Aa
saw new Rheumy; any ideas about bloodwork results?
I'll just list the ones that are out of range:
C-Reactive Protein 3.4
Sed. rate 38
Platelet count 425 (range 150-400 K/cu mm)
Neutrophil % 79 (range 40-70%)
Lymphocyte% 17 (range 18-42%)
Neutrophil# 8.4 (range 1.8-7.7 K/cu mm)
I went in looking at Sjogren's on the advice of a neuro-ophthalmologist, but the rheumatologist doesn't think I have it. He also ordered ANA, ENA, and Hep C, but those results aren't back yet. My TSH was 1.3
In the past my ANA has been 1:40, considered so weakly positive that it was ignored. The pattern was homogenous and speckled.
I'm on my third neurologist, after over a year of tremors, dizziness/vertigo, loss of balance, blurred vision, extreme fatigue, parasthesia, nerve pain in right forearm, bladder frequency, urgency, leakage, and a few episodes of loss of control of bladder; bladder spasms, occasional memory issues, like trouble finding words, or losing track of what I was saying in the middle of a sentence.
Ooops, you don't need to know my whole history! :o)
I would appreciate it if anyone has any idea what any of the above test results might point to.
Thank you,
Kathy
C-Reactive Protein 3.4
Sed. rate 38
Platelet count 425 (range 150-400 K/cu mm)
Neutrophil % 79 (range 40-70%)
Lymphocyte% 17 (range 18-42%)
Neutrophil# 8.4 (range 1.8-7.7 K/cu mm)
I went in looking at Sjogren's on the advice of a neuro-ophthalmologist, but the rheumatologist doesn't think I have it. He also ordered ANA, ENA, and Hep C, but those results aren't back yet. My TSH was 1.3
In the past my ANA has been 1:40, considered so weakly positive that it was ignored. The pattern was homogenous and speckled.
I'm on my third neurologist, after over a year of tremors, dizziness/vertigo, loss of balance, blurred vision, extreme fatigue, parasthesia, nerve pain in right forearm, bladder frequency, urgency, leakage, and a few episodes of loss of control of bladder; bladder spasms, occasional memory issues, like trouble finding words, or losing track of what I was saying in the middle of a sentence.
Ooops, you don't need to know my whole history! :o)
I would appreciate it if anyone has any idea what any of the above test results might point to.
Thank you,
Kathy
Hi,
When my MS specialist called to discuss my MRI results, she just told me that everything was essentially unchanged and I should be happy with that. I asked questions (intelligent ones), she got upset, told me I could take my MRIs elsewhere for a second opinion (already had it set up), and was very flustered and rude.
The second opinion reading of my MRIs was done as a favor to my PCP, and she called all excited, telling me that it was clear that I didn't have any vascular disease, small vessel or otherwise, that it was clearly an atypical presentation of MS. We'll see what my new MS specialist says about that.
I was discharged as a patient, and have been accepted as a patient at another MS Center, though my appt. isn't until Sept. 16. I was accepted as a patient after he reviewed my MRIs, so they must show something interesting to him!
I see my oto-neurologist for a follow-up after hours of audiology and vestibular testing. Most everything is great, but it says that some findings support "diffuse cochlear disease in both ears", even though my hearing is very good.
My dizziness improved for a while, then got much worse after a trip to Florida; actually after a two hour walk through the surf looking for shells...
I see my rheumy July 6, to see what he makes of my abnormal test results and spinal MRIs. I'll take a copy of the picture I took of a rash on my arm in December, since it showed up again in the same area at the beginning of June.
I'm too tired to make much sense, but felt like connecting with you all, so thanks for listening.
Kathy
When my MS specialist called to discuss my MRI results, she just told me that everything was essentially unchanged and I should be happy with that. I asked questions (intelligent ones), she got upset, told me I could take my MRIs elsewhere for a second opinion (already had it set up), and was very flustered and rude.
The second opinion reading of my MRIs was done as a favor to my PCP, and she called all excited, telling me that it was clear that I didn't have any vascular disease, small vessel or otherwise, that it was clearly an atypical presentation of MS. We'll see what my new MS specialist says about that.
I was discharged as a patient, and have been accepted as a patient at another MS Center, though my appt. isn't until Sept. 16. I was accepted as a patient after he reviewed my MRIs, so they must show something interesting to him!
I see my oto-neurologist for a follow-up after hours of audiology and vestibular testing. Most everything is great, but it says that some findings support "diffuse cochlear disease in both ears", even though my hearing is very good.
My dizziness improved for a while, then got much worse after a trip to Florida; actually after a two hour walk through the surf looking for shells...
I see my rheumy July 6, to see what he makes of my abnormal test results and spinal MRIs. I'll take a copy of the picture I took of a rash on my arm in December, since it showed up again in the same area at the beginning of June.
I'm too tired to make much sense, but felt like connecting with you all, so thanks for listening.
Kathy
Hello, I'm back!
I've been juggling doctor's appointments, MRIs, vestibular physical therapy, fighting for my rights, etc.
My cardiologist faxed a report to my neuro the day of my appointment with her, debunking her theory about SVID. We had a heated discussion about how stuck I had felt behind that possible diagnosis, with her going on the defensive and saying I could find a neurologist outside of OHSU. I told her that I'd prefer to switch to the neurologist that I'd originally requested to see.
We got things calmed down, and she ordered 3T MRIs of my brain, c and t spine, as well as referring me to an oto-neurologist and vestibular physical therapist for my vertigo/dizziness. I agreed to follow up with her.
The 3T MR films are amazing. The reports I picked up were not. The neuros orders read something like " History of white matter spots follow-up, rule out demylenation versus small vessel ischemic".
The brain MRI report was atrocious; the radiologist had missed several sequences, made errors in stuff like where the MR that she compared it to was done, said IV contrast was not administered, when I still have the bruise from the IV and have reviewed the films myself and saw the post-csntrast films.
Her IMPRESSION:
No gross interval change in appearance of cerebral white matter T2 hyperintensities. No T1-weighted images and no contrast-enhanced images are submitted.
The differential is unchanged and includes demyelination and small vessel ischemia. The distribution is somewhat atypical for multiple sclerosis but could include lupus and other autoimmune phenomena.
Her report was reviewed and finalized, as having no mistakes. That's it; the whole report would have fit on one page if it wasn't on university letter-head.
ARRRGGGHHHH! I had requested that they follow the MS protocol for reporting, including lesion number, location, size, shape, character, and a qualitative assessment of brain atrophy, which they did not do.
My brain and spine MRIs were done together, with administration of contrast being done after the brain and spinal regular films, then repeated scans back up my body. Since the brain and spine were read by different radiologists, the one that read my brain must have taken five minutes and not noticed that there were 12 different series of my brain, including the T1 and the post-contrast.
I asked for someone in charge, and got help from a real pistol of a woman! She printed out the un-finalized reports of my spine, on which I was able to immediately note mistakes; the first being that it said it was done on a 1.5 T machine using routine OHSU MRI protocol. I had been assured several times that it was done under MS protocol.
I got my chart notes from my last visit with my neuro, and it is clear that she will not be able to work with me. I won't go into it, I've ranted enough.
I'm looking at changing neurologists, having the MRI reports addended,getting a second opinion read of my 3T MRIs by the neuro-radiologist that read my first two brain MRIs, and wrote to my rheumatologist suggesting that he have a look at my new MRIs before our follow-up appointment on May 18.
An interesting thing about the spinal reports is that they state that I have linear multi-segment T2 hyperintense lesions in both my C and T spine.
A friend on the MS forum suggested that such lesions are commonly found with NMO/Devic's, PPMS, lupus, and probably other auto-immune disorders.
So another chapter opens in my epic search for answers!
My MS neuro is supposed to call today with her explanation of my MRI results.
I'm hoping that my PCP will call today, saying that the neuro-radiologist will look at my new MRIs.
I'm hoping that the MS clinic will call with information about how I change from my neuro to one that is more able to work with me. I am a partner in my health care.
My vestibular PT is awesome; she saw that I have nystagmus right away when she started testing me. An opthalmologist, neuro-opthalmologist, and three neurologists have missed that.
Or ignored it. After being told that's what's going on, I recognize the feeling of my eyes skipping, and it happened at my last neuro appointment. Oops, small rant, there, lol, sorry!
I see the oto-neurologist next month, and hope to have a comprehensive MRI report for him before then.
I wish I could still do water aerobics; the fatigue and vertigo kind of put an end to that. I keep meaning to go back now that I have Provigil (when i can afford it), but haven't made it yet. The vertigo makes me feel woozy in the water.
I took a week's trip to North Carolina, and next month I'm spending a week in Orlando. I have a roommate that travels for business and I'm able to go along, share her room, usually get a free flight with frequent flyer points. I get to explore new places while she works, then we can run around after she's done.
So, who knows what's next. Life goes on!
I hope all is well with you; thanks again for all the information.
Kathy
I've been juggling doctor's appointments, MRIs, vestibular physical therapy, fighting for my rights, etc.
My cardiologist faxed a report to my neuro the day of my appointment with her, debunking her theory about SVID. We had a heated discussion about how stuck I had felt behind that possible diagnosis, with her going on the defensive and saying I could find a neurologist outside of OHSU. I told her that I'd prefer to switch to the neurologist that I'd originally requested to see.
We got things calmed down, and she ordered 3T MRIs of my brain, c and t spine, as well as referring me to an oto-neurologist and vestibular physical therapist for my vertigo/dizziness. I agreed to follow up with her.
The 3T MR films are amazing. The reports I picked up were not. The neuros orders read something like " History of white matter spots follow-up, rule out demylenation versus small vessel ischemic".
The brain MRI report was atrocious; the radiologist had missed several sequences, made errors in stuff like where the MR that she compared it to was done, said IV contrast was not administered, when I still have the bruise from the IV and have reviewed the films myself and saw the post-csntrast films.
Her IMPRESSION:
No gross interval change in appearance of cerebral white matter T2 hyperintensities. No T1-weighted images and no contrast-enhanced images are submitted.
The differential is unchanged and includes demyelination and small vessel ischemia. The distribution is somewhat atypical for multiple sclerosis but could include lupus and other autoimmune phenomena.
Her report was reviewed and finalized, as having no mistakes. That's it; the whole report would have fit on one page if it wasn't on university letter-head.
ARRRGGGHHHH! I had requested that they follow the MS protocol for reporting, including lesion number, location, size, shape, character, and a qualitative assessment of brain atrophy, which they did not do.
My brain and spine MRIs were done together, with administration of contrast being done after the brain and spinal regular films, then repeated scans back up my body. Since the brain and spine were read by different radiologists, the one that read my brain must have taken five minutes and not noticed that there were 12 different series of my brain, including the T1 and the post-contrast.
I asked for someone in charge, and got help from a real pistol of a woman! She printed out the un-finalized reports of my spine, on which I was able to immediately note mistakes; the first being that it said it was done on a 1.5 T machine using routine OHSU MRI protocol. I had been assured several times that it was done under MS protocol.
I got my chart notes from my last visit with my neuro, and it is clear that she will not be able to work with me. I won't go into it, I've ranted enough.
I'm looking at changing neurologists, having the MRI reports addended,getting a second opinion read of my 3T MRIs by the neuro-radiologist that read my first two brain MRIs, and wrote to my rheumatologist suggesting that he have a look at my new MRIs before our follow-up appointment on May 18.
An interesting thing about the spinal reports is that they state that I have linear multi-segment T2 hyperintense lesions in both my C and T spine.
A friend on the MS forum suggested that such lesions are commonly found with NMO/Devic's, PPMS, lupus, and probably other auto-immune disorders.
So another chapter opens in my epic search for answers!
My MS neuro is supposed to call today with her explanation of my MRI results.
I'm hoping that my PCP will call today, saying that the neuro-radiologist will look at my new MRIs.
I'm hoping that the MS clinic will call with information about how I change from my neuro to one that is more able to work with me. I am a partner in my health care.
My vestibular PT is awesome; she saw that I have nystagmus right away when she started testing me. An opthalmologist, neuro-opthalmologist, and three neurologists have missed that.
Or ignored it. After being told that's what's going on, I recognize the feeling of my eyes skipping, and it happened at my last neuro appointment. Oops, small rant, there, lol, sorry!
I see the oto-neurologist next month, and hope to have a comprehensive MRI report for him before then.
I wish I could still do water aerobics; the fatigue and vertigo kind of put an end to that. I keep meaning to go back now that I have Provigil (when i can afford it), but haven't made it yet. The vertigo makes me feel woozy in the water.
I took a week's trip to North Carolina, and next month I'm spending a week in Orlando. I have a roommate that travels for business and I'm able to go along, share her room, usually get a free flight with frequent flyer points. I get to explore new places while she works, then we can run around after she's done.
So, who knows what's next. Life goes on!
I hope all is well with you; thanks again for all the information.
Kathy
Hi Kathy,
You're right... your case doesn't fit the CFS criteria. One thing that I've learned from CFS experts and MedHelp members is many people who have these "autoimmune" diseases, tend to have high viral markers and/or bacterial infections. So in your quest for searching for answers, it may be helpful to talk to your physician about the possibility of a successive infection. I know I have CFS and the last few years, my ANA began to become positive and the last time I had it checked, it was 1:640 (speckled). At the time, I began to have some lupus like symptoms. The interesting thing is... those symptoms slowly started to disappear after I started treatment for my bacterial infection ! One theory as to why people with CFS begin to have autoimmune problems (25% of us anyway), is this:
"When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response. Our recently published studies demonstrated a possible link between mycoplasmal infections and CFS and FMS, since we found high frequencies of mycoplasmal infections in these patients."
Garth Nicolson, Ph.D.
http://www.immed.org/illness/fatigue_illness_research.html
So in your search for answers, you may want to consider getting tested for viruses and/or various bacterial infections. Unfortunately, the mycoplasma testing necessary is not done through regular labs (there is always a catch, isn't there ? ; ^ ) ), but here is the link if you would like more information. Prof. Nicolson also has his research studies on his website about mycoplasma and other various infections found in people who have autoimmune diseases.
http://www.immed.org/illness/clinical_testing.html
Another suggestion is contacting the new Whittemore Peterson Institute. They are researching what they refer to as "atypical MS". They also are researching CFS, fibro, autism and these other puzzling illnesses that are impacting the lives of millions of people. This new institute, has already come up with a blood test that apparently can diagnose CFS. I think this test will be available in a year (not sure if FDA approved yet or not by then... we shall see). Here is more information:
http://www.medhelp.org/user_journals/show/40120?personal_page_id=1064
I do know how terrible it is to be ill and not have a diagnosis. But I am happy to hear that the water aerobics and PT seems to be helping you with some of your symptoms !
You're right... your case doesn't fit the CFS criteria. One thing that I've learned from CFS experts and MedHelp members is many people who have these "autoimmune" diseases, tend to have high viral markers and/or bacterial infections. So in your quest for searching for answers, it may be helpful to talk to your physician about the possibility of a successive infection. I know I have CFS and the last few years, my ANA began to become positive and the last time I had it checked, it was 1:640 (speckled). At the time, I began to have some lupus like symptoms. The interesting thing is... those symptoms slowly started to disappear after I started treatment for my bacterial infection ! One theory as to why people with CFS begin to have autoimmune problems (25% of us anyway), is this:
"When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response. Our recently published studies demonstrated a possible link between mycoplasmal infections and CFS and FMS, since we found high frequencies of mycoplasmal infections in these patients."
Garth Nicolson, Ph.D.
http://www.immed.org/illness/fatigue_illness_research.html
So in your search for answers, you may want to consider getting tested for viruses and/or various bacterial infections. Unfortunately, the mycoplasma testing necessary is not done through regular labs (there is always a catch, isn't there ? ; ^ ) ), but here is the link if you would like more information. Prof. Nicolson also has his research studies on his website about mycoplasma and other various infections found in people who have autoimmune diseases.
http://www.immed.org/illness/clinical_testing.html
Another suggestion is contacting the new Whittemore Peterson Institute. They are researching what they refer to as "atypical MS". They also are researching CFS, fibro, autism and these other puzzling illnesses that are impacting the lives of millions of people. This new institute, has already come up with a blood test that apparently can diagnose CFS. I think this test will be available in a year (not sure if FDA approved yet or not by then... we shall see). Here is more information:
http://www.medhelp.org/user_journals/show/40120?personal_page_id=1064
I do know how terrible it is to be ill and not have a diagnosis. But I am happy to hear that the water aerobics and PT seems to be helping you with some of your symptoms !
Hi there!
One of the first diagnoses I got was CFS, but not through ruling anything out. That was years ago, and after a while my diagnosis was changed to fibromyalgia. Then they added Interstitial Cystitis. Arthritis.
I have had so many things go wrong with my body, it confuses all the neurologists, rheumatologists, and other specialists I've seen; some hint at somatization, this latest rheumy asked me if I had heard of Chronic Pain Syndrome.
I told him that as I had been dealing with chronic pain for many years, there wasn't a lot that I didn't know about it. I know the Chronic Pain Syndrome is mostly a psychiatric diagnosis. It blows me away, with all the MRIs, Op reports, and everything, he would suggest such a thing.
Besides, I didn't go to him regarding pain; I went to him to rule out Sjogren's Syndrome and other auto-immune disorders. After a year of new overwhelming symptoms, it was very frustrating to hear, though I laughed when he said it.
I'm very grateful for your interest and concern. If you would like to learn more about me, you can check my journals; there is a Timeline of Symptoms in there that attempts to explain what I've been going through.
Both my ESR and CRP have been noted to be somewhat elevated a few times in the records that I have.
At one point I had pictures of my brain MRI posted, but I posted so many pictures of my trip to Maui that I don't know if any of the brain pictures are still there.
Next on my agenda is to see a cardiologist on Monday to get his opinion as to whether my brain lesions and symptoms could be from small vessel ischemic disease, which is what my neuros have decided on, although I don't have any predisposing factors.
A friend on the MS forum suggested an inherited form of SVID, so I need to discuss that with my cardiologist. I expected him to clear that diagnosis before I heard about the genetic SVID.
Hopefully, he still will. Stuff like CADASIL is scary, leads to strokes, dementia, etc. My mom went that way, but she had high blood pressure, high cholesterol, was sedentary, obese, depressed. I have worked very hard to not go down that road; it would be a real bummer if I still did because of a gene I inherited.
Maybe, just maybe, I'll head back to my MS specialist with mimics ruled out, SVID ruled out, and have her actually consider that she needs to look at what is really going on with me.
Oh, regarding CFS; the reason I don't think that fits me is because I was able to go from a morbidly obese lump of pain to someone who enjoyed walking and then working out daily, lost 100+ pounds, all because of a pain specialist that figured out what some old injuries had done to my body.
He sent me to an awesome physical therapist, who had me start with tiny steps, contracting ab muscles, slowly improving strength, range of motion, etc. Before long I was walking to the gym, warming up on the elliptical for 30 minutes or so, making a circuit of a few weight machines and some hand weights and then doing stretches and core strengthening work.
It was great to drop all that weight; I was a new me. My knees, shoulders, and SI joints started giving me problems, and I reduced my activity to walking, treadmill, and light weights.
Finally, I found water aerobis, and spent about 4 years happy as a clam at high tide! I was able to work out fairly hard, and felt my strength and stamina returning. I would find water aerobics classes on vacations or business trips.
I herniated a lumbar disc, but kept going to the pool as often as I could. I tried epidurals; didn't help.
Then Feb. 6 '08 I woke up with tremors and fatigue, and have gained more symptoms that have totally interfered with my life. I've been searching for answers since, and going to physical therapy to try to build strength and balance, but am not having much luck.
I've gained weight. I have plans, to travel, and wonder if I'll have the get-up-and-go to, well, get up and go. I have some Provigil, which helps, but since I don't have a diagnosis, my insurance won't cover it.
Ritalin doesn't like me; the feeling is mutual.
This was supposed to be a short note! You're a good listener, er, reader. I feel comfortable writing to you.
I'll come visit your forum when I get a chance, OK? I have to deal with a computer worm, go pay my rent, pick up some groceries, etc. Yes, it's a whole Provigil day (days when I don't have as much to do I cut them in half).
Thanks for listening.
Kathy
One of the first diagnoses I got was CFS, but not through ruling anything out. That was years ago, and after a while my diagnosis was changed to fibromyalgia. Then they added Interstitial Cystitis. Arthritis.
I have had so many things go wrong with my body, it confuses all the neurologists, rheumatologists, and other specialists I've seen; some hint at somatization, this latest rheumy asked me if I had heard of Chronic Pain Syndrome.
I told him that as I had been dealing with chronic pain for many years, there wasn't a lot that I didn't know about it. I know the Chronic Pain Syndrome is mostly a psychiatric diagnosis. It blows me away, with all the MRIs, Op reports, and everything, he would suggest such a thing.
Besides, I didn't go to him regarding pain; I went to him to rule out Sjogren's Syndrome and other auto-immune disorders. After a year of new overwhelming symptoms, it was very frustrating to hear, though I laughed when he said it.
I'm very grateful for your interest and concern. If you would like to learn more about me, you can check my journals; there is a Timeline of Symptoms in there that attempts to explain what I've been going through.
Both my ESR and CRP have been noted to be somewhat elevated a few times in the records that I have.
At one point I had pictures of my brain MRI posted, but I posted so many pictures of my trip to Maui that I don't know if any of the brain pictures are still there.
Next on my agenda is to see a cardiologist on Monday to get his opinion as to whether my brain lesions and symptoms could be from small vessel ischemic disease, which is what my neuros have decided on, although I don't have any predisposing factors.
A friend on the MS forum suggested an inherited form of SVID, so I need to discuss that with my cardiologist. I expected him to clear that diagnosis before I heard about the genetic SVID.
Hopefully, he still will. Stuff like CADASIL is scary, leads to strokes, dementia, etc. My mom went that way, but she had high blood pressure, high cholesterol, was sedentary, obese, depressed. I have worked very hard to not go down that road; it would be a real bummer if I still did because of a gene I inherited.
Maybe, just maybe, I'll head back to my MS specialist with mimics ruled out, SVID ruled out, and have her actually consider that she needs to look at what is really going on with me.
Oh, regarding CFS; the reason I don't think that fits me is because I was able to go from a morbidly obese lump of pain to someone who enjoyed walking and then working out daily, lost 100+ pounds, all because of a pain specialist that figured out what some old injuries had done to my body.
He sent me to an awesome physical therapist, who had me start with tiny steps, contracting ab muscles, slowly improving strength, range of motion, etc. Before long I was walking to the gym, warming up on the elliptical for 30 minutes or so, making a circuit of a few weight machines and some hand weights and then doing stretches and core strengthening work.
It was great to drop all that weight; I was a new me. My knees, shoulders, and SI joints started giving me problems, and I reduced my activity to walking, treadmill, and light weights.
Finally, I found water aerobis, and spent about 4 years happy as a clam at high tide! I was able to work out fairly hard, and felt my strength and stamina returning. I would find water aerobics classes on vacations or business trips.
I herniated a lumbar disc, but kept going to the pool as often as I could. I tried epidurals; didn't help.
Then Feb. 6 '08 I woke up with tremors and fatigue, and have gained more symptoms that have totally interfered with my life. I've been searching for answers since, and going to physical therapy to try to build strength and balance, but am not having much luck.
I've gained weight. I have plans, to travel, and wonder if I'll have the get-up-and-go to, well, get up and go. I have some Provigil, which helps, but since I don't have a diagnosis, my insurance won't cover it.
Ritalin doesn't like me; the feeling is mutual.
This was supposed to be a short note! You're a good listener, er, reader. I feel comfortable writing to you.
I'll come visit your forum when I get a chance, OK? I have to deal with a computer worm, go pay my rent, pick up some groceries, etc. Yes, it's a whole Provigil day (days when I don't have as much to do I cut them in half).
Thanks for listening.
Kathy
Hello! Thanks for all the information. I'll have to come back after my physical therapy appointment and check it out in depth. I didn't have computer accesss yesterday, so I need to catch up!
When I had my LP, I had the above mentioned Western Blot test done; negative.
I'll get back to you after I've checked out the rest of your information. I really appreciate it, thanks again.
Kathy
When I had my LP, I had the above mentioned Western Blot test done; negative.
I'll get back to you after I've checked out the rest of your information. I really appreciate it, thanks again.
Kathy
Hi, thanks for your input!
The above results were from a visit to a new rheumatologist. He also did a DS DNA, which came back negative a 1:10.
This is the third time I've had my ANA tested in the past year, and they all came back 1:40, though the latest results showed a homogenous pattern instead of homogenous and speckled. It's just really not positive.
Thanks again, be well,
Kathy
The above results were from a visit to a new rheumatologist. He also did a DS DNA, which came back negative a 1:10.
This is the third time I've had my ANA tested in the past year, and they all came back 1:40, though the latest results showed a homogenous pattern instead of homogenous and speckled. It's just really not positive.
Thanks again, be well,
Kathy
P.S. ~ I thought I would add that normally CFS patients have a very low sed rate (you might want to check your previous results).... but you can have an elevated sed rate and/or C-Reative Protein if you have secondary adrenal insufficiency and/or an overlapping autoimmune condition. You might want to ask your physician to check your A.M. cortisol level.
Hi Kathy,
I'm reading your symptoms and it sounds like either MS or CFS (AKA: Myalgic Encephalomyelitis). 25% of patients who have CFS have a positive ANA titer... usually low.
All of your symptoms could be due to either MS or CFS, even the bladder problems. Also, have you been checked for lyme disease ? Testing is often unreliable, but there is a preferred test. Insurance may or may not cover the testing:
Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/).
http://www.immed.org/illness/clinical_testing.html
____________________________________________________________________
In CFS patients:
"Bladder and bowel control may be insecure."
source: INFORMATION FOR CLINICIANS AND LAWYERS, December 2001
E.P. Marshall (1) M. Williams (1) M. Hooper (2)
____________________________________________________________________
MedHelp discussion and article (M.E. (CFS) vs. MS):
http://www.medhelp.org/posts/show/760781?personal_page_id=25453
I hope this information helps. If you have low blood pressure, frequent thirst, increased malaise (fatigue and sickness) following exertion, unrefreshing sleep, muscle aches and intolerance to exercise..... consider a CFS diagnosis. Feel free to send me a PM if you have any other questions and/or check out MedHelp's fibro/CFS forum (VaBreeze & I are the CL's there).
I'm reading your symptoms and it sounds like either MS or CFS (AKA: Myalgic Encephalomyelitis). 25% of patients who have CFS have a positive ANA titer... usually low.
All of your symptoms could be due to either MS or CFS, even the bladder problems. Also, have you been checked for lyme disease ? Testing is often unreliable, but there is a preferred test. Insurance may or may not cover the testing:
Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/).
http://www.immed.org/illness/clinical_testing.html
____________________________________________________________________
In CFS patients:
"Bladder and bowel control may be insecure."
source: INFORMATION FOR CLINICIANS AND LAWYERS, December 2001
E.P. Marshall (1) M. Williams (1) M. Hooper (2)
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MedHelp discussion and article (M.E. (CFS) vs. MS):
http://www.medhelp.org/posts/show/760781?personal_page_id=25453
I hope this information helps. If you have low blood pressure, frequent thirst, increased malaise (fatigue and sickness) following exertion, unrefreshing sleep, muscle aches and intolerance to exercise..... consider a CFS diagnosis. Feel free to send me a PM if you have any other questions and/or check out MedHelp's fibro/CFS forum (VaBreeze & I are the CL's there).
You need to see a rheumatologist and have your ANA rechecked. Lupus can change dramatically in a relatively short period of time. Ask that a double stranded DNA and ANA panel be done, those are much more definitive. Your sed rate definitely indicates active inflamation. From one lupus patient to another, it sounds like you may have a luus flare. Good luck!
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