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Old 07-27-2007, 11:50 AM   #1
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Join Date: Jul 2007
Location: Ashland, OH USA
Posts: 10
beachbum22 HB User
Question Hi, I am new to the forum. Need some advice please!!!

My name is Cindi. I have been having health problems for about 11 years. I would like some input from someone with experience with Lupus. I have copied and pasted a timeline, to help clarify things a bit. I know it is long, but I have been sick for a long time. They thought I had MS, but now they are thinking it may be something else. They want to rule out lupus, but unfortunately, I meet 4 of the 11 criteria for Dx. I am also including some recent lab results. Help Please!!!!!!....................

Sorry the formatting is all messed up.

Symptom Timeline

1974
Age 10-13 Severe Migraines w/ vomiting
Suffered from depression
1981
Age 17 Gave birth to first child-only problems were severe nausea

Age 16-18 Hives when cold all over my body, usually cleared up w/in 12 hours or so.
Clumsy- always hurting myself and knocking things over. My nickname was Grace.

1982
Age 18 Developed severe psoraisis- covered 70% of my body w/ no prior history
Developed fatigue, needed naps daily

Age 18-28 During this ten year period, my biggest problem was fatigue. My days revolved around napping.
Nothing that I can think of that was significant.
1992
Age 28 During the pregnancy with my youngest child, had some premature labor and severe bleeding from the placenta
Placed on bedrest for weeks at a time, as this occured twice, through out the pregnancy.
Delivery difficult. Labor not effecting cervix. (Not dialating)
Severe shoulder pain. Could not dress self, sleep.
Dx. Bursitis Shoulder. Still have pain. 2007


Age 29 Pregnant again. Ended in miscarriage at 20 weeks. Severe hemorrhaging. Transfusion recommended but refused.
Suffered with extreme depression. Muscle weakness and extreme fatigue.

Age 30 Move from MD to Ohio.

Age 31 Pregnant again, this pregnancy also ended in miscarriage at 20 weeks.
During these last years that I spent pregnant, it is hard to discern, what was preg related and not.
1996
Age 31 Tubal ligation. Approx. 1 month after is when the diplopia began along with other vision problems.
Evaluated at the local ER, Pso Romberg test and questionable neuro examination. Subtle past pointing, finger to nose.
Recommended MRI, which was scheduled at the Cleveland Clinic-Mellen Center for MS. MRI showed several small lesions.
Dx. possible MS, due to MRI and brain stem involvement/ Sx. Amantadine RX for fatigue


1997 Severe pain in hip for several days. Could not bare weight or move around well.
Dx. Arthritis in hip. Abnormality noted. Bone scan performed. Negative. Rx'd PT, but moved to another area, too far away.
Never followed up after pain subsided. Have had ongoing problems with hip. Still experience severe pain. 2007



1998
Age 33 This is a guess at time. I had a negative LP. But experienced different symptoms lasting more than 24 hours Tremors, incontinence problems, fatigue
Ongoing visual problems-reoccuring diplopia
DX. Probable MS

Age 33 Seen in ER for severe constipation. Sonogram performed Colon totally full of feces. Suffered severe bloating. Looked Pregnant. Fatigue continued.

2001
Age 36 Move to Florida- suffered with heat related weakness and fatigue. Some hip pain during this time.

2002
Age 37 Returned to Ohio, for birth of grandchild. Only symptoms, extreme fatigue

Age 39 Started Amantadine for fatigue again. DC'd due to financial burdens. Extreme weakness after day at the zoo. Could barely walk for several days.

Age 40 Started experiencing migraines and constant headaches. Fatigue seemed to worsen. Fell at work and bruised elbow.
Developed psoraisis on soles of feet and palms of hands. Quit job as server. Served for several years. Eye exam vision worsening.Prisms in glasses.

Age 40 Took classes at JVS for Med Asst and Coding. Was sick constantly. Resiratory symptoms. Developed seasonal allergies.
Attended school for 5 months. Received certificate and went on to obtain certification as a coder.
Arms went numb while washing dishes. Could not control my arms. Follow up w/ PCP and no abnormalities found. Scheduled neuro appt.


2007- Jan
Age 42 Obtained Job as a customer service representative with the Cleveland Clinic. This is when I began experiencing the incontinence problems, leg weakness-
could not walk from my car to the office. My hearing began to deteriorate and my vision as well. Also, in the last several months, I have had dizziness. I cannot go down the steps without hanging on to something. I become very woozy and disoriented.

Age 42 Started again with respiratory problems- Bronchitis w/ spasms- Dizziness also occuring, very unsteady going down stairs= March 2007

April 07 Dx'd with moderate bilateral high frequency hearing loss- sensoroneural in nature. Audiogram and bone induction tests performed. Tinnitus. 2 Hearing aids needed.

May 07 Developed hoarseness. I am still having issues with this. Saw Family Dr. Voice rest and hydration.

May 07 Saw ENT Dx Laryngitis-voice rest hydration- for hoarseness

June 07 Follow up still experiencing hoarseness- Speech therapy referral.

July 07 ST- therapist says she cannot explain horseness. Breathing is good, posture etc. Given exercises to do at home. Still intermittent hoarseness, Aggravated by stress.

July 07 Began suddenly to have severely distorted vision and the peripheral vision on my right side was white. Called Opthamologist.
Wanted to see me right away. There is increased pressure in eyes. Macular Degeneration and some nerve involvment in both eyes.
Nothing done, I am to follow up in October 07


July 07 7-16-07- Urodynamic Study and cystoscopy performed. Doctor Vassavada recommended Sling Procedure for Stress Incontinence
I have stress and urge incontinence.Dx. 7/16/07 The bladder fills and I have no warning until it starts to empty. The Dr. said according to the study, bladder is spasming, when it reaches a specific fullness. Rx. Detrol. Insurance has not approved yet.


July 07 Phoned Neuro, they recommended VEP/ Aug 2, 2007


Present I am having great difficulty with my short term memory. I cannot remember alot of things and am constantly overdrawing our checking account. I can' tr remember the name of a movie that I have been watching, I am not reading the fuel gauge on my vehicle correctly, things like that!!! This is worsening as well. Has been going on for several months

Past and ongoing I have always had problems with the heat. It exacerbates existing problems and causes great fatigue. Thinking back, it always has, even since I was young!!!!






This is a best guess at dates and times. As it has been a long stretch of time.

I will list only abnormal results. I am waiting for results from Rheumatologist appointment. ANA, ESR,Liver Panel, Lyme, Etc. Alot of Etc.!!!


REFERENCE RANGE
Hemoglobin 10.8 L 12.0-16.0
Hematocrit 31.8 L 36-48
MCV 72.2 L 78-100
MCH 24.4 L 27-31
RDW 17.4 H 33.0-37.0
MPV 6.0 L 7.4-11.0
Manual Bands% 2.0 H 0-1
Glucose 145 H 70-105
BUN 5 L 7-18
Sodium 134 L 136-145
Osmality/CALC 268.1 L 285-319
Albumin 3.1 L 3.2-5.0
Billirubin 0.1 L* 0.2-1.0

The asterisks indicates that Attn is to be given to this reading.

Any advice!!! Or Ideas???????


Thank you!!

 
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Old 07-27-2007, 06:58 PM   #2
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Join Date: Feb 2004
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Hi, I am new to the forum. Need some advice please!!!

Cindi, Hello & welcome! I'm sorry you have so much going on. I'm only a patient and not savvy enough about bloodwork to comment very much on your results, unfortunately... One quick question: did your dr. comment on your glucose level being high?

Moving along... here are some reading suggestions. Have you seen the "sticky posts" at the top of the thread list? One lists the ACR criteria for Dx'ing and classifying systemic lupus. To support a Dx of SLE, you must meet at least 4 at some time, but not necessarily all at once. (There are also other kinds of lupus other than SLE. They are called "subsets" because they share some, but not all, of the SLE diagnostic criteria.)

Another "sticky" discusses antiphospholipid syndrome, a blood clotting disorder often seen in lupus but which can also appear "standalone". It can cause a slew of problems, including strokes, TIA's, migraines, miscarriages, etc.

Another thought about bloodwork. In the "sticky post" about test results, there's a resource listed. Go into it & look for info on the diagnostic tests. And when you get yours back, look to see which of these were actually run. (I'm thinking of specific tests such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, Rheumatoid Factor, etc.---meaning tests that go far beyond the basic ANA.)

Also, in most bookstores & libraries you can find hardcovers on lupus. Look for Dr. Daniel Wallace or Dr. Robert Lahita.

I hope you post again as soon as you read the "stickies", and you see whether anything really jumps out. I do know how hard & frustrating this stuff is! I had many episodes, too, and like you, got so tired in my late 30's that I was sure it was over. One dr. even told me to look for a "single bullet theory", but failed to say what. It turned out that I had a form of lupus called SCLE, which differs from SLE in its rashes, its bloodwork, etc. My bloodwork revealed that I was positive for anti-Ro.

(Big joke, I remained ANA-negative, which happens in this form far more often than it does in classic SLE. That alone probably made me fall thru the cracks many times, as I bet many drs. order ONLY the ANA, then stop if it is negative. So I'm hoping your dr. ordered everything germane right off.)

FYI, anti-Ro is also seen in Sjogren's Syndrome, and a few of the things you cite sound somewhat in the ballpark. Sjogren's appears standalone, or often in conjunction with lupus. Hallmarks are dry eyes & mouth, hoarseness, dry lungs, and high ANA & anti-Ro & Rheumatoid Factor.

There's also a search box in the upper left of this screen, which you could use to find more info.

Anyway, I'm glad you're seeing a rheumie. Obviously I can't know if you have lupus, or something in the ballpark; but it makes sense to see one, I think. Drop a line again soon, OK? Meanwhile, best wishes to you. Sincerely, Vee

 
Old 07-28-2007, 11:19 AM   #3
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Join Date: Jul 2007
Location: Ashland, OH USA
Posts: 10
beachbum22 HB User
Re: Hi, I am new to the forum. Need some advice please!!!

Thanks for your response. I am positive the rheumie ordered all of these tests. There were a ton listed. My neuro also just ordered 14 different labs!!! He is starting to think that Lupus is a possibility also. I actually do meet 4 of the criteria for sure, perhaps 5. My follow up with the rheumie is on Aug 2. I will drop a line or 2. probably 2, as I am long winded lately....LOL. Look forward to speaking with everyone~~~

 
Old 07-28-2007, 11:20 AM   #4
Junior Member
(female)
 
Join Date: Jul 2007
Location: Ashland, OH USA
Posts: 10
beachbum22 HB User
Re: Hi, I am new to the forum. Need some advice please!!!

In regards to the Glucose. They are monitoring it. I have no history of Diabetes. But lately my glucose has been elevated. So has my BP at times.

 
Old 07-28-2007, 08:33 PM   #5
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Join Date: Apr 2006
Location: Ohio
Posts: 162
watoozie HB User
Re: Hi, I am new to the forum. Need some advice please!!!

Hi Beachbum
I also suffered with symptoms for years before they finally listened to me. I had a headache every day of my life for two years, before that I was so tired, psoraisis on both hands (really severe at times). Hip hurt so bad I could hardly walk along with other joints. I also had to have prisms in one lens of my glasses. My doctor finally sent me to see a rheumatologist and I was diagnosed two years ago with Lupus and Sjogrens Syndrome. He put me on Plaquenil 200mg twice a day and an anti-inflamatory Feldene once a day. It took about 4 months for the Plaquenil to kick in, but I feel so much better. I had a bad flare this summer for about 6 wks, but am finally feeling good again. I think I will live now, I really had my doubts for awhile!! Hope you get some help soon!! Hang in there!

 
Old 09-21-2007, 04:55 PM   #6
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Join Date: Sep 2007
Location: cheshire
Posts: 3
willow32 HB User
Re: Hi, I am new to the forum. Need some advice please!!!

Quote:
Originally Posted by beachbum22 View Post
My name is Cindi. I have been having health problems for about 11 years. I would like some input from someone with experience with Lupus. I have copied and pasted a timeline, to help clarify things a bit. I know it is long, but I have been sick for a long time. They thought I had MS, but now they are thinking it may be something else. They want to rule out lupus, but unfortunately, I meet 4 of the 11 criteria for Dx. I am also including some recent lab results. Help Please!!!!!!....................

Sorry the formatting is all messed up.

Symptom Timeline

1974
Age 10-13 Severe Migraines w/ vomiting
Suffered from depression
1981
Age 17 Gave birth to first child-only problems were severe nausea

Age 16-18 Hives when cold all over my body, usually cleared up w/in 12 hours or so.
Clumsy- always hurting myself and knocking things over. My nickname was Grace.

1982
Age 18 Developed severe psoraisis- covered 70% of my body w/ no prior history
Developed fatigue, needed naps daily

Age 18-28 During this ten year period, my biggest problem was fatigue. My days revolved around napping.
Nothing that I can think of that was significant.
1992
Age 28 During the pregnancy with my youngest child, had some premature labor and severe bleeding from the placenta
Placed on bedrest for weeks at a time, as this occured twice, through out the pregnancy.
Delivery difficult. Labor not effecting cervix. (Not dialating)
Severe shoulder pain. Could not dress self, sleep.
Dx. Bursitis Shoulder. Still have pain. 2007


Age 29 Pregnant again. Ended in miscarriage at 20 weeks. Severe hemorrhaging. Transfusion recommended but refused.
Suffered with extreme depression. Muscle weakness and extreme fatigue.

Age 30 Move from MD to Ohio.

Age 31 Pregnant again, this pregnancy also ended in miscarriage at 20 weeks.
During these last years that I spent pregnant, it is hard to discern, what was preg related and not.
1996
Age 31 Tubal ligation. Approx. 1 month after is when the diplopia began along with other vision problems.
Evaluated at the local ER, Pso Romberg test and questionable neuro examination. Subtle past pointing, finger to nose.
Recommended MRI, which was scheduled at the Cleveland Clinic-Mellen Center for MS. MRI showed several small lesions.
Dx. possible MS, due to MRI and brain stem involvement/ Sx. Amantadine RX for fatigue


1997 Severe pain in hip for several days. Could not bare weight or move around well.
Dx. Arthritis in hip. Abnormality noted. Bone scan performed. Negative. Rx'd PT, but moved to another area, too far away.
Never followed up after pain subsided. Have had ongoing problems with hip. Still experience severe pain. 2007



1998
Age 33 This is a guess at time. I had a negative LP. But experienced different symptoms lasting more than 24 hours Tremors, incontinence problems, fatigue
Ongoing visual problems-reoccuring diplopia
DX. Probable MS

Age 33 Seen in ER for severe constipation. Sonogram performed Colon totally full of feces. Suffered severe bloating. Looked Pregnant. Fatigue continued.

2001
Age 36 Move to Florida- suffered with heat related weakness and fatigue. Some hip pain during this time.

2002
Age 37 Returned to Ohio, for birth of grandchild. Only symptoms, extreme fatigue

Age 39 Started Amantadine for fatigue again. DC'd due to financial burdens. Extreme weakness after day at the zoo. Could barely walk for several days.

Age 40 Started experiencing migraines and constant headaches. Fatigue seemed to worsen. Fell at work and bruised elbow.
Developed psoraisis on soles of feet and palms of hands. Quit job as server. Served for several years. Eye exam vision worsening.Prisms in glasses.

Age 40 Took classes at JVS for Med Asst and Coding. Was sick constantly. Resiratory symptoms. Developed seasonal allergies.
Attended school for 5 months. Received certificate and went on to obtain certification as a coder.
Arms went numb while washing dishes. Could not control my arms. Follow up w/ PCP and no abnormalities found. Scheduled neuro appt.


2007- Jan
Age 42 Obtained Job as a customer service representative with the Cleveland Clinic. This is when I began experiencing the incontinence problems, leg weakness-
could not walk from my car to the office. My hearing began to deteriorate and my vision as well. Also, in the last several months, I have had dizziness. I cannot go down the steps without hanging on to something. I become very woozy and disoriented.

Age 42 Started again with respiratory problems- Bronchitis w/ spasms- Dizziness also occuring, very unsteady going down stairs= March 2007

April 07 Dx'd with moderate bilateral high frequency hearing loss- sensoroneural in nature. Audiogram and bone induction tests performed. Tinnitus. 2 Hearing aids needed.

May 07 Developed hoarseness. I am still having issues with this. Saw Family Dr. Voice rest and hydration.

May 07 Saw ENT Dx Laryngitis-voice rest hydration- for hoarseness

June 07 Follow up still experiencing hoarseness- Speech therapy referral.

July 07 ST- therapist says she cannot explain horseness. Breathing is good, posture etc. Given exercises to do at home. Still intermittent hoarseness, Aggravated by stress.

July 07 Began suddenly to have severely distorted vision and the peripheral vision on my right side was white. Called Opthamologist.
Wanted to see me right away. There is increased pressure in eyes. Macular Degeneration and some nerve involvment in both eyes.
Nothing done, I am to follow up in October 07


July 07 7-16-07- Urodynamic Study and cystoscopy performed. Doctor Vassavada recommended Sling Procedure for Stress Incontinence
I have stress and urge incontinence.Dx. 7/16/07 The bladder fills and I have no warning until it starts to empty. The Dr. said according to the study, bladder is spasming, when it reaches a specific fullness. Rx. Detrol. Insurance has not approved yet.


July 07 Phoned Neuro, they recommended VEP/ Aug 2, 2007


Present I am having great difficulty with my short term memory. I cannot remember alot of things and am constantly overdrawing our checking account. I can' tr remember the name of a movie that I have been watching, I am not reading the fuel gauge on my vehicle correctly, things like that!!! This is worsening as well. Has been going on for several months

Past and ongoing I have always had problems with the heat. It exacerbates existing problems and causes great fatigue. Thinking back, it always has, even since I was young!!!!






This is a best guess at dates and times. As it has been a long stretch of time.

I will list only abnormal results. I am waiting for results from Rheumatologist appointment. ANA, ESR,Liver Panel, Lyme, Etc. Alot of Etc.!!!


REFERENCE RANGE
Hemoglobin 10.8 L 12.0-16.0
Hematocrit 31.8 L 36-48
MCV 72.2 L 78-100
MCH 24.4 L 27-31
RDW 17.4 H 33.0-37.0
MPV 6.0 L 7.4-11.0
Manual Bands% 2.0 H 0-1
Glucose 145 H 70-105
BUN 5 L 7-18
Sodium 134 L 136-145
Osmality/CALC 268.1 L 285-319
Albumin 3.1 L 3.2-5.0
Billirubin 0.1 L* 0.2-1.0

The asterisks indicates that Attn is to be given to this reading.

Any advice!!! Or Ideas???????


Thank you!!

 
Old 09-21-2007, 05:17 PM   #7
Newbie
(female)
 
Join Date: Sep 2007
Location: cheshire
Posts: 3
willow32 HB User
Re: Hi, I am new to the forum. Need some advice please!!!

Hello cyndi
I am new to this form as from tonight have already posted a message. I only found this website as i was contemplating what to do about another mysterious symptom i have developed over the last couple of weeks. I feel for you I really do and empathise completely but I know what you need is answers. I wish i had them but sadly i am wandering around in the dark as alas most DR.S appear to be. Truth be told I don't think anyone truly knows enough about lupus yet to be able to help with diagnosing it correctly. Lupus attacks ( as far as i am aware) pretty much anything within the body and thus can mimic many other diseases. I think what most people want as I do myself is a diagnosis and treatment and for the disease to be taken a little bit more seriously, especially in view of the fact that in some cases its life threatening. Your post disheartened me quite a lot as your history although goes on longer than my own sounds oh too familiar and I am concerned that my life will follow in a similar fashion. All the posts I have read however do make me feel that this is real, as sometimes I begin to doubt myself. Especially after some of the reactions I have encountered from the professionals. It is quite frustrating when i am falling asleep at 2pm in the afternoon because i am just so exhausted, that some of my friends and family just think that i am lazy. In fact I have actually stopped telling anybody about the symptoms I experience as I think that they all think I'm a hypochondriac. In fact I missed so much of school when I was younger through strange and undiagnosed illness that one of the teachers made my parents take me to a psychologist. This message board is fantastic, as most of the symptoms i've had other people have shared as well so at last I don't feel like I am losing my mind. If nothing else I hope that by sharing your problems you feel aleviated somewhat in just knowing that you are not alone. On a more serious note I am just starting to look into a more holistic approach to aleviate some of my symptoms as homeopathic practioners are less quick to judge and are more happy to help. If I find anything that works I will post it on the message board. I have learnt already that Rosemary as an essential oil is particularly good at stimulating hair growth and strengthening the hair so I am going to give this a try, as I am sick of my mother in law going on about the amount of hair I am losing. Whether this will counteract the lupus anti-bodies I don't know but its worth a shot.
Any way it was nice to talk to you so to speak, I hope all goes well for you in the future and I do hope you find the answers that you seek. Lets hope so
bye for now willow32 xxx:

 
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