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My husband has been having high blood pressure. The doctor called and said his cholesterol is up and also his calcium is up that he wants to see him monday morning. Has anyone experienced this?
My husband has been having high blood pressure. The doctor called and said his cholesterol is up and also his calcium is up that he wants to see him monday morning. Has anyone experienced this?
If he is on some meds, they could explain the hypertension. The high calcium is common with Sarco, and he needs to look at watching his time in the sun. Sun exposure is bad for many people with sarco, and can make them sick. The doc may want to check his level of ACE (angiotension converting enzyme.) High levels of this are also common with Sarco, and it causes your blood pressure to climb. There are ACE inhibiting drugs that will help with this, and lower his blood pressure.
Missymom,
How did the results of the spinal tap come out? I went last Tues. (11-18) and had the lumbar punture myself. Was told I could work on Wed. which I did and have been flat on my back for the last few days. Seems to be the only way to relieve the head and neck ache. The doctor that did the procedure said I'm the first one in six months to have this reaction. Said if it does not get better they can do a procedure to make it better. I trying to lay and drink alot of flluids and hope it gets better on its own. I am very eager to get the results. I have started 20 mg. pred. and 200mg of hydroxychloroquine today. The neurologist I saw at utsw had already started me on 300 mg of gabapentin with gradual increase each week. I am up to 1200 mg per day now and also over the counter natural acteyl-L-carentine 1500 mg to help with brain fog and fatigue. Please let me know what ya'll have found out.
unique64
unique64,
sorry I havent posted about that. The doctor said everything came out ok. She wants to run more test, and was trying to get Shanes pulmonologist down here to run the test. But the pulmonologist said, why run more test we already know he has neurosarcoidosis, lets just treat it. This is the same guy that doesnt want to do another xray until a year from now, even though Shane complains about his chest and having trouble breathing. Not to happy with his pulmonolgist right now. And the lady in Dallas is good, but Shane was just fired ( under doctors orders not to work, drive or be alone) the other day and we cant afford to go back up there. Which sucks but she is trying to work with the doctors down here and get them to run all the test here.
His family doctor is the one keeping a close eye on him. Shouldnt it be the other way around?? I guess we will find out something come monday, he has to go back and see his family doctor ( the one that found out that he had high cholesterol, high blood pressure and high calcium).
GOD BLESS!!!
Hi Missymom,
Sorry about Shane's conditions and dr's orders. this has to be more then difficult right now for all of you. Glad the tap came out fine. I have read over and over that with some people x-rays do not work that they have to have a ct scan, i forget if they used dye or not. I've had people yelling at me cause you are not suppose to have dye more than 2x a yr and I am going on 8 (or more) tues for another test.
I have to try to get my gastro to talk to my immunologist who dx'd me, in 2 different towns. and my pcp is so lost and going to be worse since she went home, out of the country, for 2 months and I am so much sicker.
Why can't drs just get along? they tell me that they don't have time to call each other.
I do like the idea Pris posted today. I would love to be able to email my pcp or any other dr I found appriopriate to send them my symptoms before I went for the visit.
I hope Shane's breathing gets better. I know too much about chest pain.
Best of luck to all of ya
Missymom,
Did the neurologist give you the information to get Shane set up with MyChart on line. It is great for communications with her and it gets response within 48 hours. I have had such wonderful care at UTSW and infact the last two mornings the doctor and intern have called to check on me. I am not use to this kind of good treatment. Dr. Fitzgerald is the pulmonary doctor that is in charge of my case and started me on the meds for sarc. They may change this when the spinal tap comes back. Dr. Castro said that in 30% of all spinals that neurosarcoidosis will not show up. I'm sorry that Shane fell in this catagory after going through the experience. I am so fearful this will be the case for me.. The next step is to take tissue biopsy. The reason as I understand it, is to treat more aggressive if it is neurological. And if not the treatment can be longer term and less agressive. Anyway if you have not set up online ask his doctor about this. That way if you have any concerns or questions, need med. or just want to know answers, you can log on to mychart and be in touch. I/m not so sure I wouldn't be seeing an attorney about him being fired from his job. Something to check into. Good luck and let me hear from ya'll.
unique64
Will be praying.......I was "let go" from my job as well last Monday......will be seeing a new pulmonogist tomorrow and will update everyone on his insight. My last pulmonogist did a medianscopy, threw some prednisone at me and said "Get your eyes checked, you will be over this in six weeks".........not the case at all..........we just have to remain so proactive with this....I'm a nurse which works for me and works against me (my own mind, pretty much) but if I wouldn't have researched on my own when the symptoms weren't going away....who knows what could have happened....and then I found this website which I feel blessed.......it's a very safe place when I'm not really feeling that safe in this world........Hope the treatment goes well and will be take care, Dawn
Another thing, and I'm going to talk to the doc about this......but with the prednsione.....doesn't it kind of get to the point with all the side effects that you can't tell if it's the massive doses of prednisone or something new with the sarcoid. That just blows my mind! Praying for new treatments, definately!!!!!!
unique64,
We are set up through my chart. I have communicated to the doctor about his condition. She had talked to the pulmonlogist and was going to get him to run the test but he said why, we already know what he has lets treat it. Keeping my head up. I had to go to the doctor today, was scared I had strep, but turns out just an upper respitory infection. Still bad for Shane but better than strep. Anyways God bless!!
Missymom,
You just hang in there and take care of yourself. Shane probably needs to either see a therapist or take med. for depression. I did not believe I needed either for myself and was very opposed to it. Thought that was for people with real issues. I finally realized that not only did I need help dealing with my illness but so did my husband. We have found a therapist through my best friend (who is a therapist). I have found there are fears and issues I was keeping from my husband because I didn't want him to worry. And he also has fears that he couldn't talk about with me. I am also taking 10mg of celexa which has helped me cope with everything that is going on. I was not depressed as in I wanted to die, I was just so frustrated because I knew something was going on and nobody was listening to me. I wanted someone to help me find the answers when I needed to find the answers myself. The celexa helps me to be able to do this for myself. Good luck and keep me informed.
God bless,
unique64
Shane takes that medicine already. He was on it way before his diagnosis. Thank for the suggestions, I appreciate all that have helped in time of crisis.
God bless you!!
Hi Missymom,
My husband has high calcium levels and blood pressure he sees a pulm doc and a kidney doctor for the most part he does see other doctors but those are the 2 that take care of him the most. When his levels were high 2 years ago we found out that he was in kidney failure and didn't even know it except for fevers and weight loss that he tried to hide from me so i wouldn't get upset. Now we go to the doctors together so i know what is going on and besides i have done so much research on this disease i need to go with him so i can ask questions. If you do not care for his doctor find another or do what i did go in there ready to fight and have questions answered. Do not be afraid to be a little pushy my husband would go to the pulm doc by himself and when i would get home from work i would ask him so what did the doctor do for you today and he would say nothing thats when i got mad and starting going with him. I would research things i wanted to ask him and go in there fighting for him his doc is so much better now because of that sometimes they need a push.
I wish you nothing but Good Luck and i hope you get some answers. Keep me posted!!
God Bless
Connie
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