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recently diagnosed - looking for advice/help/support

louanne
0 Recommendations

Hi, I'm recently diagosed with cerebral vasculitis after suffering a couple of TIA's and other neurological issues. Initially started on steriods and immuno suppressants which seemed to work for a couple of months but I have started with symptons again so am currently on chemo treatment. Would like to know if anyone else has gone through this as it doesn't seem to be making me any better but the chemo treatment makes you feel ill.

Would like to try and get some idea of how things are going to progress.

I am 39 and also have type 1 diabetes, high blood pressure (one of those lucky people in life).

Thanks

Explore topics in this discussion:

Prednisolone Prednisone Dementia Diabetes Cyclophosphamide Vasculitis Kidney stones

7 replies

Margaussie

Hi and welcome.Not a great way to meet but is a great lot of people and you only need to ask and someone will give you information and hopefully gives you more info on CV.I was diagnosed in Jan 09.Started on chemo and 60mg prednislone.Took six months to finish the chemo and reduce the steriods,down to 5mg a day.Am still on chemo but in tablet form for another six months.The iv chemo made me sick ask the nurse or who gives you the dose to give some for nausea.Mine was bad had about 5 days vomiting.They gave me supposorties to do at home.The worked really well.Just rest and keep the fluids up.Dont know if you have the diararia,seems to be from the steriods.Found if you eat simple and plain meals wasnt as bad.I know with the steriods you are HUNGRY HUNGRY.HUNGRY.Then you eat so much had heartburn.Now the steriods have come down its eased.Its just a matter of time.So many new things and so many questions.If I can help just email me.
Will be thinking of you.
Keep strong and rest.
Marg

louanne

Hi Marg

Thank you for your reply. I know what you mean about the hunger and heart burn. One minute I'm starving next mintue not hungry cos by stomach hurts too much.

So far this site has helped me a lot as its nice to know i'm not on my own. I know its not the best way to meet new people but hopefully we can all help and support each other.

Speak soon.

Thanks

Louise

lordbacardi

I am so sorry to hear of your condition. My wife is 49 and had a seizure in March, she has had a brain biopsy but it failed to confirm she had vasculitis. The doctors have treated her for the disease with Cyclophosphamide and Prednisolone. She hasnt improved at all and is now suffering from serious dementia. I think she may have some other vascular disease but it is very hard to diagnose correctly. On a more positive note for you, her neurologist says he has seen the disease controlled by the chemo and steroid medication so hopefully it will continue to work for you. Best wishes and keep positive.

louanne

Hi,

Thank you for your reply and your wishes. Sorry to hear that your wife hasn't improved with treatment. I hope that she does start to improve and that things get better for you both.

Thanks again for your thoughts, take care.

2plus1not3

Can't talk much about CV as I do not have it but have been on Predisnone many times For the heart burn takes TUMS with Calcium or PURE MILK. The heart burn you are feeling is the steriods binding to the calcium in your system. The milk will get rid of it in seconds.

I an the victim of kidney stones and partial failure and with each flare up I get more and more nauseau. Zofram (available by prescription only) works immensely. You want to be careful of the normal treatments like crackers as the salt and the prednisone do not agree. Emerol is a liguid that is available OTC that can also work well for nausea. It is specifically designed just for that, though the taste leaves something to desire --- hey I have had worse.

One last tip as you are newly diagnosed - everyone on the board has gone through this phase regardless of ther Dx, Here's some tips:

1) Your disease may be "rare" but you Are normal.
2) It is OK to doubt the diagnose, wonder why, and to get mad about it. When you get mad - go someone and scream - works wonders! Even if you have to get in the car, blast the radio and scream ---- GO FOR IT.
3) It is OK to cry - besides then you are releasing salt from your system which goes back to what I said about the pred. (just don't let yourself get dehydrated.)
4) If you do get dehydrated and you are nauseas it will be hard to drink. Three foods will help as they are "solid liquid": Watermelon. Cucumbers, and Lettuce.
5) Talk to God, Question God, Get Mad at God for doing this to you - it is OK, God understands and will be there with you when noone else is.
6) Talk to us - we can help! If your "normal" friends seem distant it is becuase they do not know what to do and they retreat out of guilt but we are always here for you.

Good luck!!!

louanne

Hi

Thank you for your reply. Your points are really helpful and you have summed up some of the feelings "why me and that nagging doubt of are they sure! etc.,"
I know this isn't the best place in the world to meet people a bit of a double edges sword, sadness that people are going through so much but a relief to chat to others who understand the frustrations and worries.

Things like this cause lots of different emotions and thoughts.

I hope you are ok and take care.

Tinman

Well said 2plus1not3, exactly why I love this site, all the bits of wisdom that helps things become clearer, spirits stronger and the feeling of no longer being alone in the dark.
So much good comes from here in many ways for many people.

Tinman

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