Re: My husband has sarc and he has an appointment on Monday with a Neurologist

[Guest guest]

Jodi:

First, hang in there. I played football and ran track in college too. Once the flare is under control...to me pain similar to post two-a-days practice. My appointments usually involve CT and MRI (long time) blood work, balance tests, nerve test. My diet has changed immensely...mainly vegetables and anti-inflammatory herbs/spices. It has helped a great deal. When he is ready for rehab...try seated yoga and walking in a pool. After about 2yrs, I finally feel a little like the old me. This group is great and very helpful.

I haven't been on here in a while...but I'll try to check

Subject: My husband has sarc and he has an appointment on Monday with a NeurologistTo: Neurosarcoidosis Date: Wednesday, January 12, 2011, 10:34 AM

Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to

about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo

[Guest guest]

Hi I read your post and welcome to the group. I am sorry that you have to endure this illness. I too like you am the care giver. My wife suffers with the disease, but she suffers with hers in the brain which causes a host of other complications. When meeting the doctors be proactive. Ask them what medicines they expect to use to assist in helping to combat the disease. What can be done to keep the illness at bay for as long as you can? Ask if diet might help? I am also sure that others in the group here will have many more answers than I. The people in this group are a wealth of knowledge and caring. They have helped me in more ways than I can possibly count. I know this is rough. I also

know how you feel as a caregiver. There are times I feel completely helpless. This is when I rely on the group here for support and my faith. You said that he was denied SS twice. I would after seeing these doctors illicit their help in getting paperwork in order to refile. If he can no longer work then he should be entitled. We had to file for several years back. If that doesn't work then is he entitled to take early retirement benefits because of the illness? I teach in New Jersey and presently if someone is unable to continue working they can file for early retirement benefits because of the illness. Consult the benefits people for the county, district in which he worked. Keep those communication lines open with him. From your post you have been together a long time. It will help for both of you to understand how each of you is feeling. I know you are

scared. I have been there as I am sure others in this group are. Seek the help of family if they are able to help. Help may be as simple as them willing to listen to you when things get rough. Take time for you as well. This illness takes its toll on everyone. Take time to still do things when you can. Enjoy the time you have together. I hope this helps. Take care, & I will add you to my prayers.MattSubject: My husband has sarc and he has an appointment on Monday with a NeurologistTo: Neurosarcoidosis Date: Wednesday, January 12, 2011, 11:34 AM

Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to

talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.

I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo

[Guest guest]

Bill, thanks for the response. It's always great for someone with that kind of perspective & experience to reply; you can provide much more knowledge than my guesswork!

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!)

To: Neurosarcoidosis From: dmhs1666@...Date: Thu, 13 Jan 2011 11:15:58 -0800Subject: Re: My husband has sarc and he has an appointment on Monday with a Neurologist

Jodi:

First, hang in there. I played football and ran track in college too. Once the flare is under control...to me pain similar to post two-a-days practice. My appointments usually involve CT and MRI (long time) blood work, balance tests, nerve test. My diet has changed immensely...mainly vegetables and anti-inflammatory herbs/spices. It has helped a great deal. When he is ready for rehab...try seated yoga and walking in a pool. After about 2yrs, I finally feel a little like the old me. This group is great and very helpful.

I haven't been on here in a while...but I'll try to check

Subject: My husband has sarc and he has an appointment on Monday with a NeurologistTo: Neurosarcoidosis Date: Wednesday, January 12, 2011, 10:34 AM

Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo

[Guest guest]

Jo, I'm so sorry your husband is ill, but glad that you were able to find us. In the 10 years since his diagnosis, what's been going on as far as treatment, follow-up, doctors he's seen. Is this neurologist a new doctor? Give us some info & we can suggest some strategies for his doctor visit. Re: SS disability; how long ago was he denied? Even 2 denials is not a final judgment. What state do you live in? We have a SSD expert in the group. Connie has been feeling pretty crappy (my choice of words), but hopefully she can give you some ideas. If the final appeals date has passed, you'll have to start the process again, and I believe that you'll lose any back pay from the first appication, but you still want to press on. Let's see if Connie has a plan. As far as the diet, I believe that recent research does support the anti-inflammatory diet. Recently we've had some members describe the benefits they've experienced from trying to eliminate or decrease food additives, including hormones & antibiotics fed to cattle, etc. I think this is an exciting area that will get more attention in the near future (probably not from many of our docs, who get very little training in nutrition & don't seem inclined to learn about it once they are out in practice; there are some exceptions, of course).

I'm sending some links to caregiver resources in a separate post, due to the length.

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!)

> To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:34:24 +0000> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >