Re: [SPAM] Sound familar?

[Guest guest]

Bonnie

OMG do I ever know what you are talking about. I have been diagnosed with NS. Sometimes I hurt so bad. My right side is mostly affected but so is my lower left. I can walk with a walker but only a few feet at a time. My equilibrium is so bad I cannot stand alone. The pain varies at all times. My feet are always like pins are being stuck in them. I am always tired and sleep it is driving my family crazy. I don't care I need it. I have had the biopsy in my leg and arm. No sign of sarc there. Again my fathers words come to mind---I cried because I had no shoes, then I met the man who had no feet. ----- God bless my dad. I pray for you and everyone inflicted with this crap. It isn't fair but neither is life. I hope you ALL have a wonderful painless holiday. When you feel like you want to end it all--this group has helped me. I hope I can do the same for someone someday.

God bless you sweetie and keep trying.

Thinking of you with a prayer in my heart.

Jackie

[sPAM] Sound familar?

Dr. Baughman told me 2 years ago he is sure that I haveneurosarcoidosis. I had a lot of trouble finding someone to do thebiopsy and then I lost my insurance.I have asthma and restrictive airway disease, but my chest x-rayswere always normal. I haven't had a chest x-ray for about 3 years. Ihad a electrophysiological study on my heart in July and had quite afew heart problems. I also have pulmonary hypertension. I am takingmeds for my heart and lungs. I also shake really bad when I firstget up in the morning and sometimes fall. My right hand has a tremorthat is getting worse. I have muscle spasms and Charlie horses in mylegs so I take Valium to help with those. I have gastroparesis andcannot digest very much food. I basically eat a restricted diet,easy to digest food. My eye sight is worse. I have troubleswallowing, get choked easily, and have a dry mouth. My memory isshot and I have to be really careful (put food on to cook andforget). My legs are really weak, hurt all the time, and are sore. Ihave lymph nodes that swell in my groin, underarms, and neck. I havenumbness in different parts of my body from my feet to the back of myneck, the spots vary. I am so tired that at times I sleep 12-14hours straight. Just cleaning my small apartment is a big job forme. I was in the hospital for 3 days in 2006 because my legs wereparalyzed. In 2006, I used a wheelchair and now use a walker and canewhen I need it.I am going the 13th to have the biopsy in my left upper thigh. Hetold me it will be about a 4 inch scar and he will go in pretty deepso I have to be put to sleep. After I get this done, if it showsanything, I will then see Dr. Baughman again.I am doing this mainly to get a diagnosis on paper. My cardiologistand rheumatologist-friend all think that I have NS.To be very truthful, (I know some of you know exactly what I mean),some days I feel like I am dying, other days I feel better.I agree with Dr. Baughman and the other doctors, I just want it onpaper to be able to prove what I have.Thanks for listening.Bonnie