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View Full Version : Do I actually have Lupus? Why is an answer taking so long??



mskristaesq
12-03-2005, 06:43 AM
I am a 35 yo female with a family hx that includes Myasthenia Gravis (mgm), Multiple Sclerosis (pgm) and Ocular Muscular Dystrophy (Father). I have always been fairly healthy but the last two years have become increasingly more ill with no good answers as to why. Please tell me if you have any suggestions, thoughts or referrals to where I can turn for proper and prompt diagnosis.

Brief hx of symptoms:
Four years ago - develop severe skin "allergies" to surgical tape and Steri-Strips. Evident during a partial hysterectomy. Skin will become irritated and develop allergic rashes that never happened prior.

Two years ago - onset of severe chest pains and regular palpitations, not related to stress or panic. Negative arteriogram. Coinciding with pervasive rash on abdomen and chest (first experience of rash in lifetime).

Begin random sweating occurring almost daily. (Not related to stress or activity.)

First dx of hypertension. Begin medical tx for hypertension (average BP 150/110 w/o medication).

Eighteen months ago - begin random fuo's. (Fever unknown origin.) Generally low-grade, a couple times went up to 101.5-102.

Had a reduction mammoplasty- doctors mistakenly used surgical tape rather than sutures despite awareness of my allergy to the tape – SEVERE allergic reaction leading to infection and second surgery to repair. Trouble getting rash under control.

First experience of boils (x3 in one month on buttocks)

Begin severe fatigue and first onset of visual disturbance. Normal vision 20/20 but occasionally vision becomes blurred. Begin severe headaches no more frequent than 1x month.

One year ago - became SEVERLY ill requiring hospitalization 2x in the 2 months it took to diagnose problem. In this time experienced rectal bleeding and persistent loose bowels, hypertension rising as high as 200/140, severe headaches, o2 sat dropped to mid 80's and required oxygen in hospital, severe folliculitis rash that was unresponsive to treatment, irregular ovarian ultrasound with tumor r/o, went from being able to run 3 miles a day to barely able to walk, coordination problems and falls, severe weakness and fatigue, metal taste in mouth and metallic - like rust colored sweat, feeling of internal tingling like a human tuning fork, loss of feeling in arms. Ultimately diagnosed with Lithium toxicity suspected as a result of interaction between having been on Eskalith 900mg QD for approx five years and recent introduction of antibiotics for ear infection - took seven courses of antibiotics over two month period. Was removed from Lithium and symptoms all resolved w/i a couple days. This ended in March 2005.

July 2005 - notice petechiae on abdomen - small and not clustered - no more than 30 on whole body, just noticeable because all new.

September/October 2005 - begin to have falls and accidents. Fell down stairs, several falls while normal walking (feeling of legs "giving out" in different places, sometimes generalized weakness, sometimes right knee or left ankle or both legs), caused MVA in which I rear-ended another person due to sudden onset coordination difficulty, begin having almost daily periods of visual blurriness, random weakness in extremities, severe parasthesia on right side but overall parasthesia unpatterned and random in all four extremities (greater prevalence on right side). Begin to walk into objects, drop objects held in right hand, occasional general difficulty walking. Some days or moments completely normal then sudden, unexplained onset. Begin overall joint pain. Appear to hit a 3-day cycle of health. Strong first day, tired and increase in symptoms second, almost needing complete bed rest the third. Begin to easily catch viruses that others who are exposed to same bugs do not get nearly as severely. Ongoing difficulty with deep breathing – almost painful to fully expand lungs. Some days almost complete inability to walk. Notice an increase in hair loss when showering and on pillow. Two more occurrences of boils on backside. Increase in chest pains and PVCs - primarily at night while reading in bed. Two occasions of unexplained, unprecipitated complete “paralysis” of extremities while at work at computer, each event lasting ~10 minutes. Begin stiffness in joints and muscles vacillating with feelings of weakness and tingling. Have not ingested any alcohol in many years, but begin experiencing vertigo and random feelings of room spinning and sudden onset feelings of being “drunk or high” while driving – trouble focusing visually, weaving across lane trouble controlling vehicle. Random periods of flushing and sweating. Ongoing night sweats, particularly in chest region. Occasional stuttering speech and slurred speech.

I have had to stop driving as a result about a month ago, though some days I feel perfectly fine to drive: these episodes have been too frequent and too unpredictable to chance hurting someone in an MVA.

No significant weight loss or gain.

Denied voluntary attempts at blood donation by ARC due to low levels of iron, 2004 2005.

HX of TESTING and Findings:
Fall 2005 – 2 negative MRIs of head (“normal aside from several small cystic spaces in the lower lateral basal ganglia bilaterally” –apparently this is of no concern)
Fall 2005 – MRI of cervical spine basically unremarkable, only finding C5-6 mild right foraminal stenosis.
11/05 – negative Carotid Duplex Sonography
10/05, 11/05 – negative chest x-ray
11/05 – negative spinal tap
11/05 negative blood work for hx of heart attack, infection
11/05 third negative HIV in two years
11/05 negative 24 hour urine collection testing for Pheochromocytoma
11/05 24 hour Holter monitor shows some sign of ventricular ectopy and ventricular escape beats – referred to Cardiology and Electrophysiologist. Nuclear stress test normal. Two week Holter, normal. (Experienced many symptoms of light-headedness, parasthesia, fatigue and several falls during monitoring period – heart rhythm normal during all episodes).

basically unremarkable, only finding C5-6 mild right foraminal stenosis.
11/05 – negative Carotid Duplex Sonography
10/05, 11/05 – negative chest x-ray
11/05 – negative spinal tap
11/05 negative blood work for hx of heart attack, infection
11/05 third negative HIV in two years
11/05 negative 24 hour urine collection testing for Pheochromocytoma
11/05 24 hour Holter monitor shows some sign of ventricular ectopy and ventricular escape beats – referred to Cardiology and Electrophysiologist. Nuclear stress test normal. Two week Holter, normal. (Experienced many symptoms of light-headedness, parasthesia, fatigue and several falls during monitoring period – heart rhythm normal during all episodes).

Blood work:
CBC – normal range
Differential - normal range (neutrophils 71, normal range 50-70, unremarkable)
Sed Rate – 22
Folate RBC 734
Negative for Mercury and Lead
Comprehensive Metabolic Panel – all normal range except Glucose
Glucose 52 (normal range 65-99)
Vitamin B-12 175 (normal range 180-914)
ANA Panel result Abnormal – 8.0 (Normal <7.5)
ANA Panel Titer Result – 1:40 (Reporting on lab test as Abnormal result)
ANA Panel Pattern – Nucleolar. Speckled pattern also detected.

.

Referrals and Tx:
Referral to Cardiology complete with negative findings.
Referral to Neurology resulted in referral to Rheumatology. Pending second opinion in neurology at insistence of GP and Cardiologist – they both would like me to see a more seasoned neurologist known for diagnostic skills. Appointment at Vanderbilt upcoming.
Referral to Rheumatology pending.
Psychiatry reports consistent progress and asymptomatic x 18 months.
Three ER visits between 10/05 and 11/05 as instructed based on MVA (minor head injury/concussion 10/07/05) and falls all resulting from recent symptoms.

Current medications:
Prevacid (30 mg QD – constant for four years)
Tegretol (200 mg TID - replaced Eskalith 3/05)
Altase (10 mg QD – x 2years)
Endural (20 mg TID – x 1 year)
Clonidine (0.01 PRN when BP elevated)
Effexor (150 mg QD – discontinued 10/05)

Begin weekly B-12 injections. As of this writing have had three injections with no apparent change in symptoms.

Any suggestions or recommendations would be much appreciated. Deteriorating health with no explanation is incredibly frustrating. I KNOW something is wrong – I just want to know what or where to go to find out what so I can begin appropriate treatment and return to living life as normally as possible. I am willing and able to go to any hospital or research center in the US. I will read all posted responses and can also be reached for discussion via email at:
DoIHaveLupus@yahoo.com

hippimom2
12-03-2005, 07:35 AM
Welcome. It's hard to tell if you have lupus because so many diseases mimic each other. I'm glad you are following up with a neurologist. A lot of your symptoms sound like MS because of the vision and weakness, etc. It definitely sounds like something is wrong with your health and I really hope someone helps you get to the bottom of this. I know first hand how frustrating it can be to know something is wrong with you, but for doctors not to be able to figure it out.

Hopefully some others will be along who can offer some more insight. Take care.

hatlady
12-03-2005, 12:25 PM
Welcome!

You've travelled a rough road, and I wish I had answers for you. Unfortunately, none of us here are docs. Lupus can be tricky to diagnose, which doesn't help either. I take it with all you've gone through you're working with a rheumatologist, and possibly a neurologist as well.

The only support I can offer you - sometimes it takes a couple months for the B-12 to have a full effect if you've been very low.

As far as the blood donation - remember they want blood iron to be higher in the range. I think the range used by my local labs have a normal low end for iron at around 9, the blood bank wants your blood at 12.5, So just being denied does not mean you're anemic. When I was able to give blood, I was turned down about every other time for iron levels of around 11.

Hugs - we all understand the frustration, you're a place where you can vent.

shanniefly
12-12-2005, 08:58 PM
I hope that you are having luck finding out what is happening with your bod!!! I understand the frustration with just wanting a diagnosis!!! It seems you are very knowlegable, and make sure that you take all of that information with you to every singel DR. appointment. For new Docs...sometimes it helps to send that information ahead of time so that they can see what you have had done, when it was done, and where they should go from there!!!

Some of your symptoms are Lupus like, but as stated before...a lot of things overlap!!! I wish you nothing but the best on your search for answers and will pray for you!!!

TracyDawn
12-14-2005, 09:00 AM
Sometimes it can take forever, for me it took 7 YEARS. The symptoms would come and go, or change and move around. Labs would vary. It's very very irritating and wearing on you just to know something is wrong and not know what it is. When I finally got the dx, I wasn't happy but I cried with relief cause I finally had "validation" of sorts for how I have been feeling for so long. My best advice would be to be persistent and make sure your dr listens. I have had some awful ones over the years and that can make you feel worse. {{HUG}} I hope you get an answer soon.