old? I don't think so.

[Guest guest]

Marla, I'm really tired of hearing that too. I'm only 57, and that's not old! People my age and older are still teaching, practicing medicine, birthing babies, nursing, performing, composing music, doing research, and so on. Why haven't THEIR brains gone off into left field?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: NeuroSarcoidDate: Sat, 27 May 2006 14:29:04 -0600

Eileen,

There sure are a lot of nurses here. I have trouble with the short term memory, but whenever I say that to someone, they just laugh and say, well we are all getting older and it’s just age, they just don’t get it? I find myself just going blank sometimes, can’t remember what I was saying, and they tell me that’s age too, oh well, I really didn’t think I looked that old, guess I need to start using my own Kay with double doses. Lol

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Eileen MacSent: Friday, May 26, 2006 11:56 AMTo: Neurosarcoidosis Subject: RE: NeuroSarcoid

Marla,

Don't we make so many excuses about what is happening to us? I am a cord magnet my feet will get tangled in a cord if they have to go across the room to find it.

My sarcoid has remained in the peripheral nervous system. i have been so lucky, when I read the emails here some of the people have suffered tremendously.

My worst days are that my hands shakes so that I drop things, I can hardly write anymore, typing takes forever. I walk with a cane. My speech is affected sometimes. I fall occasionally. I have a problem wound on my foot,. and my memory is bad. all in all that ain't bad. I can still take care of myself.

I too worked in OB for six years, then I went into a telemetry unit and from ther into Intensive Care. Then I retired (for a month) then I went to a nursing home to work.

Thanks for talking to me.

Eileen

Marla Bramer wrote:

Eileen,

Never worry about rambling we all do it, it’s good for the soul. Wow you’ve had a long road. I too am an RN there are many nurses in this Sarcoid family here. I used to work Labor and delivery until I started going numb and losing my balance big time, at first I blamed it on tripping on all the cords hooked up to mom, as I would catch myself on the edge of the bed, otherwise I stayed close to the walls. But when I started to go blank when the doctor would ask for something, well that was bad news and had to quit, for the second time since I was dx with sarc. I have a lot of trouble like you said with spelling, and just mentally check out from time to time. I teach part time at a local community college, and it’s hard because the words sometimes just don’t come out, and I just stand there with a blank look on my face. As far as the pain goes, I have been blessed with a healing, that took away more then 80 % of my pain, and I regained allot of energy. I still deal with head pain and head issues. Thank you for sharing your story.

Blessings,

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Eileen MacSent: Friday, May 26, 2006 6:05 AMTo: Neurosarcoidosis Subject: RE: NeuroSarcoid

I go by Eileen. I have been a nurse for forty years. Live in the good old USA. Married, three children, six grandchildren. All live close by. My doctors are very good to me.

So I have a lot to be cheerful about.

I had numbness and tingling for several years before I went to see a doctor. I first thought I had Restless Leg Syndrome. So I walked a lot, and never slept. I took OTC meds. Finally I mentioned it to my doctor after my feet were totally numb almost to the knees and I was having pain.

They started the workups then. I have an HMO and they have an excellent clinic, so I saw the Neurologist there who thought I had Sarcoid but sent me to se a specialist in Chicago who said no and did a Spinal Tap and when the protein was very high he diagnosed me Chronic Inflammatory Demyelinating Polyradiculoneuropathy. They started out with some medication.

I also had several scans and a total MRI of my back. The MRI showed three cervical discs, two thoracic discs, and three lumbar discs were really messed up. (I had always told my students and co-workers that always used good body mechanics and if they followed my lead they would never have a back problem. So, then they gave me an injection into my cervical spine and wala! it helped with the pain. (that was back when the pain wasn't so bad). So eventually I had a Cervical Resection with a Fusion and lots of Hardware. Done in UIC by a team of specialists.

Came out fine, came home, did well, went back to work and worked for a few hours. (I was the Director of Nursing) and started to sign my name to something and could not spell my name. Well, hadn't tried to do that since surgery. I still have (5 years later) have great difficulty spelling.

Anyway the surgery didn't help. (Now I have a pain in the neck).

I went through all the newest meds, plasmapheresis, etc. All the workups for latent cancers. My mother and her brother died of lung cancer so the people at Northwestern are sure that I have a hidden Lung Cancer somewhere.

Then I was told that I had End Stage Diabetes by a Neurologist at UIC. I never had an abnormal fasting glucose. But I used to have hypoglycemia That was the only time I really got angry.

Finally after I got Sepsis from an infected central line when I was having plasmaphersis (At this point I was still working every day and having the procedure done three evenings a week taking vicodin like House on TV) The doctor would not let me go back to work. I agreed because something is affecting my memory. It is getting very bad, I am now on Namenda, if anyone else has that problem, it helps me.

They biopsied the Sural nerve and a the Gastrocnemus muscle in the back of my leg and they were both positive for sarcoid, so my doctor was right so many years ago.

I use a Duragesic patch for pain with vicodin for breakthrough and my pain is controlled quite well that. I am not pain free but it isn't bad. I was on Neurontin also, but was recently switched to Lyrica.

I do now have diabetes but not very bad, I attribute it to the prednisone. The wound is from the neuropathy.

So, I have been on disability for 1 1/2 years now.

I am sorry, you asked a simple question, ans I rambled.

Eileen

Rose wrote:

A big cheery welcome to you! Do you go by MacLeen? I hope that optimism is contagious, because I think you have a remarkable attitude. Do you mind giving us a little background on yourself? Married, kids, location? Are you diabetic, or are the ulcers the result of the sarc neuropathy? I'm interested, as I have severe peripheral neuropathy, getting worse. I'm probably diabetic too; will discuss lab results with my doctor next week.

This is a great place to ask questions, give & get support, share information, vent, rant, whatever you need. Sometimes we share feelings here that we don't feel free to share with our families & friends. Visit the Links section for some great & varied resources; also the Archives for past information. You can access them at the bottom of each message sent through the group. You can also check out the Photo section & see what some of the NS family look like, or even used to look like.

You may experience a lag in response time, as many of us are in varying stages of illness, recovering from treatment, etc. Again, welcome to the group. You seem to have much to offer us; don't hesitate to voice your opinion.

We don't always talk about rodents & hot tubs. But many of us find that some silliness relieves the anxiety & loneliness many experience. I hope that doesn't put you off. More later!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: NeuroSarcoidDate: Thu, 25 May 2006 06:07:50 -0000I am new to this site. I have had Neurosarcoidosis for several years. Can no longer work. Have now developed nodules in the pericardium. Overall, I think I have done well compared to some of you whose messages I have read. I have been on many meds and reacted to most of them so had to settle for old basic medications. I was on large doses of prednisone for years. I have had nonhealing neuropathic ulcers on my feet for the last 19 months now. I had my second surgery (Deep debridement with graft) on May 19th. So they have now decreased the prednisone. I am now non-weight bearing again. I had the first procedure done in January (the wound had been debrided in the office and treated at a wound clinic for 13 months. Since January I have had two bouts of Cellulitis in my leg, one requiring hospitalization. However aside from this I have done OK except I have difficulty walking,of course.It is good to know you are out there. God Bless Each Of You.macleen500~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database