1. < Autoimmune Diseases

Autoimmune diagnosing

Posted by bunnysammy @bunnysammy, Jun 30, 2018

Hi, I'm just a bit frustrated and wanted to talk to some people going through the same things. I thought I had Celiac disease but because I really don't like going to the doctors I avoided getting a for sure diagnosis and went gluten free. It's definitely helped with a lot of my symptoms. I got a blood test a few months ago for my doctor. My platelet count was extremely low as well as my iron and b12. She told me it looked like something autoimmune but I didn't know what that meant and she didn't press me to see other doctors about it. She also mentioned something seemed strange with my bone marrow. I didn't think anything of it. I thought the vitamins she suggested were all I needed. Well in the past couple months I've been in more pain than usual. Sharp chest pains, stiff and painful joints and I ache everyday. I've also had a persistent low grade fever. I get sharp pains in my hands too. I feel super weak and fatigued daily which I've always had bouts of but for awhile being gluten free helped. I can't keep up with my boyfriend when we go on walks anymore. My pain keeps me up at night. I have a few other symptoms but these are the most frustrating ones. Does anyone have any idea what this could be? I set up a doctors appointment but it'll be another month till they can see me.

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sylvia67 | @sylvia67 | Oct 24, 2021

Hello
My oncologist suggests I get it???
He says, you never know if SCT gets pushed back for some reason and I should be vax’d
I will be having autogolous SCT

I also asked the SCT hematologist and he said get it too.

I’ve been handling chemo pretty well… mostly gastrointestinal issues but I’m handling it ‘overall’ well.

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 24, 2021
In reply to @sylvia67 "Hello My oncologist suggests I get it??? He says, you never know if SCT gets pushed..." + (show)
@sylvia67

Hello
My oncologist suggests I get it???
He says, you never know if SCT gets pushed back for some reason and I should be vax’d
I will be having autogolous SCT

I also asked the SCT hematologist and he said get it too.

I’ve been handling chemo pretty well… mostly gastrointestinal issues but I’m handling it ‘overall’ well.

Jump to this post

If both of your doctors are suggesting this vaccine, I’d go ahead with it. How many more cycles of chemo do you have? Depending on completion of treatment, could you have the vaccine in December or early January, at last 2-4 weeks before transplant? Would you feel more comfortable waiting until your treatments are over?

Having an autonomous SCT, you won’t some of the other issues associated allo transplants such as Graft Vs Host disease. So you won’t be receiving anti rejection meds which further cause your immune system to be compromised. Though initially you’ll have antibiotics and antifungal meds to keep you safe until your bone marrow starts producing blood cells again.

Unfortunately, anytime we have a blood cancer, even in remission, our immune system won’t ever be as robust as before With the conditioning chemo right before transplant you will lose all immunity as it cleans out your marrow of all diseased cells. However, since you’ll be receiving your own cells in the transplant you’ll be restoring your immune system, complete with your killer T and B-memory immune cells. So anything you do now to boost your immunity will live on. ☺️

Chemo is rough on the digestive system. Are you able to eat yogurt? That seemed to help keep things calm for me.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 24, 2021
In reply to @sylvia67 "Hello My oncologist suggests I get it??? He says, you never know if SCT gets pushed..." + (show)
@sylvia67

Hello
My oncologist suggests I get it???
He says, you never know if SCT gets pushed back for some reason and I should be vax’d
I will be having autogolous SCT

I also asked the SCT hematologist and he said get it too.

I’ve been handling chemo pretty well… mostly gastrointestinal issues but I’m handling it ‘overall’ well.

Jump to this post

@sylvia67 As @becsbuddy and @loribmt mentioned, I am undergoing chemo [Revlimid + Dexamethasone + Bactrim] for multiple myeloma, also in my 3rd round like you. I got my third shot just before starting chemo in Aug. In fact, we had Pfizer vaccines [me 1/24/21 and 2/14/21] and as soon as they talked about it, I called my oncologist, he said "get it if you can". So, I ran down to Walmart and said I was starting chemo the next day ad they gave me the third shot right away.

I have had only one night of gastro issues, thank goodness. Did get the Revlimid rash on lower legs during first round, but it cleared up during the one week break, not to return [knock on wood!]

Wishing you success on your SCT and hope you will let me know how it goes, okay?
Ginger

REPLY
1 reply
sylvia67 | @sylvia67 | Oct 24, 2021
In reply to @loribmt "If both of your doctors are suggesting this vaccine, I’d go ahead with it. How many..." + (show)
@loribmt

If both of your doctors are suggesting this vaccine, I’d go ahead with it. How many more cycles of chemo do you have? Depending on completion of treatment, could you have the vaccine in December or early January, at last 2-4 weeks before transplant? Would you feel more comfortable waiting until your treatments are over?

Having an autonomous SCT, you won’t some of the other issues associated allo transplants such as Graft Vs Host disease. So you won’t be receiving anti rejection meds which further cause your immune system to be compromised. Though initially you’ll have antibiotics and antifungal meds to keep you safe until your bone marrow starts producing blood cells again.

Unfortunately, anytime we have a blood cancer, even in remission, our immune system won’t ever be as robust as before With the conditioning chemo right before transplant you will lose all immunity as it cleans out your marrow of all diseased cells. However, since you’ll be receiving your own cells in the transplant you’ll be restoring your immune system, complete with your killer T and B-memory immune cells. So anything you do now to boost your immunity will live on. ☺️

Chemo is rough on the digestive system. Are you able to eat yogurt? That seemed to help keep things calm for me.

Jump to this post

Thank you so so much for your info!! I actually would feel more comfortable waiting until chemo is over…maybe I’ll bring this up again with oncologist and say I prefer to wait till after chemo.
The information you have given me here is more than I can get from my oncologist. Thanks again!! Greatly appreciate it

REPLY
sylvia67 | @sylvia67 | Oct 24, 2021
In reply to @gingerw "@sylvia67 As @becsbuddy and @loribmt mentioned, I am undergoing chemo [Revlimid + Dexamethasone + Bactrim] for..." + (show)
@gingerw

@sylvia67 As @becsbuddy and @loribmt mentioned, I am undergoing chemo [Revlimid + Dexamethasone + Bactrim] for multiple myeloma, also in my 3rd round like you. I got my third shot just before starting chemo in Aug. In fact, we had Pfizer vaccines [me 1/24/21 and 2/14/21] and as soon as they talked about it, I called my oncologist, he said "get it if you can". So, I ran down to Walmart and said I was starting chemo the next day ad they gave me the third shot right away.

I have had only one night of gastro issues, thank goodness. Did get the Revlimid rash on lower legs during first round, but it cleared up during the one week break, not to return [knock on wood!]

Wishing you success on your SCT and hope you will let me know how it goes, okay?
Ginger

Jump to this post

You were on the ball, getting booster before starting chemo. Here in Canada, it has just been offered recently. I started chemo in August as well. Thanks for the reply. Sounds like we are in same boat with myeloma. I’m on Dex, cyclophosphamide, and bortezombib once a week. I don’t have a one week break (Apparantly because I’m doing SCT, I don’t have 1 week break).
I wish you all the best Ginger!!! I shall stay in touch. We got this!!!❤️

REPLY
oldkarl | @oldkarl | Oct 25, 2021

@bunnysammy This is short and easy. Doctors like to be lazy, especially when they think it will bring them more money. I have no sympathy for that. The first thing you need to do is to talk to a doctor who will order a whole genome sequencing for you. This will easily rule a big bunch of stuff which is not in your body. Or, to say it gently, regardless of what the doctor says, for a disease, if you ain't got the genes, you ain't got the disease. Find a geneticist who will help you through this search. You will need to have a genetics lab/geneticist who will work with Medicare and/or your insurance company, or pay the $500 yourself. If you have the freight to pay yourself, a good lab is Sequencing.com. There are many others. Dante Labs, etc. I would guess you have some sort of myeloma, maybe Crohn, Amyloidisis, etc. But until you get that WHOLE GENOME SEQUENCING, you are just wasting money. You can ask a reputable lab such as JohnHopkins, or Karmanos, or City of Hope. It would be nice if Medicare would make public a list of labs who have been approved by Medicare and insurances as providers.

REPLY
1 reply
hmccarth5 | @hmccarth5 | Oct 26, 2021
In reply to @oldkarl "@bunnysammy This is short and easy. Doctors like to be lazy, especially when they think it..." + (show)
@oldkarl

@bunnysammy This is short and easy. Doctors like to be lazy, especially when they think it will bring them more money. I have no sympathy for that. The first thing you need to do is to talk to a doctor who will order a whole genome sequencing for you. This will easily rule a big bunch of stuff which is not in your body. Or, to say it gently, regardless of what the doctor says, for a disease, if you ain't got the genes, you ain't got the disease. Find a geneticist who will help you through this search. You will need to have a genetics lab/geneticist who will work with Medicare and/or your insurance company, or pay the $500 yourself. If you have the freight to pay yourself, a good lab is Sequencing.com. There are many others. Dante Labs, etc. I would guess you have some sort of myeloma, maybe Crohn, Amyloidisis, etc. But until you get that WHOLE GENOME SEQUENCING, you are just wasting money. You can ask a reputable lab such as JohnHopkins, or Karmanos, or City of Hope. It would be nice if Medicare would make public a list of labs who have been approved by Medicare and insurances as providers.

Jump to this post

Best information ever, thank you for this! And you are right, doctors keep patients coming for the $$ and frankly I am tired of it! You get a huge "star" for the day, lol!

REPLY
rexsan20 | @rexsan20 | Nov 19, 2021
In reply to @bunnysammy "I set up an appointment with a rheumatologist who does naturopathic medicine and western. I've been..." + (show)
@bunnysammy

I set up an appointment with a rheumatologist who does naturopathic medicine and western. I've been writing everything down too. I just don't have anyone to talk to about it who gets it and I found this place. Last night the joints in my right hand were so painful I couldn't grasp anything and I had to cook with my left.

Jump to this post

what is naturopathic medicine? I have Sjogren

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 20, 2021
In reply to @rexsan20 "what is naturopathic medicine? I have Sjogren" + (show)
@rexsan20

what is naturopathic medicine? I have Sjogren

Jump to this post

@rexsan20 I saw your question about naturopathic medicine and decided that I’d best look it up. I only have minimal knowledge of it.
https://www.webmd.com/balance/guide/what-is-naturopathic-medicine
Are you wondering if naturopathic medicine would help with your sjogren’s disease?

REPLY
ginnywilson | @ginnywilson | Nov 21, 2021

With your symptoms you may be better to ask your Dr to refer you to an endocrinologist. I have had Addison’s disease for 20 years which is an autoimmune problem and my Dr referred me to an endocrinologist who made the diagnosis. There are many autoimmune diseases that could display some of your symptoms. I hope you seek some help.

REPLY
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