Please help me!!! very frustrated and don't know what to do - on the right track?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

red83hd
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/9/2009 6:56 AM (GMT -7)   

I don’t know where to start, please be patient and bear with me.  I'm a 38 yr old male.

     Since I was young I've had several "mystery illnesses" that I've never really gotten a diagnosis. When I was 4 or 5 I was admitted into the hospital for several days with the only symptom of a 105 degree fever, which just went away and they couldn't say why or what was wrong.  At 12 yrs old I went for a year running fevers and not "feeling right", my father was in the air force and they medivaced me from fla. To Mississippi for 2 weeks again no explanation but they did put me on a drug called INH for a year, because they thought I had been exposed to tb.  In college I felt like my health changed dramatically.  I ended up in the hospital near death on the critical list for 7 days, and then I just got better and the doctors couldn't explain how or why I was so sick. The only reason I was admitted in the first place was the docs said "I just didn’t look right".  Within the next year I became extremely tired, loss of concentration, and memory loss, and depression.  I've always had aches & pain on and off. I've been tested from everything from cancer to mono, allergies, you name it and everything in between and finally if that’s not frustrating enough when the doctors don’t have answers, some cop out with saying "ITS JUST IN MY HEAD". In 1996 I was working overtime and noticed my hands were swelling and my joints would hurt me awfully.  So much so that between the pain and the swelling I couldn’t grasp things, with both hands I could barely turn a door handle to open it.

     In '94 I was diagnosed with 5 herniated disc and since then I've had 3 back surgeries.  In 2000 I became disabled due to the back problems, with back surgeries in 2000 and 2001.  I live with back pain everyday both upper and lower back.   Any symptoms I've had since these last surgeries are always blamed on my back which I can totally understand.  I have chest pain at times - it’s been ruled out as not being a heart trouble so docs say it’s due to my back.  I get tingling and pins and needles in my hands and finger tips at times as well as in my feet and lower legs. My knees swell and hurt a lot. I know that the back can cause these symptoms.  I feel though that there’s more to it than that and I beginning to wonder about some other symptoms. 

     Here’s why; I start having these bouts where I would get totally exhausted and would have to take naps - sometimes just getting up and getting ready for the day would do this.  Some days it’s just difficult to get out of bed.  I would feel like I was just lazy-but I felt there was more to it.  I would get sick for days often which I thought was just due to having overdone with my back.  Some of these bouts were feeling like I had the flu, without the throwing up and diarrhea. about 3 years ago one day I noticed visible blood in my urine.  I had things checked with a urologist (sp) and they confirmed I had blood in my urine, but could not figure out why.  Every urine test since then has had blood and protein in it. I started having frequent headaches with no explanation. Then for the last year in a half I starting running low grade fevers.  Then last march I developed a nickel size sore on my leg.  It turned into an ulcer that was deep and odd looking. It lasted until in June it finally healed, until a week later I developed another one about an inch in a half away from where the other one was.   I live in the north and was sure it was not due to an insect bite.  I went to the emergency room when this one had a swelling around it the diameter of an orange and was purple and scaly looking.  The er doc looked at it and he couldn’t do anything with it that it was Pyoderma gangrenosum and I needed to contact my gp for blood work.  My gp did some blood work and found that some things were elevated so he sent me to a rheumatologist. She did more blood work and ruled out rheumatoid arthritis.    I apologized for not knowing the blood work result, but there were like 7 specific things the blood work tested for.  I had 5 of the seven things, but the 2 things that would clinch a lupus diagnosis, I didn’t show. She was able to make a diagnosis of MCTD and said she was leaning more towards lupus.  Oh and by the way, my paternal grandmother had lupus. 

     With some of these flare ups I get so sick.  It’s like the worst flu you've ever had with fever and chills, ache and pains, dizziness, without the throwing up and other stuff.  I feel like the time I was in college in the hospital.  I feel like I'm gonna die, then after awhile of it I want to die.  Is this common with mctd/lupus?  I called the rheumatologist.  They had me come in but I saw her PA she told me that I shouldn’t be that sick with a flare-up and that I was barking up the wrong tree.  That it was some else causing this. She continued to basically tell me that I didn’t have this and I should start looking elsewhere.  The thing is, is she basically contradicted the rheumatologist in a lot of the things she said.  Like for instance the rheumatologist said it could take a long period of time to get a full diagnosis, where as she told me that if I had lupus or something in this area that they would be able to make a diagnosis right away.  Its cut and dry I either have it or I don’t, that’s when she said I was barking up the wrong tree.  My wife and I sat there blown away.  We've been so upset over this, no one wants to have a dieses, but we felt the doc was on the right track; it made so much sense and answered a lot of questions.  Now this PA tells us we have to start over from square one.

     What do you guys think, am I on the right track?  Is it just the PA's inexperience? or should I start looking other places?  Is it common to have some flare ups that feel like the worst flu ever and that your gonna die?

 

I know it’s a long read but I felt I needed to give my history of what’s gone on- sorry.            

      

 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/9/2009 7:57 AM (GMT -7)   
Hi Red. Welcome to the forum.  I wish you didn't have to be here.  I wish none of us had to be here! You have so much going on. Please don't ever apologize for giving your detailed history. It helps us to help you!  Plus, this is why we're here. To support you and give you some hope.  :-)
 
Your post has a lot of detail in it which is great.  Have you been keeping a diary or journal of all your symptoms, etc?  After a while you start to forget stuff. A diary is a great tool.  But it sounds like you have all your info well documented!  Do you have at least 4 of the 11 criteria needed for a diagnosis?  www.lupus.org, will have the criteria for you to check out.  If you have copies of your blood work, let us know what the tests were.
 
Yes, you can definitely have that flu feeling without the vomitting, etc.  It's a classic Lupus symptom. So is a low grade constant fever. Joint pain, swelling, aches and pains, dizziness, depression, protein and blood in your urine, etc. You've described all of the Lupus symptoms. (there are more, unfortunately).  That chest pain you have. Does it get worse when you lay down? Is it a sharp, stabbing pain?  If so, it's probably Pleurisy. Inflammation of the lining of the lungs.  I had it bad.  That's what got me into the hospital, and a diagnosis 5 days later.
 
"Just in your head."  I can't tell you how that angers me. I was told that as well. In fact, the doctor yelled at me and accused me of trying to get some strange attention. I wanted to kick him in the nards. When you get that kind of treatment, you need to move on.  And for the PA you had to talk to, they're not worth your time either.  It's not uncommon to go through 3 or 4 different rheumatologists until you find one that truly takes you seriously.  I think one of the misfortunes you have is that you're a guy.  9/10 people with Lupus are women.  It might be one of the reasons you are having difficulty.  We do have a male member here. Bill. I know he'll see your post and reply with some great advice for you from a man's perspective. In fact, I was having trouble with rheumatologists. I decided to see an Internal Medicine Specialist instead. WOW. Best thing I ever did. She took me seriously, and put the puzzle pieces together in record time.  Hooked me up with a rheumy, got me into the hospital, and boom.  I was diagnosed and treatment started immediately. 
 
You do have a diagnosis of MCTD.  That's a positive step forward!  MCTD is treated with the same medications, and attention as Lupus. In fact, my Lupus diagnosis has sort of changed to MCTD as well.  Lupus is one of many mixed connective tissue diseases.  I have more than one, which is why my diagnosis has a new name.  I'm confused. Your rheumy gave you a diagnosis, but you've been told by that PA to start over? I think finding a new rheumy to go to is needed, or get a referal to an Internal Med Specialist.
 
I really hope you stick with us, Red.  I think we can help you get rolling in the right direction. Plus, you need to know you're taken seriously here. You and your wife need to know that. 
 
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

35 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, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/9/2009 8:02 AM (GMT -7)   
Hey Red,
 
We have another new member, BigBry.  He's looking for a diagnosis as well. Check out his post. You two might want to share experiences.
 
 
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

35 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, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


red83hd
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/9/2009 9:18 AM (GMT -7)   
Ginny, Wow - thank you so much for the quick and detailed response. Its encouraging to me as well as my wife. I liked the diary idea, I will start doing that. I could remember the blood test info but when I said something to my wife about it - it turns out that she wrote the results down - she is so great! Im not sure what it means but here it is:

Sed rate elevated
positive ANA
low white blood cell count 3.5
RNP antibody positive
Blood and protein in urine
Abnormal (elevated CRP)
Neg for lymes
Normal RA factor
Triglys 172
Sugar 102

I dont know if this means anything but I know that the last blood test I had my triglys were out of whack. 2 other things I forgot to mention = one is during the last year I lost 50lbs. without trying, that was before the diagnosis. the other thing is that for the last 6 months I've been on plaquenil 400mg a day but I havent noticed any changes. I have an appointment with my rhuematologist in a little while today so Ill be talking to her again and not the pa. thanks again so much for your reply. I like the bible verse you have in your signature. my favorite verse is Isaiah 40:29-31

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 3/9/2009 11:27 AM (GMT -7)   

Hi Red - Just wanted to say welcome and tell you I share some parts of your story.  I hope you get some answers.  I also have had (for many years) the fevers and symptoms like flu w/o vomiting/diarrhea that just end up "going away" and nobody knows from whence they came.  My white cell count is low during these bouts - then bounces back to normal within a month or so.  Usually liver enzymes are elevated at the same time and then return to normal.  CRP is also elev. at those times.  I have an elevated ANA all the time, and all the muscle/joint pain issues, along with rash/sensitivity to sun, brain fog, fatigue, yada yada.  But since none of the other blood tests come back positive (RA, Anti DNA, and names I don't remember) I am in diagnosis limbo as well. 

I've been on the Plaquenil for 3 mos and I do feel it has helped somewhat - especially with the "down and out" fatigue I was having before starting it - and I am hopeful to see further improvement as time goes on.  I also have herniated disc problems - in fact, the more intense symptoms that told me something else was going on other than fibromyalgia, started after the disc problems began.  You mentioned chest pain.  I had palpitations and near fainting spells while going through the rehab for my back - that led to a heart cath that showed everything was fine, which was great news, but  I know how frustrating this ends up being - especially when you are told your problems are in your head (which just happened to me for the first time). 

I just want you to know you are not alone - you will find lots of help and support here.  I hope your doctor visit goes well this afternoon! 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/9/2009 1:09 PM (GMT -7)   
Hi Red!  How did your appointment go? 
 
Interesting! Your triglycerides are out of wack eh?  That's a symptom too. Do you get any heart palpitations or flutters in your heart/chest?
 
Your blood work definitely has something going on. It's not uncommon to have a negative RA factor. Mine is negative too. I'm glad you were tested for Lymes. Important because the two diseases mimick each other so much.
 
I'm not on Plaquenil, but lots of members here are.  You might be one of those people that requires more than just one medication to treat your symptoms. A little experimenting is somtimes necessary to find the right combo.  I'm on Imuran (Azathioprine) and Prednisone. Prednisone is often prescribed along with Plaquenil.
 
Another set of tests you really should have done are the Lupus anticoagulant tests. These will check to see if you have a blood clotting disorder called APS (anti-phospholipid syndrome).  Lupus will create a protein in the blood that makes the blood thick and sticky. It can put a person at a high risk for a stroke or heart attack. I wasn't tested, and ended up having a stroke at the age of 28.  I'm on life long blood thinning meds now. The other test is the Anti-cardiolipin test.  Both are really important.
 
The weight loss is a sign of something. That is one of the big red flag symptoms.  I lost about 35 pounds the few months before my diagnosis.
 
Definitely keep that diary. It will be really important for you in the future. Any time you can collect copies of your test results that's good too.
 
You're doing all the right things, Red.  Your wife is sure a huge help isn't she! Keep us posted on how your appointment went today.  Oh, I love that scripture from Isaiah too!
 
Take it easy!
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

35 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, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/9/2009 3:41 PM (GMT -7)   

Hey Red! Just wanted to welcome you to the forum...Everyone here has helped me so much and I know they will give you some great advice! I know it is frusterating having to go through all of this and I really pray you will get the answers you are looking for soon! Hope you stick around and let us get to know you better!

 


Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


red83hd
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/10/2009 12:15 PM (GMT -7)   

Thank you to all!!  I can not tell you how comforting it is to talk to others who are in the same boat!!  The posts were such an encouragement to my wife and I, it gave us such a feeling of relief that we have someone on our side.  We have felt like we have been in a battle all by ourselves and now we have allies!!  It is nice to have positive reinforcement behind us!

We went to see the rheumatologist yesterday and Jenny was right I should have not gone back to see her, I was able to see the Dr. and not the p.a., but it wasn't much better.  I am not one to complain and I have a high tolerance for pain so when I say I feel a certain way, it is without exaggeration.  I have flair ups where I am so sick that I truly feel like I am going to die, not from depression, but from feeling so horrible.  I have no quality of life.  The Dr. told me that she doesn't have any patients in her practice that are as sick as I am, and once she told me that, she started printing out my blood work reports, she was done with me, she gave up and referred me to another dr.  So once again, no answers.  We were blown away and angry.  I guess it is just as well.  She felt that the results of my blood work are too 'mild' to feel this sick.  Whether or not she sees other people this sick or not, I feel this way, and I think she needs to deal with how I feel and try to help me find answers.  She said that all she could really do was to put me on chemo-therapy or another type of toxic drug.  She got an attitude and really had no time for me.  As a result of the way she acted yesterday I really don't want to see her again anyway.  So, the new doc is quite a travel for us, he has a closer office, about an hour away and we can't get in till May 15.  I am seeing a kidney specialist in about two weeks to address the protein and blood in the urine.   

My wife tells me that I am only supposed to take one day at a time so that is what I will do.  The good news is that I had a great day yesterday as far as how I felt, after the dr. we made it a family day and ate out and did things with the kids, it felt so good to get out and enjoy myself!      


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 3/10/2009 2:15 PM (GMT -7)   

Hi Red - Sorry you didn't have a good response from the doctor.  At least you are moving on, and already have scheduled with another doctor.  As so many people here say, sometimes it takes a few tries before you get a "good" one.   I'm glad you are seeing a kidney specialist - I think some of your symptoms could be coming from that direction.  Your wife sounds wonderful - glad she's in your corner, and you were at least able to enjoy your day yesterday.

Hang in there -

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/10/2009 7:26 PM (GMT -7)   
Ummmm, I would be blown away and angry too by her behaviour too. How odd to admit you're the sickest patient she has, but won't do anything to help you figure out why?  I think you're very wise to move along to another doctor!
 
Even though the new doc is further away, it will be well worth it if they work out for you. I have to drive for an hour in the city to get to mine! 
 
Best of luck at the nephrologist in two weeks.  Maybe they'll be the one to give you the time and energy you deserve!
 
More good days for you and your family!!
 
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

35 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, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 3/11/2009 3:46 AM (GMT -7)   
Hi, and Welcome! Some things came to mind. Your details caused "red flags" to me. It seems you are going through what I am. I highly recommend going to a teaching hospital. You also should have some full body cat scans and mri's with your full panel blood work. Why? It's evident you have A autoimmune disease. Which? Don't know. In my case, I had to get a biopsy done after stumping my pcp's entire clinic and a hospital...then I got put in a teaching hospital. After biopsy, it showed I have necrotizing gramultous inflamation (a rare inflamation disease usually triggered by auto immune disease) and tumors and the "mystery autoimmune disease." Please get a doctor who will listen to you. If you need to, every single time you get a flare up make a appointment with your pcp...drive them nuts by going over and over and over to them and say "well something wrong, we need to know what". Basically your body is attacking itself instead of the bad stuff. Its whathappened to me. Keep us posted, and good luck.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications:  Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/11/2009 5:41 AM (GMT -7)   

Red, I have never heard a doctor tell anyone they were too sick to have lupus?  That makes no sense to me, as lupus can make you very sick.  And I think you're bloodwork adequately justifies a dx of an AI disease.  It sounds almost as if your rheumatologist did not have a great deal of experience working with the autoimmue diseases (not all of them do), and simply wanted to pass you on.   Keep trying and you'll find a great doctor.  For what it's worth, I think it's obvious that something is definitely going on with you.    Hope you feel better soon.

 

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 3/11/2009 8:45 AM (GMT -7)   
Hi Red,

Welcome to the board! I'm sorry to hear you have been put the medical ringer, unfortunately, it is part of the process when trying to get a diagnosis with lupus or simular diseases. All too often doctors are not educated in autoimmune diseases and rather than admit their ignorance they try to make the patient feel as though "it's all in their head" or as though we ahve done something wrong. It is very sad.

As Ginny and the other members have stated, you definitately have many of the markers for lupus. Do not give up the fight, continue on until you get some answers. It may take several doctors, again it's unfortunate, but our medical system is that broken. I have been diagnosed since 1997, I have been all over the U.S. to see doctors and seek for answers. While I was lucky in receiving a diagnosis rather eary, I was not comfortable in some of the answers I was getting regarding my level of care, so I continued my own search to see what my options were. You are your best advocate. Today, have a great doctor, but I also travel 3 hrs from home to see him. Unfortnately this can be rather exhausting and expensive because I see him every 4 to 6 weeks right now. Many times it requires an over night stay and things of that nature.

Anyway, enough of that. Sometimes we don't realize benefits of plaquenil until we stop it. While you don't think it is helping you, it most likely is helping quite a bit, but you probably need additional medications to aid in controlling you disease, as it sounds as though your is quite active or advanced at this point. Once you find that right doctor to work with you, he or she will explain all of that to you. Many of us are on steriod, plaquenil and an immunospressant to control our lupus. Of course this does not relieve the pain, but rather just keeps our body from spiraling out of control and damaging organs and helps to reduce swelling and such. When it comes to pain, that's a whole other ball game.

Please feel free to post any questions you might have. This is a great group of people here, they truly are very supportive and will give you honest up front answers. And if we don't know we will tell you so, but will always be here to lend you a shoulder to lean on!

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/14/2009 10:49 AM (GMT -7)   
Red and wife, welcome to the forum, so sorry for what you are dealing with and how you've been treated. I wanted to let you in on a little secret...I have Lupus with multi organ involvement, in fact; i am writing you from dialysis, and have NEVER had a positive ana! Blood work is only a part of the puzzle. Your symptoms should bear much more weight. Many people here will tell you that their blood work rarely reflects what they are feeling! There is no 'litmus' test that positively identifies lupus, how unfortunate for us! It seems that most docs are not comfortable putting alot of stock in the patients reported symptoms! Thet call this 'subjective' data. However, it's all we have to go on at times. Don't let their haughty attitudes intimidate you...you know your body and what you are experiencing! Hang in there! God bless you, Judy

BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/14/2009 3:21 PM (GMT -7)   
Hi Red,

I too have been searching for a Dx. I have the blood and protein in the urine, fever and cold sweats, extreme exhaustion which makes it impossible to do anything. I also have muscle weakness. From your blood work you have the markers for MCTD. It is a Dx in progress as I have learned. One thing I can tell you it is definitely NOT ALL IN YOUR HEAD. Things I thought were trivial little pains and illnesses were my condition getting worse and worse. I have been for sleep tests countless CT and MRI scans allergy tests blood test until I’m on a first name bases with the people at the lab.

I wish you all the best in finding an answer and a means to cope with your symptoms.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.


Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 3/14/2009 3:53 PM (GMT -7)   
Hi and Welcome ...

Some of the things that you wrote about were exactly what I had going on... It took two years for me to get a DX...
I'm sorry you have had such a terrible time with DR's... that is just awful... What area of the country are you? Are you anywhere near Tulsa?
If you are, I can tell you who to go to......all the best to you....

lilbitz
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/28/2009 7:18 PM (GMT -7)   
Hey Red hang in there.I feel that sick and all my blood work is normal weird .Anyway you should look into to something called porphyria I just started researching it and found it to be very interesting.You don't have all of the classic symptoms but I think it would be worth a look .Most doctors don't know much about it because it is very rare so it is not something they would normally check for.Good Luck

NanciLee
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 3/29/2009 11:44 AM (GMT -7)   
I am worthless. I have no advise except to keep in mind that if it doesn't sound right, its probably not! These people know their stuff. I just wanted to welcome you.
 


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 3/29/2009 2:23 PM (GMT -7)   
No body is worthless and don't let anyone tell you different. By the way your advice is bang on.

Bryan
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08, NO Sjogren's 09, ?????  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg and Amitriptyline 10mg
Life is what you make of it.  Just something I try to remind myself every day.

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 3:00 AM (GMT -7)
There are a total of 2,735,216 posts in 301,284 threads.
View Active Threads


Who's Online
This forum has 151388 registered members. Please welcome our newest member, ebinease.
201 Guest(s), 2 Registered Member(s) are currently online.  Details
clo2014, NiceCupOfTea


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer