Hi
I am Parv from India. I have the same symptoms for last 1 month and changed 4 MBBS (physician) docs by now but no doc could diagnosed it till now and put me on different pain killers and antibiotics. I am tired of this pain now..and your post show me a ray of hope to me. can you pls let me know what illness is this and how to cure it. my email ID is ***@****.
Thank you so much. wish all the ppl over here who are suffering from the same the right diagnosis, right medicine and fastest recovery.
Thank you
Regards
Parv.
My symptoms occurred slowly over a few years unbeknownst to me, and after a lot of testing, extreme pain I was finally diagnosed with Guillain Barre Syndrome which I completely recovered from but gave me CIDP which is Chronic Inflammatory Demyelinating Polyneuropathy; a disease that stems from a combination of things. Lyme disease, Flu vaccine and the actual flu. I pray that this is not the case for you or any of the other folks that have posted here. My symptoms started out as fatigue, depression, weakness in my limbs, low grade fever, headaches. Things progressed rapidly and I became paralized from my neck down and had to have a tracheotomy and almost died 3 times due to respiratory failure. Please have the doctors do a spinal tap, it is a much better test and more definitive. The pain was throught my entire body but not in any one spot but the intensity was extreme.
I know this posting is dated but ditto everything you said - but for me. I ended up with lyme disease and lupus. Started 3 years ago and I was a happy healthy 40 year old 5'6" 120 lbs. Now I've turned into a miserable mess weighing about 180-190. I hope you have a better outcome than me so far.
I found your post while looking for some other disease which may be causing what I have that my be treatable. Good luck to you all.
I know this entry it old, but I randomly started getting ridiculous pain in my ankles and elbows when I wake up, and upon reading this my jaw dropped. The rash, the heartburn, everything... Please tell me if u every figured out what was wrong..
Please keep me updated on what the doctors say to you, my email is amzpromotions.***@**** I'm not a spammer or anything I have word for word the same issues you had, only I also had chest congestion sinus drainage and a raw throat, I'm still awaitng results from lupus testing and rheumatic fever, the doc said my wbc count is high suggesting infection but all other results normal and I'm terrified bc I can't even gather strength to bathe much less eat or drive. Please help me
I have had similar symptoms for three years; although I don't have a diagnosis yet, I would recommend a ANA test and thyroid antibody test. They are the some of the first labs that have come back abnormal for me, and can explain a lot of the symptoms.
You really need to look into Lupus.
You are not alone. I have been scouring the internet looking for answers as my wife has almost verbatim experience you have described. She had a hysterectomy and was back on her feet feeling fine in just over a week. Everything seemed fine when the wheels fell of the cart. She started with her thumb swelling up to where she couldn’t bend it. She started running fevers in the late afternoons for several days. She would come home from work and just fall apart. The swelling moved to her wrists, all her fingers, her knees and occasional back pain. I forgot to mention she had been having rash outbreaks for over a year and was taking allergy shots for about a year (that were not helping). She has gone to an arthritis specialist and he tested her and the results came back negative for rheumatoid arthritis but he tested the fluid he drained from her knee and said it tested positive for inflammation properties so he thinks its RA. She has been on steroids for several weeks now and they work containing all the symptoms but as we are reducing the dose replacing it with the other medicine the doctor states works for RA my wife is in a lot of pain and struggles to make it through the day. We have her next appointment this Tuesday and hope for a better approach. I will update you as to our progress and please keep this post going if you find out any news. My wife’s iron is low as well. Sorry for jumping around but as I am typing this things are popping in my head.
Have you ever been tested for lyme disease?
Update 2)
Sunday (the 10th) was the first day I woke up with out pain. I had some pain in my feet and knees throughout the day, but it did not last very long. The rash has not returned and neither has the fever. Today (the 11th) I have had very little pain, but some fatigue. On Saturday evening (the 9th) I did eat a huge plate of fresh salmon since my doc said my good cholesterol was low. I do not know if this is what has eased my symptoms or not, but today I have started fish oil pills.
I finally have an appointment with a rheumatologist (funny I finally got it today)! However, it isnt until Febuary 2nd. I thought about not going only because my symptoms have seemed to go away, but I am too fearful they may return! The nurse at the rheumatologists office said that my first visit would just be me going over my symptoms and then they would send me to a lab so that they can run many many tests. The rheumatologist that I am being referred to is known for figuring out "exotic" ailments even when it is not rheumatoid arthritis.
I plan to take some notes with me to the doctor to discuss several things that have been mentioned to me. I will continue to keep you all posted, and again thank you for taking the time to give your advice and voice your concerns.
Here is update 1)
I have recently had a couple of dizzy spells and the dizziness isn’t occurring when Im moving around. Once I was just standing and talking to a friend and the other I was sitting and teaching. Yesterday morning on my way to work I felt some pain in the left side of my chest. I pulled off the road and the pain subsided after about a minute or so. I decided then to go ahead and drive to the doctor rather than to work. The doctor was not in yet, but the nurse took my blood pressure and it was 102/60. She said that she would notify the doctor when he arrived. The doctor called me shortly after I got to work and told me that he was still in the process of getting me an appointment with a rheumatologist (as there is only 3 within a 100 miles of me); however, he would do everything possible to get in touch with one on Monday and get me an appointment scheduled as soon as possible. He said that if over the weekend my dizzy spells got any worse or more frequent or if I had chest pains again to immediately go to the ER. I am beginning to not like my doctor as much as before. I have gotten some great recommendations for a general doctor at another hospital; however, he is about an hour away.
Also, I do not know if this is a related symptom, but I have been having some heart burn. I do not normally have heart burn and the last time I remember having it I was pregnant (nearly 3 yrs ago). The heart burn has been present even when I haven’t eaten anything that would normally give me heart burn (like salad with ranch dressing).
Today (01/10/09) and yesterday my I have felt about the same (usually my symptoms have differed from day to day). My fatigue has lifted some, but my knees are still stiff and somewhat painful, my shins still ache (almost like growing pains or slight shin splits), and my feet still hurt. My foot pain is mostly stiffness, my heels are slightly painful, and my arches are sore. I have been on my feet very little lately mostly because of the pain. Even at my job they have taken several measures to try and keep me in a sitting position while teaching. The pain also doesn’t seem to be any better even after sleeping through the night. The rash and low grade fever that I had has appeared to have gone away as of yesterday, and has not returned today
I followed the spondyloarthropathy link and did notice the symptoms of Reactive Arthritis and it mentions heel pain, so I may see about getting the genetic test it mentioned. As for the Celiac disease I haven’t had any real gastrointestinal or digestive issues (other than the recent heart burn).
As for fifths disease, I haven’t had the red cheeks at all, and none of the children at school have had any of the symptoms. My supervisor is familiar with 5ths disease, so I asked her about it and she said that she doesn’t believe this is what Ive got. However, she mentioned she was concerned about rheumatic fever, because a month or so ago everyone seemed to get strep throat except for me. She said she was now concerned that maybe I got it and just didn’t have the symptoms of strep which if untreated can lead to rheumatic fever.
Upon going over my test results which I will post below, I noticed that I am only 0.01 below testing positive for Lyme disease. So this is still a definite concern for me.
I truly appreciate you all taking the time to respond to my post, and I will continue to keep you updated.
TEST RESULTS
Total Cholesterol 111mg/dL –Normal goal of less than 200
Triglycerides 120 mg/dL –Normal goal of less than 150
HDL 28 mg/dL –Normal goal of 55 or higher
VLDL 24 mg/dL –Normal 0-40
LDL 59 mg/dL –Normal is less than 100
Glucose (Glu) 90 mg/dL –Normal 65 to 99
Sodium (Na) 136 mmol/L Normal 136 to 148
Blood Urea Nitrogen (BUN) 12 mg/dL –Normal 5 to 26
Creatinine (Creat) 0.69 mg/dL –Normal 0.57 to 1.0
BUN/Creatinine Ratio 17 –Normal 10.01 to 20.99
Potassium (K) 3.7 mmol/L –Normal 3.5 to 5.5
Phosphate (PO4) 2.8 mg/dL –Normal 2.5 to 4.5
Chloride (CI) 100 mmol/L –Normal 96 to 109
Calcium (CA) 8.9 mg/dL –Normal 8.5 to 10.6
Total Protein 6.3 g/dL –Normal 6.0 to 8.5
Albumin 3.8 g/dL –Normal 3.5 to 5.5
Globulin 2.5 g/dL –Normal 1.5 to 4.5
Albumin/Globulin Ratio 1.5 –Normal is 1.11-2.5
Alk Phos 71 IU/L –Normal 25 to 150
LDH 199 IU/L –Normal 100 to 250
AST (SGOT) 14 IU/L –Normal 0 to 40
ALT (SGPT) 19 IU/L –Normal 0 to 40
GGT 13 IU/L –Normal 0 to 66
TBILI 0.2 mg/dL –Normal 0 to 0.5
Glom Filt Rate (eGFR) 59.01 mL/min –Normal 59 to 129
Lyme Disease (IgG/IgM Ab) 0.9 index –Normal 0 to 0.9
Lyme Disease (Ab Quant IgM) 0.9 Index –Normal 0 to 0.9
Thyroid Stimulating Hormone (TSH) 1.7 uIU/mL –Normal 0.35 to 5.5
White Blood Cells (WBC) 8.8 X 10-3/uL -Normal 4.0 and 10.5
Red Blood Cells (RBC) 4.23 x 10-6/ul –Normal 3.8 to 5.1
Hemoglobin (HGB) 13.6 g/dL –Normal 11.5 to 15.0
Hematocrit (HCT) 39.8 % -Normal 34 to 44
Mean Corpuscular Volume (MCV) 94 fl –Normal 80 to 100
Mean Corpuscular Hemoglobin (MCH) 32.3 pg –Normal 27 to 34
Mean Corpuscular Hemoglobin Concentration (MCHC) 34.3 g/dL –Normal 30 to 36
Red Blood Cell Distribution (RDW) 12.8% -Normal 11.7 to 15.01
Platelets (PLT) 279 X 10-3/uL –Normal 140 to 415
Neutrophils 78 % -Normal 40 to 74.01
Lymphs 15 % -Normal 14 to 46.01
Monocytes 5 % -Normal 4 to 13.01
Eosinophils (Eos) 2 % -Normal 0 to 7.01
Basophils (Basos) 0 % -Normal 0 to 3.01
Uric Acid Level 3.9 ug/dL –Normal 2.4 to 8.2
Rheumatoid Arthritis 6.9 IU/ml –Normal 0 to 14
Sedimentation Rate (ESR or “sed rate”) 4 mm/hr –Normal 0 to 21
GENERAL MEDICAL INFO
Blood Pressure
01/09/09 – 102/60
01/06/09 -128/82
12/29/08 -102/59
08/26/08 -116/74
05/12/08 -116/75
Body Mass Index (BMI)
12/29/08 -23.1
08/26/08 -21.1
05/12/08 -19.5
Weight
12/29/08 -126 lbs
08/26/08 -119 lbs
05/12/08 -110 lbs
I believe that my weight gain is most likely contributed to the fact that I have had much less stress in my life, since I am the type to unconsiously not eat when under stress.
One other thing to consider could be Lyme disease even if the test is negative. That is commonly the case. Any chance of a tick bit in the recent past?
Val
What is Lupus?
The immune system is designed to attack foreign substances in the body. If you have lupus, something goes wrong with your immune system and it attacks healthy cells and tissues. This can damage many parts of the body such as the:
Joints
Skin
Kidneys
Heart
Lungs
Blood vessels
Brain
There are many kinds of lupus. The most common type, systemic lupus erythematosus, affects many parts of the body. Other types of lupus are:
Discoid lupus erythematosus - causes a skin rash that doesn't go away
Subacute cutaneous lupus erythematosus - causes skin sores on parts of the body exposed to sun
Drug-induced lupus - can be caused by medications
I think a rheumatologist is the right step,,,sounds like rheumatoid arthristis or darn it the disease that causes the butterfky like rash,,cant think of it now will resurch and get back to you