Rheumatologist, treatment, the journey so far

[LivingwithFibro]

Today I finally saw a rheumatologist in Pakistan and she officially diagnosed me with Chronic fatigue syndrome.

It took me a long time to get here, but I'll be documenting my journey in this thread. I finally feel brave and open enough to do this, especially as there are no resources in my country for Cfs.

I also work for ME Action Network in spreading awareness, which is another factor in me creating this thread.

Now I can't type anymore.... I'll be posting some test results and history later.

I need your support more than ever, my PR family.

 

[Hajnalka]

 

[LivingwithFibro]

Vielen lieben dank, Joh

 

[LivingwithFibro]

Update:
Just had some blood tests, they took 4 vials of blood.... Feeling so dizzy....On the topic of the tests my private rheumatologist in Pakistan ( the one who diagnosed me with MECFS ordered)

These are these tests she ordered:
CBC – Complete blood count
ESR
HBSAG – Hepatitis B Surface Antigen
HCV – Hepatitis C Antibodies
ANA – Anti-Nuclear Antiboy
ADNA – Anti-DNA
RA – Rheumatoid Arthritis Factor (Quantitative)
UDR – Urine Detailed Report
CRP – C-Reactive Protein
SGPT/ALT – SGPT
CPK/CK – CPK
Ca – Calcium
VIT D
FA – Folic ACID
B-12 – b12
The thyroid panel is TSH, Free T3, Free T4, Thyroid antibodies

I just did CBC, ESR, folate (folic acid) serum, HBsAg, Hepatitis C virus antibody and ANA profile.

She also ordered an autoimmune panel, this is what's on the panel, let me know if you think it's useful for MECFS.

I've attached the antibodies tests to this post.

 

[Moof]

This is a standard screening protocol for autoimmune disease (I seem to have had most of them too, but then I do have an AI condition); it'll be useful to your rheumatologist in excluding various things.

The only thing I'd say about your other tests is that serum B12 tells you very little about whether or how efficiently your body is able to utilise B12. I suffered with severe deficiency for years because of this – my blood levels were always healthy due to the fact that I was taking supplements, but I wasn't actually able to absorb it properly. I learned later that homocysteine and MMA tests are more accurate, but my doctor relied on the serum results and never ordered them.

If you've taken any supplements containing B12 recently, they will have skewed the serum result – so if at any stage you suspect you could be suffering from B12 deficiency, it's worth stopping all supplementation for a couple of months and then asking for homocysteine and MMA tests.

 

[LivingwithFibro]

This is a standard screening protocol for autoimmune disease (I seem to have had most of them too, but then I do have an AI condition); it'll be useful to your rheumatologist in excluding various things.

The only thing I'd say about your other tests is that serum B12 tells you very little about whether or how efficiently your body is able to utilise B12. I suffered with severe deficiency for years because of this – my blood levels were always healthy due to the fact that I was taking supplements, but I wasn't actually able to absorb it properly. I learned later that homocysteine and MMA tests are more accurate, but my doctor relied on the serum results and never ordered them.

If you've taken any supplements containing B12 recently, they will have skewed the serum result – so if at any stage you suspect you could be suffering from B12 deficiency, it's worth stopping all supplementation for a couple of months and then asking for homocysteine and MMA tests.

Thank you for taking the time to respond. I hope you're having a lovely day.

Hats off to my rheumatologist!

Yeah, I'm taking mecobalamin Merck, can you provide more information about the homocysteine tests or MMA tests for b12, and how they might be incorrect? I'll raise the issue with my doctor.

What are other accurate ways to test for b12?

 

[LivingwithFibro]

Here are the results I have so far. Two tests: Rheumatoid factor and ANA. In a later post (when I feel better) hopefully I'll post the pharmaceuticals and supplements my rheumatologist prescribed.

 

[Moof]

Thank you for taking the time to respond. I hope you're having a lovely day.

Hats off to my rheumatologist!

Yeah, I'm taking mecobalamin Merck, can you provide more information about the homocysteine tests or MMA tests for b12, and how they might be incorrect? I'll raise the issue with my doctor.

What are other accurate ways to test for b12?

I think it's just that assessing B12 status isn't a very accurate science, according to the private doctor I saw about it. The homocysteine and MMA are by far the most reliable indicators, but serum B12 is not. If you're on supplements, there may be no point in being tested at the moment, especially if you're having to pay – maybe ask the doctor, and tell him/her what you're taking?

Mine told me that I'd have to come off all supplements for quite a while if I wanted an accurate indication of my ability to absorb B12. I had severe memory loss, cognitive difficulties that were starting to look like premature dementia, peripheral neuropathy, hair loss, and very troublesome mouth sores, so I just decided to go ahead with injections of hydroxocobalamin without being tested (it's a non-toxic water soluble vitamin, so there are few risks attached). I saw improvements within three weeks and continued to gain function for several months, so that answered my question about whether or not I was deficient!

 

[LivingwithFibro]

I think it's just that assessing B12 status isn't a very accurate science, according to the private doctor I saw about it. The homocysteine and MMA are by far the most reliable indicators, but serum B12 is not. If you're on supplements, there may be no point in being tested at the moment, especially if you're having to pay – maybe ask the doctor, and tell him/her what you're taking?

Mine told me that I'd have to come off all supplements for quite a while if I wanted an accurate indication of my ability to absorb B12. I had severe memory loss, cognitive difficulties that were starting to look like premature dementia, peripheral neuropathy, hair loss, and very troublesome mouth sores, so I just decided to go ahead with injections of hydroxocobalamin without being tested (it's a non-toxic water soluble vitamin, so there are few risks attached). I saw improvements within three weeks and continued to gain function for several months, so that answered my question about whether or not I was deficient!

Thank you. That was helpful. I'll inform my doctor.

 

[LivingwithFibro]

I got my results (Except for ANA), that takes more time. Will post them tomorrow. I didn't understand much of what was in the CBC or ESR reports.

 

[LivingwithFibro]

Here they are. Will post ANA on Saturday. I feel do frustrated because everything looks normal but I don't feel anything but normal. I'm in so much pain and severely housebound.

Would anyone care to look at these? @Jonathan Edwards

 

[LivingwithFibro]

 

[Moof]

This is part of the problem – it's not that we're not ill, it's that they're testing the wrong things! Unfortunately, we don't have a test for ME at the moment. But at least your doctor can use the results to rule a lot of things out; in the absence of an accurate test, it's about the best they can offer.

 

[LivingwithFibro]

This is part of the problem – it's not that we're not ill, it's that they're testing the wrong things! Unfortunately, we don't have a test for ME at the moment. But at least your doctor can use the results to rule a lot of things out; in the absence of an accurate test, it's about the best they can offer.

Finally got the ANA report...