Aa
Have You Been Referred to a Rheumatologist?
I’ve seen quite a few posters mention appointments with rheumatologists and would like to open this up for a better understanding for those of us in Limbo Land. Have you been referred to a rheumatologist?
If so, I have a gazillion (just a tad bit exaggerated) questions.
Did your neuro explain in detail the thought process behind the recommendation and possible diagnoses?
What tests did your neuro do to rule out other autoimmune diseases before making the recommendation?
Did your neuro recommend any particular specialty within rheumatology?
Have you seen a rheumatologist yet? If so, where are you in the process?
My neuro has recommended that I see a rheumie. My understanding of this decision is that first, she does not believe that my brain lesions are consistent with MS and secondly, she says that joint pain has been one of my complaints and perhaps the rheumy can come up with an explanation for this pain (which I believe is due to muscle spasms) and give me injections to relieve the pain.
There have been multiple panels of tests done to date which appear to rule out Lupus, Lyme Disease and other tick borne diseases, Sjogrens and tests for rheumatoid factor have all come back negative. The last round of tests included several for vasculitis, which also came back negative.
My neuro did not recommend any particular specialty, just Yale New Haven. I selected a rheumy who listed joint disease and autoimmune disease as areas of interest. After two weeks, I received a letter informing me my appointment is scheduled for 5 months away.
Most rheumie’s within easy commuting distance specialize in arthritis and Lyme Disease.
Would love to learn more from others.
Audrey
If so, I have a gazillion (just a tad bit exaggerated) questions.
Did your neuro explain in detail the thought process behind the recommendation and possible diagnoses?
What tests did your neuro do to rule out other autoimmune diseases before making the recommendation?
Did your neuro recommend any particular specialty within rheumatology?
Have you seen a rheumatologist yet? If so, where are you in the process?
My neuro has recommended that I see a rheumie. My understanding of this decision is that first, she does not believe that my brain lesions are consistent with MS and secondly, she says that joint pain has been one of my complaints and perhaps the rheumy can come up with an explanation for this pain (which I believe is due to muscle spasms) and give me injections to relieve the pain.
There have been multiple panels of tests done to date which appear to rule out Lupus, Lyme Disease and other tick borne diseases, Sjogrens and tests for rheumatoid factor have all come back negative. The last round of tests included several for vasculitis, which also came back negative.
My neuro did not recommend any particular specialty, just Yale New Haven. I selected a rheumy who listed joint disease and autoimmune disease as areas of interest. After two weeks, I received a letter informing me my appointment is scheduled for 5 months away.
Most rheumie’s within easy commuting distance specialize in arthritis and Lyme Disease.
Would love to learn more from others.
Audrey
Hi audrey i am not waiting for our NHS am going private to see a clinic who specialise in autoimmune and MS. I cant wait now so worried as I dont know how long this stuff has been showing up in my blood......if you get my drift.....So tomorrow making the appointment.
I am mad right now but must calm down ...... for my sake....xxxxx
All your great vibes are keeping me sane. xxxxx
I am mad right now but must calm down ...... for my sake....xxxxx
All your great vibes are keeping me sane. xxxxx
Mrs. A:
I did see your post yesterday.
Karma was the word that popped into my head.
If I read this all correctly, you are going to get the referral you need to a rheumatologist. I certainly hope so and with that comes the proper testing that will lead to a diagnosis for you.
Keep the faith...sometimes that is all we have to hold onto.
Audrey
I did see your post yesterday.
Karma was the word that popped into my head.
If I read this all correctly, you are going to get the referral you need to a rheumatologist. I certainly hope so and with that comes the proper testing that will lead to a diagnosis for you.
Keep the faith...sometimes that is all we have to hold onto.
Audrey
Yes, I was referred to a rheumatologist, and the referral was made by a neurologist.
This actually happened rather suddenly. While undiagnosed, I made the decision to travel to a university medical school in pursuit of answers that my local doctors didn't have. I made the appointment with the neuro long in advance, and I brought along all of my testing up to that time, including MRI films.
The neuro I saw was not able to make a more satisfying assessment than the local doctors I had seen, he told me to keep repeating my MRI (which showed 7-8 lesions, my age at the time was 28), and to "pray it didn't turn into obvious MS." (His words exactly.)
I saw him shortly after a course of oral steroids prescribed by my (worthless, but that's another story) PCP. The treatment seemed successful in the very short term, but in the following weeks I became ridden with aches and pains. I mentioned this to the neuro, and that's when he called his colleague over in rheumatology, and she agreed to see me that day.
Upon examining me, she was very concerned that I was developing RA and/or lupus, neither of which were confirmed. However, I did find it useful to consult her. She ordered much more bloodwork than I ever had (11 vials worth!), and furthermore she informed me that bloodwork changes, and that having negative blood tests was not a reason to stop looking. She was surprised that, given my situation, my PCP was not ordering repeat tests on a regular (ever month or so) basis.
Overall, I thought that the referral was useful in my case, even though it did not directly lead to my diagnosis. However, I was exhibiting some non-neuro symptoms at that time. I suppose if my symptoms were purely and definitively neurological, I would have been more dubious about the referral.
As could be critical for Mrs. A., rheumies are more aware of the range of autoimmune diseases and, at least from my experience, are more broad in testing. So from that point of view, I would think that anyone in limbo would want to consider seeking out a rheumatologist.
Good luck Audrey, and gosh Mrs. M, I don't have any useful advice but I'll send along all the good vibes I can in hopes that you find a doctor who can help you!
This actually happened rather suddenly. While undiagnosed, I made the decision to travel to a university medical school in pursuit of answers that my local doctors didn't have. I made the appointment with the neuro long in advance, and I brought along all of my testing up to that time, including MRI films.
The neuro I saw was not able to make a more satisfying assessment than the local doctors I had seen, he told me to keep repeating my MRI (which showed 7-8 lesions, my age at the time was 28), and to "pray it didn't turn into obvious MS." (His words exactly.)
I saw him shortly after a course of oral steroids prescribed by my (worthless, but that's another story) PCP. The treatment seemed successful in the very short term, but in the following weeks I became ridden with aches and pains. I mentioned this to the neuro, and that's when he called his colleague over in rheumatology, and she agreed to see me that day.
Upon examining me, she was very concerned that I was developing RA and/or lupus, neither of which were confirmed. However, I did find it useful to consult her. She ordered much more bloodwork than I ever had (11 vials worth!), and furthermore she informed me that bloodwork changes, and that having negative blood tests was not a reason to stop looking. She was surprised that, given my situation, my PCP was not ordering repeat tests on a regular (ever month or so) basis.
Overall, I thought that the referral was useful in my case, even though it did not directly lead to my diagnosis. However, I was exhibiting some non-neuro symptoms at that time. I suppose if my symptoms were purely and definitively neurological, I would have been more dubious about the referral.
As could be critical for Mrs. A., rheumies are more aware of the range of autoimmune diseases and, at least from my experience, are more broad in testing. So from that point of view, I would think that anyone in limbo would want to consider seeking out a rheumatologist.
Good luck Audrey, and gosh Mrs. M, I don't have any useful advice but I'll send along all the good vibes I can in hopes that you find a doctor who can help you!
Hi Audrey did you see my post yesterday. It makes me even more mad now........ASMA is only autoimmune and mostly you need to see a reumatologist. Double grrrrrrrrrrrrr.
I expected to see a lot of things in response to my query, but nothing like yours.
As my son would say, this bites the big one. Wish I could jump across the pond and fight for what is right for you.
Darn (didn't want to get censored there) red tape; don't they realize that they are putting the quality of people's lives/health at risk with stuff like this?
The only possible way I see anything changing for you is for your notes to be revised so that "it is not clearly neurological" paving the way for another specialty. Do you know anybody who has knowledge of the system who could advise you and your doctors on how to navigate this?
I am so sorry to hear this from you and can barely imagine your emotions over this.
Wish it were LOL, but its not...still, keep the faith...sometimes that's all we have.
Audrey
As my son would say, this bites the big one. Wish I could jump across the pond and fight for what is right for you.
Darn (didn't want to get censored there) red tape; don't they realize that they are putting the quality of people's lives/health at risk with stuff like this?
The only possible way I see anything changing for you is for your notes to be revised so that "it is not clearly neurological" paving the way for another specialty. Do you know anybody who has knowledge of the system who could advise you and your doctors on how to navigate this?
I am so sorry to hear this from you and can barely imagine your emotions over this.
Wish it were LOL, but its not...still, keep the faith...sometimes that's all we have.
Audrey
OH NO dont get me started on this one lol.
My neurologist wants me to see a reuhmatoglist. It is agreed I have an inflammatory disease....
Because of financial restraints in the UK you have to be referred...........
Well the rheumatologist wont see me as they think it will be wasting my time and their time as they say my notes indicate clearly a neurological disorder.........
So I cant even get off base.
The fact I had a POSITIVE LUPUS test and the fact my father had lupus has got nothing to do with it.
On my notes I had loads of blood tests done but not for Sjorgrens...........
I even tried to complain to our patient liaison office but they said there was nothing they could do.......
So I have swollen hands, swellings in my feet and no chance of being evaluated ........
grrrrrrrrrrrrrrrrrrrrrrrr......and grrrrrrrrrrrrrrrrr some more.
My neurologist wants me to see a reuhmatoglist. It is agreed I have an inflammatory disease....
Because of financial restraints in the UK you have to be referred...........
Well the rheumatologist wont see me as they think it will be wasting my time and their time as they say my notes indicate clearly a neurological disorder.........
So I cant even get off base.
The fact I had a POSITIVE LUPUS test and the fact my father had lupus has got nothing to do with it.
On my notes I had loads of blood tests done but not for Sjorgrens...........
I even tried to complain to our patient liaison office but they said there was nothing they could do.......
So I have swollen hands, swellings in my feet and no chance of being evaluated ........
grrrrrrrrrrrrrrrrrrrrrrrr......and grrrrrrrrrrrrrrrrr some more.
hi audrey,
i have been dealing with symptoms for 22 months and seeing a rheumatologist for just about a year. my neuro-ophthalmologist referred me to her last november after he saw inflammation in the arteries that feed my optic nerves--a.k.a. vasculitis. he said he most often sees this type of inflammation in patients that have lupus, rheumatoid arthritis and other autoimmune diseases. my current rheumie is a sjögren's expert, and treats myriad other autoimmune disorders.
my neuro at the time supported the referral since he was more or less at a loss as to what was going on with me. up to that point, the neuro had run 2 brain MRIs and 2 c-spine MRIs which were negative for lesions, tested me for B12 defiency (normal), vitamin D deficiency (very low--16), parasites & ova, heavy metals, and sent me for a sleep study. he did perform a lumbar puncture on me to check for inflammation and infection, but did not run the MS panel because he was convinced i didn't need it. (don't ask me how many times i have kicked myself in the you-know-what for not making him do that for me.) there was no inflammation or infection present in my spinal fluid.
after seeing the rheumie for the first time, i had 17 vials of blood drawn. i can't remember all the tests she ordered, but everything came back normal much to my dismay. included in that was ELISA testing for lyme which was negative for antibodies.
she initially thought i had neuro-presentation of autoimmune hypothyroidism since my thyroid felt full. i had an ultrasound which revealed two small cysts and some homogeneity of the thyroid tissue, but my thyroid blood work didn't support hypothyroidism. she then ran a battery of cellular immune function blood tests which also came back normal.
next, she sent me to a sjögren's study at our local research university where they did a lip biopsy, ran another zillion blood tests and measured my saliva and tear production. the lip biopsy revealed an inflammatory condition called chronic sclerosing sialadenitis which can be related, but not truly diagnostic for sjögren's, i had normal tear and saliva production, and my bloodwork was normal except for low complement c4, so i only received a "possible sjögren's" diagnosis. even so, she prescribed 400mg of plaquenil which i am still taking. it seems to have helped a little bit with my fatigue.
sorry that is all so long-winded, but there's a snapshot of my neuro-optho/neuro/rheumie experience for you.
as far as your referral is concerned, 5 months seems to be an awfully long time to have to wait to see a rheumatologist. does your insurance cover second opinions? maybe you could ask your neuro to refer you to someone else who might get you in sooner, but you could keep your yale appointment as a backup/second opinion in the event you don't get any resolution from the first one??
just my $.02 on how to navigate around all the delays. which leads me to my next task--replying to your post on patience.
blessings to you,
binx
i have been dealing with symptoms for 22 months and seeing a rheumatologist for just about a year. my neuro-ophthalmologist referred me to her last november after he saw inflammation in the arteries that feed my optic nerves--a.k.a. vasculitis. he said he most often sees this type of inflammation in patients that have lupus, rheumatoid arthritis and other autoimmune diseases. my current rheumie is a sjögren's expert, and treats myriad other autoimmune disorders.
my neuro at the time supported the referral since he was more or less at a loss as to what was going on with me. up to that point, the neuro had run 2 brain MRIs and 2 c-spine MRIs which were negative for lesions, tested me for B12 defiency (normal), vitamin D deficiency (very low--16), parasites & ova, heavy metals, and sent me for a sleep study. he did perform a lumbar puncture on me to check for inflammation and infection, but did not run the MS panel because he was convinced i didn't need it. (don't ask me how many times i have kicked myself in the you-know-what for not making him do that for me.) there was no inflammation or infection present in my spinal fluid.
after seeing the rheumie for the first time, i had 17 vials of blood drawn. i can't remember all the tests she ordered, but everything came back normal much to my dismay. included in that was ELISA testing for lyme which was negative for antibodies.
she initially thought i had neuro-presentation of autoimmune hypothyroidism since my thyroid felt full. i had an ultrasound which revealed two small cysts and some homogeneity of the thyroid tissue, but my thyroid blood work didn't support hypothyroidism. she then ran a battery of cellular immune function blood tests which also came back normal.
next, she sent me to a sjögren's study at our local research university where they did a lip biopsy, ran another zillion blood tests and measured my saliva and tear production. the lip biopsy revealed an inflammatory condition called chronic sclerosing sialadenitis which can be related, but not truly diagnostic for sjögren's, i had normal tear and saliva production, and my bloodwork was normal except for low complement c4, so i only received a "possible sjögren's" diagnosis. even so, she prescribed 400mg of plaquenil which i am still taking. it seems to have helped a little bit with my fatigue.
sorry that is all so long-winded, but there's a snapshot of my neuro-optho/neuro/rheumie experience for you.
as far as your referral is concerned, 5 months seems to be an awfully long time to have to wait to see a rheumatologist. does your insurance cover second opinions? maybe you could ask your neuro to refer you to someone else who might get you in sooner, but you could keep your yale appointment as a backup/second opinion in the event you don't get any resolution from the first one??
just my $.02 on how to navigate around all the delays. which leads me to my next task--replying to your post on patience.
blessings to you,
binx
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