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Old and new sypmtoms


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First side note: My dad is still at rehab but I think the infection is clearing yea.

But today my post is to ask your opinion. We all know how POTS can give you some symptoms on one day and another set another day as well as the ones we have that are always there. Anytime anything new pops up I try and remember Mighty Mouse's rule of 4 days. I have been at this POTS thing for 9 years and lately a few new things have popped up that have not gone away. So I went to my primary care doc and said ok what about these things. He ordered some tests and we got sort of a result. Anyway here is my question. The new things are spells of coughing, diarrhea and stomach cramps, new rash seems to be what happens when there is inflammation in the vascular system. I have also had much more joint pain and stiffness in the last year. And my digestion is just always a challenge. Anyway sorry rambling a bit tired.. my sed rate came back elevated. Now all through out this illness I have had high sed rates and doctors have always sort of brushed it off. So I guess my question is if you had a high sed rate and symptoms of vasculitis but are not sure would you brave a new doctor? I just don't want to go through all this and end up right back here with no help and dealing with it. My husband says we have got to go in there with the attitude that this probably won't tell us anything but lets go anyway. I always get the idea oh look a result now they can fix something. Or a new doctor he will help. And usually I end up crying on the way home. It took 3 years to get my POTS dx and still the other day an orthopedic guy said, so why the wheel chair. I explained and he looked at me and said well I've never heard of it. (Sorry mini-vent) :o

Ok so if you can get thorough this rambling I will state again and try to be clearer. Have had new symptoms for awhile, seems to be some sort of vasculitis, high sed rate but have had the high sed rate before. Is it worth it to investigate?

My husband just said that the collective wisdom and knowledge on this board is probably better than most doctors!


Stacey :-) :(

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Yes, I would definitely pursue this furthur. I would look for a good internist. I'm not sure all the symptoms you mention are POTS related, so I would have them checked them out. I know what you mean about having to start with a new doc, but maybe that's the only way you will be taken seriously. I hope you get some explanations. Martha

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How high was your Sed rate?

I have to say that most doctor's really don't know how to read certain lab tests! I would also like to say that each doctor is individual in whether or not they'll be impressed by your result. One doctor might think it's significant and another might not think anything of it.

I've had elevated Sed rates and my rheumatologist said that he wasn't impressed at all.

Ok that's my 2 cents worth, sorry it's not much help.


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I too had those symptoms. I just got back from Mayo my two weeks of worship!!!!! My sed rate is still elevated as well as my rheumatoid factor. I did have a biopsy in Sept for a breast problem and it showed that my mast cells were involved. The rash is I found out part of vasculitis which is a part of potts. All of your other symptoms have been part of my life too. The main thing that keeps me sane (I THINK) is that I have a core group of support docs, including a therapist who helps to empower me when I am too weak. He only works with people with health issues, that helps. I have seen an endocrinologist and a rheumatologist and both have been helpful, but also knew or learned about pots. So if you go to a new doc take info with you to give to them if they aren't aware.

Blessings Miriam :rolleyes:

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Thank you! My sed rate was 55. It has been as high as 111 but that was years ago. Had not had a sed rate done in awhile so the 55 was surprising.

Miriram--your posts are always so helpful thank you . A question are they treating your vasculitis seperatly(sp?) or as an aspects of POTS..I kind of figured that it would all end up to be POTS related, it always has but since it was a new thing I thought I should investigate. Think I still will. the problem is that I live in a small town and most of the doctors have no concept of POTS and so like you said informing them is the important thing.

Ok I will gird my loins(whatever that means :) ) and make the appointment. It is with a rhuemtologist.

Thanks for all your support


Michelle S. the board really needs to add a spell checker!!! :wacko::rolleyes::wacko::wacko::wacko:

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The vasculitis is part of potts, the connective tissue part is what makes the small vessels pop. I found this out after they tried a 24 hr BP test and my arms were full of poppes vessels within 5 minutes. This is why the exercise part is so important, the muscles absorb more of the pressure.

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Did you have an ANA done? Glad to hear you're seeing a rheumatologist. He/she is best suited to deal with high sed rates and any possible autoimmune disease.

Hope these symptoms go away soon for you.


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Hi Merrill! I will try to answer that... They look at your sedementation rate of your red blood cells (blood is drawn and the lab tech measures the distance that red blood cells settle in unclotted blood toward the bottom of a test tube). as an indicator of inflammatory or malignant diseases. It can indicate rheumatologic disorders like lupus, rheumatic fever, or rheumatiod arthritis for example. This can be linked to POTS as some people with these conditions (Lupus for example) will develope POTS symptoms. I think this is correct and I hope it makes sense! Laura!

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ESR is used to indicate inflammatory or malignant disease as in the following

Elevated values occur with:

Kidney disease


Rheumatic fever

Rheumatoid arthritis

Severe anemia


Systemic lupus erythematosus

Thyroid disease


Markedly elevated values occur with:

Giant cell arteritis

Multiple myeloma

Macroglobulinemia - primary

Hyperfibrinogenemia (elevated fibrinogen levels in the blood)

Necrotizing vasculitis

Polymyalgia rheumatica

Lower-than-normal levels occur with:

Congestive heart failure


Hypofibrinogenemia (decreased fibrinogen levels)

Low plasma protein (due to liver or kidney disease)


Sickle cell anemia

Additional conditions that may affect test results:

Allergic vasculitis

Atrial myxoma, left

Atrial myxoma, right

Autoimmune hepatitis


Eosinophilic fasciitis


Juvenile rheumatoid arthritis

Legionnaire's disease


Pelvic inflammatory disease (PID)

Pericarditis, post-MI

Retroperitoneal fibrosis

Skin lesion of blastomycosis

Subacute thyroiditis

Systemic sclerosis (scleroderma)

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Okay I may be reaching here a bit but as I was researching this a bit I came across that rhuematic fever can occur after Scarlett fever. I had scarlett fever when I was about 13 or 14. Also around that time was when they found my MVP but they called it extra tissue balloning on my heart. I can't remeber if that was before or after the Scarlett fever. Now does anyone know if I coud have developed the rhuematic fever and never really known until this POTS started?? If anyone has run across anything let me know. Thanks. I am always trying to find explanations and since doctors don't seem to relate one thing to another unless it is in their field you have to kind of point the way. Anyway I am going to see a rhuemtologist and we will see. The petachiea rash is what has me thinking the vasculitis and with the sed rate. But we will see what she says.

I did have an ANA and it was negative.

Thanks for all the info.

Stacey :-)

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:lol: Mt petikiah rash was from rpressure to my arms. They explained that it is part of the connective tissue and that is why the pet.... pop when pressure like BP is added. The rheumatologist is good, my cardioogist at mayo knew alot more about it. Apparently it does have something also to do with your heart, the pressure. Anyhow you are doing all the right things,, just having someone check you and they can refer you is the way to go. Miriam
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