G’day, new here

[Harpy]

Darn lost my reply. I have been told I have small vessel disease, 3 years now. |My balance is gone and headaches are constant. Ben told I have FB for 25 years. Now what? my GP just said vascular dementia and that is it Ok thanks for the help I have been trying everything now they just leave me. No help. What do I do now. I still have FB or is my brain dying and making me think I have FB. All the same symptoms. Has anyone else had more scans and results and answers?

I have started drinking souvenaid (sorry about spelling) it’s has been proven apparently to help dementia symptoms.
I can’t really help as I’ve just been diagnosed with CSVD and waiting till end of year for new MRI to see how much it’s progressing. I am hope slow enough they won’t see a difference.

I seen my skin cancer dr yesterday, had my full body check up.
She froze 3 spots off my arm and cut out a small one off my forehead on my hairline she knew instantly was bcc and did a biopsy on one near my ear she thinks is scc.
I go back in 7 days for results and to get stitches out.

Have you all checked your skin lately?

 

[Auriel]

Aw, Harpy, are there more melanomas?, or is the dr just being cautious? Aw, I'm sad for you now (all this cutting bits out of you) but prevention is better than cancer, also never heard of souvenaid before (I don't think we've got that in the uk

 

[Harpy]

Aw, Harpy, are there more melanomas?,

The one she cut out she knew instantly was a bcc.
The biopsy one she is sure it was scc , so all good no melanoma this time.

or is the dr just being cautious? Aw, I'm sad for you now (all this cutting bits out of you) but prevention is better than cancer, also never heard of souvenaid before (I don't think we've got that in the uk

That’s it Auriel, I don’t care, just cut it out early and be gone. My face is mapped with scars but hey one day they may eventually pull all my wrinkles out

The souvenaid does seem to have a good results, it’s just so expensive.

 

[johnsalmon]

I know it’s not the same med but whe my flares out of control my rheumatologist lets me take prednislone for 6 days and my word it’s like a miracle. I feel so alive when there’s no continuous crippling pain.

its the same tablet - it changes my life completely - my doctor is over careful in prescribing it but has me now on a 15 mg a day which works wonders no pain feel good and actually want to converse with people(no pain) however this drug has about 4 pages of side effects none which I have but in a high covid area as the town is it leaves one open to infection. But I am going to push the Doctor to keep me on it.

 

[johnsalmon]

made a double post can't now delete this so don't take any notice of it one of the moderators might like to delete this post

 

[Harpy]

its the same tablet - it changes my life completely - my doctor is over careful in prescribing it but has me now on a 15 mg a day which works wonders no pain feel good and actually want to converse with people(no pain) however this drug has about 4 pages of side effects none which I have but in a high covid area as the town is it leaves one open to infection. But I am going to push the Doctor to keep me on it.

My tablets are 5 mg, I take two for so long (depending on my flare, normally 4 days) then one a day for the same days.
I know it can cause osteoporosis so I am not aloud to do it continuously.
But I don’t get any other side effects. And it’s soooooo worth the relief.
Can I ask how long you’ve been on em?
Been 9 months for me. That’s a bottle of 60, so I have been good with them.

 

[johnsalmon]

Can I ask how long you’ve been on em?

my doc put me on 25mg a day for 3 days then 5mg a day but the 5mg made no difference so she utp it 15mg a day which work - I have to go back to her on the last day of my script - she is afraid of the side effects and the possibility of covid and flue. She is an excellent doctor but very cautious of precising medication until I see the neurologist and rheumatologist . My neurologist would probably prescribe it over the Telehealth visit but I am going to see him in person at the hospital as the Doc wants a face to face visit with him
The 3 days on 25mg was like magic it knocked a few years of my age - It also cleared up a lot of my Hashimoto problems - no split nails , no skin problems etc

so far I been on them for about 3 weeks and no side effects

 

[Harpy]

my doc put me on 25mg a day for 3 days then 5mg a day but the 5mg made no difference so she utp it 15mg a day which work - I have to go back to her on the last day of my script - she is afraid of the side effects and the possibility of covid and flue. She is an excellent doctor but very cautious of precising medication until I see the neurologist and rheumatologist . My neurologist would probably prescribe it over the Telehealth visit but I am going to see him in person at the hospital as the Doc wants a face to face visit with him

I prefer face to face, very rarely do a telehealth. Unless I having a flare and can’t drive.

The 3 days on 25mg was like magic it knocked a few years of my age -

It is a good feeling of being “ normal” for a bit.

It also cleared up a lot of my Hashimoto problems - no split nails , no skin problems etc

Oh what’s the go with the split nails, deep ridges , peeling and the breaking way too far down

so far I been on them for about 3 weeks and no side effects

That’s good. A weeks the longest I been on them. My mom has been on them months at a time and do wonders for her too.

 

[johnsalmon]

I prefer face to face, very rarely do a telehealth. Unless I having a flare and can’t drive.

only drive around town no more the 50Km from home. Get the Medical car to my appointments usually down in Newcastle that usually cost me $70 a trip. Normally my neurologist does not have to see me face to face as its usually a review of my meds and an update on Symptoms but as he questioned the fibromyalgia diagnoses he wants to run some tests. I am on the max dose for my essential tremor now so he can't do much for me on that condition. He not sure if the conditions of not been able to swallow , food in the airway, change of voice and some times not been able to form words is essential tremor or related to the pains and flares ie essential tremor, fibromyalgia or some thing else.

 

[Harpy]

only drive around town no more the 50Km from home. Get the Medical car to my appointments usually down in Newcastle that usually cost me $70 a trip.

Oh ditto, jhh is the furthest I drive, it’s just too much on the spine. I am lucky to have my kids on hand and friends at the ready for any further driving or when I get injections.

Normally my neurologist does not have to see me face to face as it’s usually a review of my meds and an update on Symptoms but as he questioned the fibromyalgia diagnoses he wants to run some tests.

I think it’s a heck of a lot easier to have a phone consult but come on Medicare, it’s not much difference in dr bill so that’s generally why I rather face to face. If I am paying the $$ for the consult I rather talk face to face.
Can I ask why he is questioning your FM diagnosis?

I am on the max dose for my essential tremor now so he can't do much for me on that condition. He not sure if the conditions of not been able to swallow , food in the airway, change of voice and some times not been able to form words is essential tremor or related to the pains and flares ie essential tremor, fibromyalgia or some thing else.

My dysphasia was put down to my gerd, but my osteopath says it’s coming from the stenosis in my neck.
We know or bodies much better than a dr. Are you leaning a certain way as to what’s causing yours?

 

[Auriel]

@Harpy good support network

 

[johnsalmon]

Can I ask why he is questioning your FM diagnosis?

he is worried about my problem with swallowing,voice change and mostly about food going into the airpipe - which is getting worse - he is worried about ALS which shares similar flares and pains but unlike Fibromyalgia does effect the muscles that control the above. As I said I hope its fibromyalgia!!

I don't have phone visits I do it on the internet that way he can see how the tremors are and give me the touch the nose type tests. John Hunter has its own app for that I Am a pensioner so don't have to pay for the consultation at John Hunter

I don't have dysphasia my problem is the muscles in the voice box and throat - I will form a word but because of the muscle problem the output word is malformed also some times I cannot make the muscles produce the word I want - essential tremor affects the muscles but only on muscles defying gravity ie hands arms etc so the above problem is very unlikely to be essential tremor.
with fibromyalgia and these types of conditions it so hard for a Doctor to actually diagnose it really simply relies on what we tell them and how they can best fit that information to known medical conditions. its what you call imprecise science

 

[Harpy]

he is worried about my problem with swallowing,voice change and mostly about food going into the airpipe - which is getting worse - he is worried about ALS which shares similar flares and pains but unlike Fibromyalgia does effect the muscles that control the above. As I said I hope its fibromyalgia!!

Yeh wow, not good. ALS isn’t horrible, I lost a dear friend only 28 to that a few years ago.

I don't have phone visits I do it on the internet that way he can see how the tremors are and give me the touch the nose type tests. John Hunter has its own app for that I Am a pensioner so don't have to pay for the consultation at John Hunter

My gastro and neurosurgeon is at jhh too and yep free , thanks there Medicare.
I meant generally for specialists and gp appointments, they are too expensive.
With the cost of everything something has to give soon.
I collected my canni-med this morning $262.70. My income for the week is $258. So nothing extra for me this week .

I don't have dysphasia my problem is the muscles in the voice box and throat - I will form a word but because of the muscle problem the output word is malformed also some times I cannot make the muscles produce the word I want - essential tremor affects the muscles but only on muscles defying gravity ie hands arms etc so the above problem is very unlikely to be essential tremor.
with fibromyalgia and these types of conditions it so hard for a Doctor to actually diagnose it really simply relies on what we tell them and how they can best fit that information to known medical conditions. its what you call imprecise science

That sure would be difficult, with so many other problems with very similar symptoms I would not like to be a gp.
You seem very knowledgeable, so you have that on your side to help with the correct outcome.
I used to but my memory is so bad I find it hard to put the right words together half the time . but now I blame my recent diagnosis of CSVD. It’s my dementia I tell people when they say ‘ you already said that” oh boy that upsets me.

 

[johnsalmon]

my dementia

i have old age dementia - not as bad as it could be - I use the test on Neronation to exercise the brain and that has made a difference - about a 25% increase since I started. I take Kh3 which make a bit difference in my memory and I keep active doing short courses on the internet - the trick is to keep using the brain and making it work
"specialists and gp appointments, they are too expensive."
yep had to pay near to $400 for my cardiac specialist and will fork out around $400 for the rheumatologist - did make an appointment to see a rheumatologist at John Hunter but they said it would be at least 2 years wait! I got to see my neurologist at John Hunter in 1 day as I suffered a TIA some years ago

yep costs are going up everywhere

 

[Harpy]

i have old age dementia - not as bad as it could be I use the test on Neronation to exercise the brain and that has made a difference - about a 25% increase since I started. I take Kh3 which make a bit difference in my memory and I keep active doing short courses on the internet - the trick is to keep using the brain and making it work

My mom is 83 and has dementia, but not bad I am pretty sure my memory is way worse than hers.
I do a lot of word games/puzzles. Read a lot of news.
My mom leaves half her puzzles in magazines for me to do lol pretty sure she does the easy half

"specialists and gp appointments, they are too expensive."
yep had to pay near to $400 for my cardiac specialist and will fork out around $400 for the rheumatologist - did make an appointment to see a rheumatologist at John Hunter but they said it would be at least 2 years wait! I got to see my neurologist at John Hunter in 1 day as I suffered a TIA some years ago

That’s so good you got in quickly. Don’t happen often.

yep costs are going up everywhere

Cost are just getting to the impossible stage. Soon we will start cutting out a lot of shopping, turning more power off.
It took me 4 years wait at jhh to get into the gastroenterologist.