Hello everyone,
I’ve joined medhelp literally yesterday in the hope I might get more of an idea what is going on with my body. Its been almost 1 year of hell I’ve been through.. Literally my new years resolution is to get to the bottom of my health issues & starting “living” once again.
I’ve been to Neurologists, General Practitioners, Infectious Disease Specialist, tried Chinese Medicine, & I am now seeing a Physician (Oncologist/Haematologist) who has made some progress but I still haven’t hit the nail in the wood in trying to identify what the heck is going on inside me & how to treat it. . I will summarize as much as I can in order to get straight to the facts without making this message tedious & boring to read for people to read
Current state:
Around June in 2016 I started developing a weird feeling on my knees in that every time I applied pressure on the skin I felt a burning sensation (Like mild sunburn) on my knees.. During this time I also had a a high level of fatigue going on that was consistent in nature. I went to the Doctor at the time.. They ran some general blood tests FBE & LFTs which all came back in range & normal. The skin burning sensation spread to the torso & then arms & feets & hands.. This resulted in consecutive trips to the GP. He ran a whole swag of tests & at around very late August CMV antibody tests (IGM) came back as positive. The GP assumed my symptoms that began in June were related to the CMV which in turn he referred me to infectious disease expert. They run about 16 tests all up. I will articulate on most of the tests at the end, but of key note at this point in time was that a CMV PCR test was run & I had a viral load that shocked the Specialist in that he was surprised at the level it was at. Again attempting to concise this, 4-5 weeks later the same CMV PCR test was run & the viral load was undetectable but yet the constant fatigue & skin burning sensation was worse & to boot I started having Fasciculations occurring all over the body. The Infectious disease specialist stated that Ive I am not better in 3 months time he will run a CMV PCR test on my spinal fluid to see if the virus is detectable in there.
Note: In an attempt to condense this, prior to September (When CMV was diagnosed by the GP) I was referred to a Neurologist. They undertook an MRI & EMG together with some blood tests. Every test the Neurologist ran came back perfectly normal (Including MRI)
Current state:
I am seeing a Physician, who also initially ran a heap of blood work. A fair few of the tests were the same test the Infectious disease Speciialst undertook as well as the GP
Concised list & results:
Lymphocyte Surface Markers – Elevated CD8 Suppressor T-Cells elevated slightly or borderline in range on high side (Test was run 3 times) CD8/CD4 Ratio was borderline normal 2 times & abnormal 1 other time
Serum Flow Cytometry: Normal result. Conclusion comment: No Abnormal Lymphoid population detected
Protein Studies: slightly Elevated IGG1
Anti-Nuclear Antibodies (ANA): 1:80 Speckled Test was run during CMV outbreak in September & in late November with same result
DNA Antibodies (Serum) Anti-DNA (ds DNA) by FARR RIA: Result: 1 IU/ml Reference (Normal < 7 IU/ml)
Autoantibodies Extractable Nuclear Antigens (Serum):
Anti (U1) RNP: Negative
Anti Sm: Negative
Anti SSA (RO): Negative
Anti Ro52: Negative
Anti SSB (La): Negative
Anti scl 70: Negative
Thyroid Function tests: TSH: 1.41 mU/L (Reference 0.5-5.5)
C-Reactive Protein : <1 (Reference <5)
Cytoplasmic-ANCA: (C-ANCA) – Negative
Perinuclear-ANCA: (P-ANCA) – Negative
Serum Protein investigation (Electropheresis): Test was run 3 times with virtually same result. Key points noted from tests below:
Monoclonal Banding was not detectable on all three tests.
Comment: Polyclonal increase in IGG. Consider Autoimmune Disease or bacterial infection.
Elevated IGG ranged from 17.1 g/L to 17.8 g/L reference (5.2 – 16.00). Other mesurements were within range
B2MGlobulin: 1.70 Reference (0.80 – 2.50) Unit mg/L
Serum Free Light Chains:
Kappa L/C 27.1H mg/L Reference (3.3 – 19.4)
Lambda L/C 21.9 mg/L Reference (5.7 – 26.3)
K/L Ratio 1.24 Reference (0.26 – 1.65)
Lactate Dehydrogenase: 178 IU/L Reference (135 – 225)
Erythocyte Sedimentation Rate (Blood) ESR (Westergreen): 5 mm/hr Reference (<15)
Serum Rheumatoid Factor: <10 kiu/L Referance: ( 50)
Vitamin b12: 420 pmol/L reference: (150-700)
In a nutshell the above shows an increased immune level with T Suppressor Cells. A polyclonal increase in IGG1. A mildy positive ANA and an increased Kappa Light Chain, but normal ratio.
The Physician thinks there is some sort of immune disorder going on. But that’s about as far as it has gotten. He has given me a 2 month course of Cimetidine. This is a H2 Antagonist which ultimately should have the effect of lowering my suppressor T-cells. Im now on my 10th day on the Cimetidine & I can’t say I feel any different whatsoever. I don’t have much confidence it will do anything. Concerned the next step will be Prednisolone quite possibly. That I am quite concerned about in regards to its side effects seeing it’s a steroid.
Other tests like Lyme Disease, Lupus etc have been tested for. As well as HIV, Hep A,B,C etc. These were done by the infectious disease specialist at the time. All were negative. What I literally just discovered today is that my Mother suffers from Hyperthyroidism & has been taking medicine for it over the last 6 years. However, my TSH is well within a normal range.
I’m sorry to all for the long message. I attempted to condense it as much as possible.. If anyone has ANY insight or thoughts on what could be going on I would be VERY VERY much appreciative. Right now the Physician Im seeing is simply using trial & error to see what works but doesn’t really have much of an idea of whats caused/causing the elevated immune response from occurring.