New and grateful I found you

[1000faces]

I have no clue how to use a blog. How do I know if I hsve a response? I am 70 and diagnosed with connective tissues disease in January. Per doctor lupus, sjogerns and raynards. So, stay out of sun and cold, interesting. I know I'm fortunate compared to others but need some help. Other issues I deal with, constant 24/7 pulsing in my head to the bear of my heart so far 18 months of never a mimosa

ENT of silence. 6 years ago acute pancreatitis hospitalized. I think that might have been the beginning go my new issues. Cannot take planquinl due to a frekle in right retina................ Has Antony experienced the pulsing in the head trying to figured out if it's associated with CTD.

Thank you all for writing. It's theraoy to read. I wish everyone a good day.

[Purpletop]

Firstly, welcome to the forum. You will see that when someone responds to your post, you will receive an email saying so.

Now, for the symptoms - I'm sorry not to be able to help with the pulsating head question. But with lupus anything is possible. The good news are that once lupus gets under control, the majority of symptoms will either go away or improve. What does your doctor say about the pulsating?

You mention that you can't take Plaquenil - has your doctor suggested Mepacrine as a substitute? What about any immunosuppressants, such as CellCept or Azathioprine?

You've already had a rough time - the acute pancreatitis is no joke, let alone everything else. Let's hope you get to the right medication soon.

[1000faces in reply to Purpletop]

Thank you. Most of the meds have an affect on the eyes. IF the frekle changes there is a strong probability the eye would have to be removed. Learning to cope is a better option. As of today none f the doctors are saying the pulsing is due to lupus HOWEVER they dint say it isn't. "Could be". I have no doubt we have all heard that, numerous times. Waiting for results from cardiac testing Monday, hopefully will get some answers. Thank you for you input. Much appreciated.

[Purpletop in reply to 1000faces]

Have you had brain MRI? Have they checked for vasculitis? not that I want to add to your long list, just thinking. Mepacrine doesn't have the same effect on eyes as Plaquenil, nor does the mycophenolate but as you said, loosing an eye is not something one can take a risk on.

It must be really worrying, that pulsating.

[1000faces]

MRI. CAT Scan. With and without contrast negative. Temporal biopsy both sides inconclusive. You should see what thst looks like - they shave the side and after many years saw my natural hair color. That was good for a laugh. Will make notes regarding the meds you mentioned snd discuss with doctors next month. Thanks

[Purpletop in reply to 1000faces]

Was that painful, the temporal biopsy? Few months ago I had such a very bad headache on my left temple/side of head that I thought I had temporal arteritis and the neurologist mentioned the biopsy, mainly because I'm apparently too young to have TA (I'm 48). In the end the headache subsided and the neurologist gave up on the idea. I wasn't keen either - it sounds dreadful!

Good luck with the investigations - I know how it is to have one symptom that can't be explained and doctors are just happy that the 99 other symptoms are resolved and don't care about the last one :).

[1000faces in reply to Purpletop]

I love when doctors say you are to young I get to old or "you don't look like you have lupus". Or. You look so good for age regarding my head "you'll learn to live with it". Anger isn't a strong enough word. The biopsy was not painful you have a light sedation irs less than 30'minutes. Really easy, they'll do both sides to have something to compare. Do not do in office setting, you want a hospural setting as there is light sedation involved. The worse part for me was having both sides shaved .... The hair is growing back, needless to say my natural color. :). Be sure to keep me posted if you have it done. All things considered. We gave to be grateful for what we ARE NOT going through. I know it sounds good but gets hard. So glad I found you.

[1000faces in reply to Purpletop]

Did you have the biopsies? How are you doing?

[LupusAdmin3 LUPUS UK]

Hi 1000faces,

Welcome to HealthUnlocked, i hope that you're settling in well.

If you would like i can send you one of our free general information packs on lupus and the symptoms. I can also include our factsheet on 'Lupus and Mixed Connective Tissue Disease' which will help explain more about the condition. Just send me a private message or an email with your address and i will pop one in the post for you. My email address is - [e-mail]

I hope you find the forum useful and if you need anything at all please do let me know.

Best wishes,

Hayley

LUPUS UK

[mirabel]

Hi I have mixed connective tissue disease and it has affected my eyesight - I have lost over half of my vision. Initially when the inflammatory indicators in my blood were high I experienced pulsating sore areas on my head. They are still sore and hurt at times but don't pulse any more. I had all sorts of test including MRI scan of brain and temporal artery biopsy. Nothing really showed in the tests apart from

raised ANA in my blood. Unfortunately everyone is different. I do find I need to keep my sugar/carbohydrate intake down because if I don't, I feel unwell and this can affect my head.

Hope this helps - good luck with your doctors.

[1000faces]

Thank you. So far I haven't been able to tie the pulsing into anything. My head does get sore at times can't even comb it. I guess Scarlett from Gone With The Wind is right "tomorrow is another day". Be well and stay positive.