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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hi Sammy I am also new to the Mayo Clinic. I share in your pain I was diagnosed two months ago with mixed connective tissue disease. So I experience the same you do and more. I haven’t started treatment yet I so scared because we have two little kids that rely on me still a lot. I have managed my pain a bit with using cannabis in a hubbly at night when the pains become to much and then I drink a herbal pain medication called “ Threshold Real MSM” I take two at a time it helps me sleep better and also drink rehydration water regularly. My doctor told me that if the cannabis cakes or thru hubbly works for me I can use it as it’s more natural and is a good herb that doesn’t harm you as long as you are taking it in moderation. It also helps you to relax so that you muscles don’t tenses up. I will also be see the physician soon to discuss treatment.

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Can anyone with Multiple Myeloma share their experience if they have taken the 3rd covid booster shot. I’m in my cycle3 for myeloma chemo and will be doing stem cell transplant in Jan/Feb 2022. I’m afraid of side affects with booster shot/chemo mix??
Thank you

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@sylvia67

Can anyone with Multiple Myeloma share their experience if they have taken the 3rd covid booster shot. I’m in my cycle3 for myeloma chemo and will be doing stem cell transplant in Jan/Feb 2022. I’m afraid of side affects with booster shot/chemo mix??
Thank you

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Hi Sylvia. Have you talked to your oncologist about the 3rd booster shot? They may defer you until you’re finished with the chemo. It’s a lot going on in your body right now.
How are you tolerating the chemo so far? Are you having an autologous stem cell transplant where you’ll be using your own cells?

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@sylvia67

Can anyone with Multiple Myeloma share their experience if they have taken the 3rd covid booster shot. I’m in my cycle3 for myeloma chemo and will be doing stem cell transplant in Jan/Feb 2022. I’m afraid of side affects with booster shot/chemo mix??
Thank you

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Hi, @sylvia67 @loribmt gave you great advice about talking with your doctor before you make any decisions! We’ll also ask @gingerw for her opinion. She is currently receiving chemo for multiple myeloma.

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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.

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@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.

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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.

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@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.

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@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

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@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.

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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

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@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

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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!!!❤️

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@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.

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@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.

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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!

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@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.

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what is naturopathic medicine? I have Sjogren

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