Very high dose

[Hali12]

So here is what is happening now. I’m still here in the hospital. Told them I’m not leaving until we find an answer. So the neurologist came. She had me on 1000mg of IV prednisone which just finished. I’m going for an MRI. And possibly a spinal tap. Not sure about that. My first MRI I had was on May 17th was questionable. So doing another one to compare with that. So far that’s all I have for now. As for where I live I live in 🇺🇸 Albany, New York.

[Hidden]

Good for you! Stand your ground. Good luck!

How are you feeling????

[SnazzyD]

Well, it’s a decent dose of Pred 100mg?), so I hope if it is GCA you should get some relief from that and any adrenal crisis or withdrawal. You might feel a bit wired and sleepless tonight. What is their opinion of GCA or not?

Good luck!

[Hali12 in reply to SnazzyD]

They said it was 1gram of prednisone. They are not convinced that’s its GCA. Leaning towards MS

[SnazzyD in reply to Hali12]

Why MS?

[Hali12 in reply to SnazzyD]

I really don’t know I have told them everything I have told u guys. So I don’t know

[Lucylooloo in reply to Hali12]

Get them to do a pet scan only thing that showed up GCA for me after three (3) weeks in hospital even though my CRP s were near 300 😒

[SnazzyD in reply to Lucylooloo]

Good idea but it’s quite possible that it would be negative after high doses of Pred.

[Hidden in reply to Hali12]

Hi Huma

Glad you are at least getting some action. Several months ago a member from Florida had a similar set of experiences and they started diagnostics for MS. You can check here posts by looking at her profile but thought it might help you. Feel free to ignore. Please keep us up to date. You are doing really well standing your ground.

healthunlocked.com/mymsaa/p......

[Hali12 in reply to Hidden]

Thank you for that link I am now following her she going to go for lumber as well. 😊

[Hidden in reply to Hali12]

I just thought seeing someone in same boat might help. Like you she wasnt treated very well. Best wishes.

[Hali12 in reply to Hidden]

Thank you again

[SheffieldJane]

Yes, how are you now Hali? We are all rooting for you! 🍀

[shella]

Good luck ..... it’s so stressful having to argue every step of the way!

[Hali12 in reply to shella]

You are not kidding it’s like pulling teeth or speaking to a wall. I don’t know which one will do the trick.

[yogabonnie]

So stressful! pulling for you. !!!

[Jackoh]

Unbelievable!!! But unfortunately not really. Thinking and praying for you Hali12 that you will see the right medical staff and receive the right treatment. Keep us informed. Xx

[karools16]

So glad you at the hospital. Keep at staff until something done and you get a proper diagnosis. Big hugs. xxxx

[Telian]

Thinking of you Hali12 - I too am halfway under the MS umbrella! Do you feel any better after the IVs? If the spinal tap comes back showing antibodies that doesn't mean it's MS either it just means you have inflammation somewhere - it can't say where it's coming from - it's a difficult one for you and them.

Best wishes to you and question everything they say and so, I know it's hard when you feel crap but hang in there..

[Hali12 in reply to Telian]

Unfortunately I am still the same when I woke up this morning no changes.

[Hidden in reply to Hali12]

But hopefully no worse.

[Hali12 in reply to Hidden]

No change still same pain. I am however getting a slight headache on the other side. Don’t know why. It’s bad enough that it’s on one side but now it’s on both sides.

[Hidden in reply to Hali12]

Oh dear. Hoping things start to calm a bit.

[Telian in reply to Hali12]

Can only wish you luck as they go through the investigations - really hope you start to feel better soon..

[sondya]

My experience was completely different. GP was unsure of a correct diagnosis, referred me to the diagnostic unit of our local hospital. First came the ultrasound, next, a couple of days (overnighting in hospital) where I had blood tests, CT scan, xrays and checks by consultants of various fields, each coming up with their findings and the consensus was that it was vascular and most likely GCA. Next day, more tests at the eye clinic where no pressure detected at the back of my eyes but advised a biopsy of a 'minor' temporal artery. Medications given to me and I was sent home. Biopsy carried out a week later which was positive. I was told I was very fit, to keep exercising, eat well with no restrictions, that the condition is very treatable and should be over in a couple of years. This is how I started my journey through hell. My GP and the rheumatologist agreed to share their case notes (including blood tests from labs) with me as I said I wanted to know exactly what was happening, to be able to differentiate what was the disease, what were caused by the side effects of drugs. CRP level dropped from 76 to 4 in a few of weeks. Then came the long tapering off prednisone. I was told the GCA had gone, now I am down to 1mg per day and expect the rheumatologist to give me a clean bill of health soon. It's been 14 months, consultations and blood tests will continue for another year or so.

I live in New Zealand where hospital stays, x-rays, scans and surgical operations are free for all citizens and permanent residents under our national health service. I pay for medications but these are subsidised to $5 per prescription. Blood tests are free. Even the richest of my friends say there is no need for insurance policies as national health care covers all.

I was also given a disability allowance to cover things I can no longer do - like lawn mowing. The allowance also covers doctors' visits, prescriptions, home help, transport - the list is endless.

[Michdonn in reply to sondya]

You are very lucky, here in the USA, we have a terrible medical system and getting worse, it is a shame the richest country in the world and cannot or will not care for it's people!

[LThomas in reply to Michdonn]

It's gone down hill since the LAST administration for sure. I'm keeping my fingers crossed that THIS administration can get it fixed, we will probably have to wait until the 'swamp' is drained.

[sondya in reply to Michdonn]

This is so wrong! The best doctors, researchers, a role model for other countries and yet can't offer affordable care for its own. Something very wrong with its moral values. Who can fix that?

[Michdonn in reply to sondya]

Only the people by voting for politicians who will make that a priority.

[Hali12]

Wow I think I show come and live in New Zealand. I have insurance here but you are also paying out of pocket as well. Not fun. The only thing is that I have not gone to my eye doctor. Unfortunately I don’t have insurance covers it.

[sondya in reply to Hali12]

Our annual income tax covers everything - health, education, roads, everything. And the astounding thing is we are a population of just 4.6 million people with an even smaller tax base. Some of your cities have more people!

My heart goes out to you, Huma, as I've heard of other (US) friends who cannot afford to have their serious illnesses covered by insurance. One (in CA) had her eyes operated on with financial support by a social organisation (like The Lions Club) - she had no insurance.

[Hali12]

😊 please just pray for me

[Rugger in reply to Hali12]

Stay strong knowing we are all thinking of you. x

[karools16 in reply to Hali12]

Oh Yes, dear Hali12, am praying for you and your sad situation. May you be diagnosed soon and properly. May you be surrounded by kind nursing staff. We are fortunate in England. Me, especially, when I think of the dreadful state care in S.Africa. Am sending guardian angels around your bed. Sleep well. xxx