up. I tried to write something and it took about 6 torn out pieces of

> paper to figure out that I was writeing like I was drunk. I finally typed

> it and that was fun. I couldn't spell. It was a good thing that I was

> copying something, At least they knew how to spell or at least I hope so.

> My typing is not so hot right now.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

I am so frustrated. I know you all have been where I'm at but I

ended up crying in my Rheumologists office yesterday. I am so

embarrased. This is the doctor I've been seeing for 5 years. My

diagnosis was never biopsy confirmed and she never has been

convinced it was sarcoid. About six months ago, I had burned my hand

and had no pain response so when I saw her, she felt it was ms. Sent

me to the neuro,did all the tests. Everything came back normal

except elevated ACE level in my spinal fluid. My toes are all numb,

my legs are now vibrating, I have alot of pain in my hands,feet,

hips. Uveitis in my eye, 6 yrs. I drop everything at least once, if

not more. I am having trouble walking, which I have attributed to

the numb toes but Im not sure. I am now taking so long to get ready

for work that if I don't get up alot earlier, I'm running late. I

burn dinner almost every night, unusual for me. I am fed up,

frustrated.

So, yesterday when I went back to see her after all these tests, I

told her that the neuro gut, who admitted to me he's never treated

anyone for neuro sarc, wants me to go to s Hopkins sarcoid

clinic. She agrees but then questioned any treatment for me. She

won;t put me on any sort of treatment other than pain management

because of the toxicity involved and the fact that any treatment

could mask real sypmtoms that need to be recognized. It makes sense.

I know it does. But, I'm at the point where I need to maybe cut back

on work and need someone other than myself to recognize that. My co-

workers all say, you're walking funny, stuff like that. They see it.

Why can't she?? Maybe I need to find a new rheumolotogist.. I don't

know. My husband thinks I'm nuts. Bonnie B

[Guest guest]

Bonnie,

Sorry to hear your frustration.... There is one truth to this matter your husband is right you are nuts, unfortuately it is the Neurosarcoidosis that is causing all of this. We have all been there and it is really frustrating because most of the people that look at you and me can not see or feel the pain that we are going through. I have all of the symptoms that you are going through. I was diagnosed With Sarcoid in Aug of 1996 and then with Neurosarcoidosis in 1997 even to this day some doctors say they don't know if I really have Neurosarcoidosis or not. I am figthing with my corporation right now for disability after giving them another nine years of 10+ hour days and finally calpsing in April 2005. Social Security awarded me disability straight up in October of 2005 on my first request. My company said that there was not enough evidence to prove that I have Neurosarcoidosis and

that even if I do have Neurosarcoidosis that it may not fit into their guidelines of disability. See you have to look disabled before people will believe that you are disabled. Unfortunately people can not in see you inside pain nor can the medical instruments reflect the pain either. Therefore, if there is no proof, you can not be having any pain. But once again your husband is write, he probably has given the best diagnosis. You are nuts as this disease will drive you nuts and make you think that you are crazy it is very difficult to discuss this with anyone as you are in a world of your own. I have had over 100 test performed. While working at my corporation my medical coverage was excellent praise God for that, unfortunately all of the results have been negative as the test equipment is not designed to show or diagnose what we have. There is no way to measure pain on a insturment therefore, it must be in our minds.

Oh well enough rambling I hope that Hopkins can provide you with some answers and medication to at least keep things under control. I have been on 20 mg or above of prednisone since August of 1996. My highest doses have been 125 mg intervinously. When I go down to 15 everything goes upside down. Any way I have had four spinal taps and everyone has shown my protein 2x the norm and as high as 6x, and my ACE levels are always abnormal. Those two measurements with out an actual biopsy are the best indications as to if you have Neurosarcoidosis. Also my white matter in my my brain is changing and increasing size, while this is not totally conclusive this too with all of the other test results that I have had are good indications of Neurosarcoidosis. At this point I have three doctors that all believe; one, that I should qualify for disability, two that I clearly have Neurosarcoidosis

and are willing to testify to this end. So as frustrating that this is and I am sorry for all of the run around you are going through you need to hang in there. And if you need to go to 50 doctors, keep changing until you find one who understands this strange and very dibilitating illness.

I have a lawyer and I will finished with my appeal in September 2006 and let everyone know how it goes. I am hoping to win and my lawyer feels that we have a very good chance. I will say for now when I win I will let all of you know what it took to go the distance to gain a favorable position. The company that I was forced to retire from is a Fortune 100 company, it is self insured for disability, and does not want to pay if they can avoid it. Unfortunately I am only 51 years old and they would be stuck with me as a burden for 14 more years until I reach 65 and would be put on regular Social Security. That is a lot of Pecos to spend and if they can avoid it they want to say good bye to me forever and September is my dead line for my appeal. If it goes beyond that we will go to litigation. If I can win this appeal it will set a president and others will be able to use my case as a blue print

for them and we will start to see other Neurosarcoidosis patients get funding disability they need to live as normaly as they can with out the stress of trying to figure out where the money to servive is going to come from.

Sincerely,

Bob Casper

Doctor's visit

I am so frustrated. I know you all have been where I'm at but I ended up crying in my Rheumologists office yesterday. I am so embarrased. This is the doctor I've been seeing for 5 years. My diagnosis was never biopsy confirmed and she never has been convinced it was sarcoid. About six months ago, I had burned my hand and had no pain response so when I saw her, she felt it was ms. Sent me to the neuro,did all the tests. Everything came back normal except elevated ACE level in my spinal fluid. My toes are all numb, my legs are now vibrating, I have alot of pain in my hands,feet, hips. Uveitis in my eye, 6 yrs. I drop everything at least once, if not more. I am having trouble walking, which I have attributed to the numb toes but Im not sure. I am now taking so long to get ready for work that if I don't get up alot earlier, I'm running late. I burn dinner almost every night, unusual for me. I am fed up, frustrated.

So, yesterday when I went back to see her after all these tests, I told her that the neuro gut, who admitted to me he's never treated anyone for neuro sarc, wants me to go to s Hopkins sarcoid clinic. She agrees but then questioned any treatment for me. She won;t put me on any sort of treatment other than pain management because of the toxicity involved and the fact that any treatment could mask real sypmtoms that need to be recognized. It makes sense. I know it does. But, I'm at the point where I need to maybe cut back on work and need someone other than myself to recognize that. My co-workers all say, you're walking funny, stuff like that. They see it. Why can't she?? Maybe I need to find a new rheumolotogist. . I don't know. My husband thinks I'm nuts. Bonnie B

[Guest guest]

Oh Bonnie, I am so sorry, yes I have been where you are at and there is nothing more frustrating. You know something is wrong, yet it is like everyone around you is walking around with blindfolds on. What drives you nuts is the fact that the symptoms are so obvious, and you are so sick and exhausted you don't know what to do. Please don't give up and push till they let you go to the sarcoid clinic. Your symptoms are screaming, if they really are a sarc clinic, they should be able to diagnose it. I will be praying you get the answer you need. I remember praying for God to just give me a name, the name of what was happening to me. Don't get me wrong, I did not want to be sick, but I knew that I was and I knew I needed an answer. I thank God for His faithfulness and for him putting a name to my tormentor. Once they get the name, then

they can justify treating it, and get aggressive with trying to curtail all it throws at us. If you look back at some of the previous emails I believe Tracie or Terri gave the name of a book about a man living with his chronically ill wife. I'm sorry I can't remember the name, this might help your husband understand what's going on a little better. It's not that he doesn't care, he just doesn't understand and he's probably afraid that if he admits something is wrong with you, that it will be. Alot of people feel like if they deny something is wrong with someone they love long enough that it will go away, they just can't bear the thought that something is seriously wrong. I also think husbands feel like they are failing us somehow because they have no way to protect us. When you can get to a point where it is possible, maybe you can talk to each other about all the fears and questions that are going

through your head and heart. I can deal with anything as long as I understand and know what is going on. I hope things turn around very soon for you, please take care......Connieswedishbee wrote: I am so frustrated. I know you all have been where I'm at but I ended up crying in my Rheumologists office yesterday. I am so embarrased. This is the doctor I've been seeing for 5 years. My diagnosis was never biopsy confirmed and she never has been

convinced it was sarcoid. About six months ago, I had burned my hand and had no pain response so when I saw her, she felt it was ms. Sent me to the neuro,did all the tests. Everything came back normal except elevated ACE level in my spinal fluid. My toes are all numb, my legs are now vibrating, I have alot of pain in my hands,feet, hips. Uveitis in my eye, 6 yrs. I drop everything at least once, if not more. I am having trouble walking, which I have attributed to the numb toes but Im not sure. I am now taking so long to get ready for work that if I don't get up alot earlier, I'm running late. I burn dinner almost every night, unusual for me. I am fed up, frustrated. So, yesterday when I went back to see her after all these tests, I told her that the neuro gut, who admitted to me he's never treated anyone for neuro sarc, wants me to go to s Hopkins sarcoid clinic. She agrees but then questioned any treatment

for me. She won;t put me on any sort of treatment other than pain management because of the toxicity involved and the fact that any treatment could mask real sypmtoms that need to be recognized. It makes sense. I know it does. But, I'm at the point where I need to maybe cut back on work and need someone other than myself to recognize that. My co-workers all say, you're walking funny, stuff like that. They see it. Why can't she?? Maybe I need to find a new rheumolotogist.. I don't know. My husband thinks I'm nuts. Bonnie B

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[Guest guest]

Connie,

Thanks for your reply. I am going to make my appointment with s Hopkins. I have a good friend who will drive me there, as it's 3 hours away. I actually waas sent there 5 years ago by the doctor who originally diagnosed me. I saw Dr. Moeller there, head of the sarc clinic. He said that without biopsy he stillfeels that it's multisystem sarc but because of my family history of autoimmune disorders, he also had some reservations. So, what will be different this time?? Probaby nothing. I will go anyway, as I have no other good alternative.

My husband is a moot point anymore. I have prayed over his total abandonment of me in this and have accepted that he is not capable of handling this. He also has done more, much more. I have to face the fact that he is out of the picture and the most support I will get from him from now on is alimony!! Ive been married for 28 yrs and deserve better!! Of course, it's kind of scary to consider being single again will all that's going on health wise. I know it sounds like I'm a cold hearted woman but the truth is I've had to grow a thick skin living with this person. It started in small ways, like walking 20 ft in front of me cause I walk slower. Then, he would park in the back of the parking lot, the furthest away from the movie theater that he could get. I would look across the lot and just say," I can't walk that far". He'd park and leave me to follow as best I could. You all know how that feels when someone doesn't accomodate you out of ignorance?? He knew I couldn't walk!! So yeah, small stuff like that. Then, he would take the family for outings and leave me home because I couldn't walk all over the city or where ever he planned to go. Now, I am not an ugly, mean-spirited, woman. I clean up well. None of my friends are embarassed to be seen with me.This was how I had been treated. No more. I will not be treated as less than just because I am sick.

I know many of you also have to deal with this subject. We all look pretty much the same on the outside. I believe there's even a peom on this subject.People assume because we look okay, we ARE okay. Inside, I feel like an 80 yr old woman some days. I still work, cook, clean (not as much,it's been 100 degrees here), garden, quilt, and some days, entertain when the mood strikes. It takes a heavy toll. I'm not ready to admit I can't do it all. Especially with my husband around. I smile and sing and pretend all's right in my little corner of the world. Thank you all for listening. May your days be pain free!!!

Bonnie B