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I have Cerebral Vasculitis, diagnosed in July this year, was getting on ok ish....my poor dog died at the vets yesterday, he was only 6 years old so unexpected, and this has really upset me,not only with the loss but my symptoms, staggering, falling again can hardly walk and really dizzy, i know i would be upset but this is feels i am going backwards, i hope it gets better. also have started on Citalopram i hope this works.
Cancer Imuran Dry mouth Citalopram Sertraline Vasculitis Anxiety Stress Diabetes Constipation Pain Memory Valium Depression Celexa Dieting
I can relate to how you feel. Two weeks ago we had to put down my dog that we had for 11 years. She was full of cancer & it had gone to her lungs. It feels very strange around here without her. She was a chihuahua. She was such a good dog. In May I was diagnosed with Stiff Person Syndrome after 4 years of looking for a diagnosis. I lost my medical insurance in January of this year because it became a choice of $1500. a month for insurance or the house note. I have very blessed to get medical treatment free through a community of volunteer doctors recommended to me by my family doctor. They immediately sent me to a neurologist free & he knew before the test even came back with the actual diagnosis. I thought all hope was gone. I knew 3 years ago that it was neurological because my muscles were contracting for no reason & I could not stop them no matter what I did. Everyone knows what a charlie horse feels like in your leg, imagine one on the whole trunk of your body & down the back of a leg. The only think that will stop it is valium. I had the hardest time to get valium until the diagnosis. I also had 30 injections of steroids in the lower spine & they did absolutely no good at all but gained 54 lbs. in 4 months. I have never been this weight in my life. I look 8 months pregnant & I'm 53 years old. I have no clothes & really feel uncomfortable sitting up too long. They told me the weight would not go off as fast as it came on. The steroids are known to do that & dieting will not affect it. It just has to get out of your system. Meanwhile I am in hiding pretty much. I hang around in my biggest pj's & occasionally go to church when I can sit long enough. If not for my faith I do not know how I would sustain any of this mess. God has definitely been my refuge. I hope this encourages you in some small way. My biggest desire out of this whole mess is to do one thing & that is to inspire others suffering with any type of physical problem that is chronic and totally changes your whole lifestyle. Mine has been like a train wreck for four years. I have my mother, husband & two adult children living at home. My kids go to college full time but the stress it has put on them has been quite tremendous. I see it in their eyes when I suffer. It is hard to watch for them. Needless to say, being the one who is doing the suffering! My son was addicted to speed & became a born again christian and dropped the speed in one day after 2 years. He had no withdrawal which was a miracle & he has been a balm of Gillead for me. He has a gift of compassion that has amazed me. When I get so bad that I have to go to the ER, he has sat and read the Bible to me. Now he is in charge of feeding the homeless downtown Atlanta every Friday night for his church & leads Bible Study Wed. nites for young adults. He has been sober for two years. He got me back into church before I was diagnosed & the timing could not have been better. That is the way God works. Hang in there and try to take one day at a time and know who holds the future. I will pray for you.
Diane Spencer
Hello Diane, thank you so much for your reply, it is so sad to loose someone you love i think it was the shock too, my other dog is older he is 12 is ok so i thought it would be him, they only had their teeth done. you have had a bad time of it, everytime i speak to someone in America they are having trouble with their insurance and getting the right person to see or selling their houses to downsize to pay for their treatment, it is such a worry, thank god we have the National Health Service, i am afraid that being a newly diagnosed CV having 3 strokes and now off from my job which i love i am still very angry about it all all not being very mobile gets on my nerves and i cant even start on the steriod and weight problems and this all happened when i collapsed end of july, so it is still all new to me and now i have taken steps backwards with my recovery feel low, my family are great and they are a massive help but i do feel that they must get fed up with it all, but they say no, so not really at the stage of believing anything at the moment, but i listen and it is comforting to know that one day i will there.
take care and keep well hope to hear from you soon
Annie X
Annie, I am so sorry to hear about your dog. That's all you need at this stage of your disease. Maybe the increase in the severity of your symptoms will be temporary, and you'll be able to get your remision back on track.
Diane, I am so with you on the steroid weight gain. Sometimes I feel as though my body has been taken over by aliens. I have cnsv, like Annie, and am not in remission.
I'm glad that you found the resources to help with medical treatment etc, and it sounds like having your family around, although stressful at times, has been a blessing too. Watching someone you love change their life for the better can be comforting.
Those symptoms sound rather worrying Annie. They could be related to a reaction to what's happened to you (poor you: I've lost two cats in similar circumstances), but they are quite like what happened when my cerebral vasculitis relapsed hugely in May 2004, shooting up from being fairly stable to suddenly near-ceiling levels of inflammation in my blood. Rest over the weekend, but if you're still bad early next week I'd suggest seeing your GP urgently.
Good luck with the Citalporam. I started on that nearly a year ago for anxiety problems. It helped with those, but I got very bad constipation, so had to stop it. I changed to Sertraline which has worked very well for me.
HI snuffle and Yocken, I hope you are doing ok today and all is well, its been a bad week for me and still shocked with it all, thanks for your comfort, its great to hear from you, i do feel a bit better today and went out with hubbie and some friends for a chinese and had a laugh but i am shattered and wish i could sleep, still feeling wobbly and i have been taking it easy, but i am to see the doctor next week as my diabetes is playing up now, and she is changing around my medication,,,,its just non stop here, but i will go if i feel any worse, i sit here and get panicked that i am going to go dizzy as that is how it started last time, and when i feel like this im glad i start the antidepressants, will see how they go
talk soon thanks
Annie X
Hi Annie,Snuffle and Yocken.Hope ypu are all well.Its been a good few days only a slight headache but thats usual.Wrote a letter to my specialist airing my concerns of some of the new symptons that seem to be happening and see what might happen in he near future.Dont have to see him until Jan 2010.Just seems now they know what I have am just another number.Wouldn't be so bad but he is a 6hr drive.He says try to live and work as normal...whats that.pretty hard when you need a nap during the day.can't ask the boss for one.Don't think he would like it me throwing up or having to go to the loo every hour or so with the castric.I work as a nanny in peoples homes and am there on my own with the kids.I miss my job,love the kids.Insurance is different here in Australia.We can get some help from the government just covers the meds but not much else,but better than nothing.Just lucky to have support from family.Its hard for them to understand exactly how I feel but they try.Catch you all later.
Hi all,
sorry to hear about your loss Annie, no doubt the cause of worse symptoms. Seems stress is a trigger for all these terrible diseases. I have been on Citalopram for many years. My only real problem with it is a dry mouth and a really low libido....well right now its non existant anyway. Poor hubby!!! I still seem to have high anxiety problems. I still wonder if my problems will be called anxiety or panic.....but I still have spots on my MRI... sigh. Today at work was a nightmare. I work at a hospital and we had staff call in sick and all of a sudden we had all this extra work ordered from the ER. It was a nightmare day, I felt awful, anytime I got my BP going up, my headaches got worse, the dizzy spells nearly got me passing out with the patients. Glad today is over.
Tomorrow I am playing ping pong...Dr ping pong. The rheumie was no bloody good, so we are trying the ENT before going back to a neuro, due to a nasal obstruction and ear pressure, maybe he has a clue!!!
I have got to stop self diagnosing, but I know if I don't keep pushing I am going to keep being miserable and that will not do my family any good. I did however did something positive for myself and went to yoga.... wonderful and hope to do it again. was a bit wobbly but learnt some techniques to deal with it.
Hope you all have a better week, that there is a pot of gold at the end of your rainbow!
Kiwi
Hi Marge and Kiwi, thanks for your kind words and support over my poor dog, it has been a difficult week and i am getting better and my symtoms are getting better so i think it was the distress of it all.
well what can I say when i read what you put, the doctor saying, live and work as normal, this person has no idea what it is like to have this i also can not manage a whole day without sleeping and the rest of it its not just the physical problems and my rubbish speaking and memory at times its the pure exhustion feeling so weak i just have to lay down, last time i had it for 2 days and i could hardly walk, these things need to be taken into account cos they effect your whole life and everyone around you, its wonderful to have my family and friends and they are great but i do feel a burden and even though they say no you still do .... its only natural i think.
I too have high anxiety problems that although i was in a stressful job is very different over very silly little things now, and i need to relax which is getting there, it must be horrid to not have a diagnoses and wondering whats wrong, but keep going some people i have spoken to take ages and the doctors need to eliminate every thing.
only 3 more days and i will be seeing the consultant and start reducing the steriods, i just hope that once this starts i will start getting better and would love to be able to get back to work, but not yet, still not able to walk that far ane the excersise does not seem to be helping, i think its my brain not my muscles that is the problem.
I will be interested to know what your doctor comes back with from your letter, and i understand about the gastic problems too, not nice.
all have a great week and i will no doubt update you when i have seen the doctor, good or bad.
take care
Annie X
I am so sorry for your loss! I read somewhere that most people would rather be stuck on a deserted island with a dear pet than their spouse/partner! (Although I love my husband and children dearly, there is something about my dogs that brings me instant calm!) It will take time to rebound from losing your friend, so keep that in mind as you experience this stress (and grieving is just what we who love our pets do...).
I am on Citalopram (celexa) and have been very happy with the results.
Blessings,
Roja
Getting diagnosed with a disease that has not cure & is progressive is a loss. Anger is a perfectly normal feeling. It is like going through the stages of grief. You go through denial, anger, grief, shock, depression & finally acceptance. You will through each stage back & forth. I takes time. I have been through all of them week to week. God has really helped with the anger because I was hostile to the Medical Profession. The more hostile I became, the less help I would receive. I have been accused of just wanting pain pill, etc. I would get in their face. Now I look at them & think to myself "you are just a man". Not the "God" you think. That has helped me tremendously. Now doors have been opened and they are compassionate & I am amazed at the turn around how they now treat me. This has been a 4 &1/2 years of torture with no medical person listening. You feel like a tennis ball, back & forth with no answers. Then when I got the answer, I was elated, but reality began to sink in. So I too struggle with each emotion I described above. Since I can't work, and we know the battle is only inside of ourselves, it becomes a very lonely road. Even with Jesus helping get through that road, no person, loved one, etc. can really understand until you are in that struggle yourself. Write me anytime, I can do one thing, to inspire & help people like me get through these horrible diseases. My prayers are with you & I am here for you! Diane
Hi to all.Well one good week and then this week well.2 1/2 days of headache and vomiting again.I wish I could find something to get rid of the pain.Can't take my normal meds when I am like this cant keep even ice down.Cuppa tea was the best this morning,as least this is staying down.Hope everyone is well.Thinking of you Annie.It's great to be able to the steriods down,it did make a big difference.Just a catch up to all.Just resting and trying to pick up again.
Marg
Hi all, thanks for your replies, one week today that i lost my poor boy, my other dog is not feeling to well either very clinging at the moment, im sure he will get better, i am feeling better and seeing consultant tomorrow and i am very nervous about it i know he will say 'could be, may be' they dont really know i am just hoping that the symptoms are mostly due to the steriod, but i have a sneeky suspision that they are not, that makes me nervous too.. we will see.
Marge i do hope you feel better it worried me what is happening i was so hoping that you were over this and on the mend, class it as a hiccup do you think that you are on the right amount of steriods for a maintance dose, did you have any more scans when you went to see the consultant the first time, i know these are lots of questions but as we have the same diagnoses we may have the same healing too.
take care
Annie X
Hi Annie,re tests,When I went back in Feb one month after being diagnosed had another angiogram and lots of bloods.There was mark improvement so they said compared to the one in Jan.Had at this stage 2 lots of cyclophosamide and was on 60mg of prednisole continued the cyclo for another 4 treatments and decreased the steriods till was on 20mg in July and then decreased by 2.5mg per fortnight until 5mg.Went on to imuran in July dosage 150mg per day was alleric so went down to 100mg.Also was on sandomigran 6 tablets per day but they re not working so decreasing them over six wks (took six wks to get on them and six wks to get off them)Now on Poxepin 75mg per day another thing gradually to take(3 wks to get full dose.)My bloods seem to be in normal range have had at times the esr was high 16 and 22 but then the nxt time around 9.so cant tell.Having blood pressure problems has been 147/97.so am going to the local doctor today to see what can be done.Have since this last lots headaches have a heartbeat in my head all the time,is hard to sleep with it going madly in there.Its worse than the partner snoring at least I can give him a jab in the ribs and turns over.Wish this was a easy.Will be thinking of you when you go to the drs.I think you are a day behind us in Aus.Its 9am. Friday 16th.Keep well,just ask lots of questions and see if you can get what you need answered.Just sometimes they dont have the answers we are after,found that from experience.Keep your chin up
Marg
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