A case for House - Please help if you can!

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Dean1967
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/8/2009 1:00 PM (GMT -7)   

I am a 41 year old male that was in good health prior to March 2008. The only medical issues beforehand was high cholesterol which I was taking 20mg of Lipitor for. To give some structure to this post I have broken it into symptoms, actions taken, medications and other treatments under taken.

 

Symptoms:

 

1.      Facial numbness – started March 2008 at the top of the head on the right hand side and then spread to the left hand side. Felt like I had shots of Novocain. My skin at that time (and to this day) is sometimes sensitive when hair brushed or moved in certain directions. During March/April the numbness proceeded down the right side of my face to my chin. Then the numbness proceeded down the left side of my face to my chin.  In August the numbness proceeded to the lips, gums and throughout the mouth. It is now at the stage where I am frequently unable to feel food on my lips and in my mouth (especially with small pieces). This causes me to bite my lips and cheeks. Additionally, food falls out of mouth when chewing which is rather embarrassing.

2.      My scalp itches really bad at times. This started from the beginning (March 2008). Water on my face has the effect of causing itching around my eyebrows.

3.      October 2008: Episodes of Reynaud’s Syndrome came on strong with severe discoloration of the hands and feet. The tips of my fingers appeared at times to be completely white as if no blood was flowing through them. At other times, my left thump had a tingle in it that is similar to that felt when the nail is cut too short exposing flesh that would normally be covered by nail.

4.      From November 2008 I developed severe fatigue with aches in my right leg in particular.

5.      From October 2008 the vision in my left eye became blurry. It proceeded to get much worse and now I can’t read anything using only my left eye.

6.      From December 2008, I have had trouble eating with fits of coughing when I first start to eat. This has led to weight loss of around 20 lbs from a healthy 175 pounds to a skinny 155. Additionally I recently developed a runny nose while I am eating and hot flashes after eating.

Actions taken:

1.      I went to see a Neurologist and Rheumatologist in March 2008 and had a battery of tests done including MRI’s and Cat Scans of the head and trigeminal nerves. Thankfully the MRI’s and cat scans came back normal. Initially the Neurologist said it was a rhuematological issue and the Rheumatologist said it was a neurology issue. The final diagnosis is Mixed Connective Tissue, but that is a broad category and tests have not narrowed it down. The blood work from April/June and November showed up the following similar results across the 3 testing dates:

1.      ANACHOICE SCR, W/REFL IPA ANACHOICE SCREEN: POSITIVE

2.      SM/RNP AB: >8.0 POSITIVE

3.      SJOGRENS’S AB (SS-B): <1.0 NEGATIVE

4.      SCL-70 AB, EIA: <1.0 NEGATIVE

5.      ANA TITER AND PATTERN – ANTI-NUCLEAR AB TITER ANA PATTERN; 1:1280 SPECKLED

6.      RHUEMATOID FACTOR: 248 H

7.      CCP IGG: <20 NEGATIVE

8.      C-REACTIVE PROTEIN: 0.1

9.      WBC: 4.0

10.  TSH: 5.57<H>

11.  LYME ANTIBODY: <0.9

 

Medications:

1.      Shots of Cortisone in March/April 2008 – no effect or improvement.

2.      April - Course of Prednisone - no effect or improvement. After this it was decided to take a wait and see approach to see if it got better or worse.

3.      December 2008 – another course of Prednisone (20mg per day in the morning) – this eased the fatigue and had a positive affect for about a month on the Reynaud’s.  The pains in my right leg disappeared and a lesser pain surfaced in my lower left leg again about one month. I have been advised that the next course of medication would be methotrexate, an antimetabolite/immune suppressant.

 

Other treatments undertaken:

1.      Energy healer/Acupuncturist April 2008 until June 2008

2.      Total body detox including going off Lipitor from April until November.

3.      Chiropractor from June 2008 until July 2008 – made some neck adjustments although nothing new to add overall.

4.      Neurology Chiropractor September 2008 – nothing new to add.

5.      Reflexologist – December 2008.

 

 The question I have is does anyone know what I have and how I can cure it. Thanks for your help.


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 1/8/2009 4:08 PM (GMT -7)   
Sorry to hear about your illness. I do not know about the neurologist part, as my neuro problem was not due to lupus, but to TB. If they dignosed you w/MCTD, you have autoimmue disease. In a simple way saying it is that the body gets the wrong message and fights against your own body. There is no cure, but medications in general can control the disease. Some people may have a remission stage which they don't need medications, but that's not me. I have been on medications for long time. Less when it's mild; more when it's flaring. Joint pains, raynaud's, fatigue, photosensitivity (sun exposure), fever are very common w/lupus and MCTD. I used to hv MCTD and now is lupus. More members from this forum will surely give you more info. If you have any question, please feel free to ask.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/8/2009 7:11 PM (GMT -7)   
Hi Dean,
 
You have a very high positive ANA titre (anti nuclear antibody).  You have a lot of autoantibodies floating around in your blood which usually means something autoimmune is going on. The test doesn't indicate how severe the disease is, just that you have a lot of the "bad antibodies" in your system. An ANA titre of that degree is not ignored.  Your doctor will definitely be pursuing this further.
 
You tested high on the TSH test. (thyroid stimulating hormone).  That indicates you might have an underactive thyroid or hypothyroidism. The autoimmune disease related to the thyroid is Hashimoto's Thyroiditis.  There are quite a few of our members with Hashimoto's that will weigh in on this I'm sure! I don't know where your number lies in the high range. It might be just high of normal.
 
Overall, looking at your test results and reading your symptoms, I would say MCTD as well. Neuropathy or numbness is very common in Lupus. You have Raynauds.  MCTD simply means you have more than one connective tissue disease.  Lupus, Raynauds, Sjogren's, Sarcoidosis, Polymyositis, scleroderma, rheumatoid arthritis, dermatomyositis, are all connective tissue diseases. I've probably left out a few too.  The skin issues you have might be dermatomyositis. I recommend "googling" those diseases to see if you recognize any of the symptoms of them.
 
What you need to do is keep on top of your rheumatologist. I think they're the one you need to focus on. With autoimmune diseases you have to be proactive and really get assertive with your doctors.  It can take a long time to get a diagnosis, or it can take very little time if all the puzzle pieces fall into place.  Just so you know, with any of these connective tissue diseases, the treatment is the same. Prednisone, Imuran (Azathioprine), Methotrexate, Cytoxan, Cellcept, etc.  Your doctor will know what combination is best for you. As far as a cure... There isn't one for autoimmune diseases.  All we can do is treat the symptoms, try to stay out of "flare ups" and reduce our stress. I hope your case isn't one for the show "House"!  I hope it's much easier to solve and you get treatment quickly.
 
Stay in touch with us and ask any questions you need okay!
 
Blessings,
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


Dean1967
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/9/2009 7:43 AM (GMT -7)   
Hi Ginny and Omega, Thanks for your reply. I will check out Hashimoto's Thyroiditis and will discuss it with th doctors. I have done a lot of research and discussed it with my Rhuematologist. The symptoms point to SLE but with SLE there is usually inflamation and apparently I don't have that which is why it is baffling. Thanks again and I look forward to comments from other forum members.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/9/2009 9:43 AM (GMT -7)   
Hi Dean,
 
Yeah, your C reactive protein levels are normal, indicating no inflammation, BUT, that is just a snapshot of what was going on in your body at the time the blood was drawn. That number, along with other inflammatory tests isn't very accurate and can change throughout the day. It could very well be that you DO have inflammation occuring systemically.  Repeat tests are important to establish a trend. That's one of the reasons why a diagnosis can take a while to get. 
 
Keep plugging along!  Answers will come soon enough!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 1/10/2009 3:01 AM (GMT -7)   
Either way your docs should be able to treat you with meds and treat your symptoms! Alot of us dont have diagnosis but are still being treated. Check out Mystery Diagnosis on TLC. Its a real life House.
How long were you on the Lipitor before you had symptoms? Just curious sincpe you kept mentioning it. It looks like they were orginally thinking a drug induced Lupus huh? Your TSH was fairly high. It should be around 2. I would question that more. Maybe Hashimoto's disease? Have you looked at that at all? Especially with your coughing fits, thats a common symptom with thyroid issues. They weight loss is odd with hypothyroid, but if you arent eating as you are saying. Get a refferal to an endocrinologist. They will do some more blood (T4, T3, anti thyroid AB) and maybe an iodine uptake test. Make sure you mention your eatting difficulties.
Good luck!
Melissa
Dx: UCTD vs autoimmune spondyloarthropathy vs psoriatic arthritis (ie Limbo x5 yrs) Raynaud's, proteinuria
Rx: Plaquenil 400mg, Ultram PRN, Sulfasalazine 2 gram


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/10/2009 5:03 PM (GMT -7)   
Hello and welcome. I don't have a lot to add to what the others have already told you. Just make sure that you have a really good reumatologist who will really look into this for you. Like Ginny said, your bloodwork shows a lot of autoimmune stuff going on.

I hope it doesn't take too long for you to get answers and treatment. Let us know what other questions you have. This is a great forum full of very supportive and helpful people. I hope you will keep us updated on what you find out. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Co-Moderator: Lupus and CFS Forums


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