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Timien

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    Female
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    Rtd Teacher.

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  1. Hi Ronald. Thank you so very much for taking your time to look at my question. It is very much apprecited. I will try and answer your questions and update a little more info and you will see that your time has not been wasted and I can only thank you. For 30+ years I have followed the pattern of a person with MS although have been told that as my Brain MRI has no lessions I coulnt possibly have MS. My problems seriously began in 1994 when I started to get severe pain in my eyes and my eyesight kept going as in double vision if I held my hand or anything else less than 15-20cms from the end of my nose but past this distance everything was clear and singular. After lots of eye tests and a visit to the hospital for checks they diagnosed me as being Hyper-light sensitive. An MRI of the top of the neck revealed that there wasnt much room for the Spinal cord and Spinal fluid but that was all that was said. If I jump forward a few years to 1997-1998 I was having huge problems with numbness in my left arm in the night and on waking my arm would be a complete dead weight. I had a severe period of paralysis in my leg for 6 weeks woke up one morning and it was paralysed no explanation it took 6 weeks to clear. I then started getting rashes on my arms and legs that would slowly disappear over the day. I had extreme exhaustion my weight again went up and I was getting fed-up. Since a child I had always struggled with my weight. In 2000 they questionmakred Fibromyalgia but never formally gave me the diagnosis. 2001, I was struggling and now my hearing was playing up ringing in my ears and the pain in my spine was getting worse and I was again in a very bad place health wise and I kept asking if I was Diabetic but I was told NO, I aksed if I had MS, I was told NO everything kept being blamed on me having an Autistic son or because I was bringing up my family on my own. I had a few more episodes of paralysis and days where I kept just crashing out in the middle of conversations and would come to several hours later. (Not fits or anything it was though someone just switched off a switch). At times I found it hard to find words everyone just thought it was amusing. I continually suffered from thrush and couldnt break the cycle. By 2006 I was doing what I could having had almost 12 months off of work as I just could'nt function properly. Then I started working part-time again and then fulltime and by 2010 I was having severe headaches and they mentioned Pernacsious anemia and gave me B6 and B12 tables but werent interested in following anything up. By 2012 I was seriously ill. was struggling to breathe, a lung function test with the computer showed I only had 70% lung capacity. I could barely walk, now needed crutches continually and was having daily paralysis and could no longer hold any conversations as at the most I could only put three words together then I'd have to start my sentence all over again but just couldnt get passed three words. The frustration was immense! All the time they kept telling me the problem was psychological and they refused to send me to see any Cosnultant. The paralysis - let me explain - I'd get up, shower, have breakfast go out for a short walk with the aid of my crutches, as without them I couldnt walk at all, we'd go for a 20minute walk and then have a cup of coffee and a natter and then when I'd go to stand up to go home again my legs wouldnt function. There was nothing. I'd have NO functionability until the following morning. This has now been described to me as extreme Muscle fatigue but it went on for 2 years til I couldnt even manage that and was issued a wheelchair. All the time being told it was purely psychological. At this point in 2012 I demanded that they take a blood test which they did and a finger prick test and 30 minutes later they were phoning me asking me to return to the surgery as my blood sugar levels were off the scale. Three weeks later I was told I was insulin resistant and type 2 diabetic. They told me it was nothing and gave me half a metformin tablet daily and told me to come back in 12 months. Needless to say 12 months later my Diabetes was of the scale!! I then returned to the UK and started to see several Consultants who I asked about MS as I could tick the box of all MS basic problems and when I was asked my problems everyone said "Classic MS" but the brain MRI was still not showing lessions so no diganosis. By now its 2014 and I was being sent to the Fibromyalgia Specialist who said "You dont have Fibromyalgia you have an Autoimmune illness you can see that just by looking at your face." Yes my face always looks as though I have caught the sun. Some days the pinkness has me resembling a raspberry or a tomato. My blood pressure was now also off the scale 186/98 and I am diagnosed with Hypertension. I am then sent to the Muscle Clinic and several otherClinics and it went like this "Name? Timien, Age? 49, Date of Birth? --/--/-- etc then they would say "Discharged" and I'd say what do you mean you havent done anything!! In the end they wrote a letter to GP suggesting that they ran a Hepititis Serology A;B;C;D;E etc. My GP's answer to me when I showed him the letter was "Could you have Hepititis" I answered "how would I know Im just the patient" Needless to say no Hepititis Serology tests were carried out. Other Consultants wrote "No movement in the Lumbar Spine, No movement in the Cervical Spine therefore must have Chronic Fatigue Syndrome! Honestly if you saw some of things they have written you'd be horrified! I was sent to a Rehabilitation Centre due to the near paralysis of my legs and they MRI'd my whole Spine reporting it was normal but two years later we managed to get a copy of the actual report and it was anything but normal. I have severe Foraminal Bilateral Nerve Compression on exit in C4-C7 inclusive and Severe Disc degeneration, the Spinal fluid is cut off at multiple levels and there is also quite severe damage in the Thoraxic Spine and Lumbar Spine. But accoding to my GP this is all purely in my head and this is quite normal!! In 2015, after more dismissive Consultants and Clinics I saw a Consultant who was horrified at the state of my Body and in 2016 started a year of many more tests: - MRI's showed that they couldnt take a Muscle biopsy as it wouldnt be viable and my thigh muscles were too marbled. The MRI of my neck showed the extent of the Bi-lateral Nerve Root Compression on Exit of the nerves through the formamina C4-C7 but I have been unable to get a referrral to the Spondylitis department or the Stenosis Department again being told this is nothing and psychological by my GP despite the Consultant saying it is serious and needs monitoring and physiotherapy input! The Lumbar Puncture revealed that there were Oligoclonal Bands in the Spinal Fluid and the Blood Serum which put me in the group of Guillan Barr Syndrom, etc but they keep saying its not likely to be MS. But no further tests carried out. In the Autumn 2016 they carried out Autonomic Nervous Function Tests and here it showed that I had major problems with Vagal Nerve damage and my breathing was too low for my heart rate. They also question marked PoTS. Again nothing has been done this is ALL only psychological!! The SSEP's and the EMG's showed there were small problems but again ALL results ignored by GP. And the Lymphocyte blood tests taken in November 2016 you have already seen. I was rushed into hospital due to my Blood Pressure being 226/116 at least 6 times in the Autmn each time just discharged again. They told me NOT to bother them again it was all ONLY Psychological. Eventually they said it was a Muscular Skeletal problem. The pain in my Spine was so severe the week I posted my posting here May 2017, I contacted a "Well respected" Rheumatologist who when he saw me said that he'd never seen a patient with so much inflammation in their body. He put me on a small anti-inflammatory steroid for two weeks to see what would happen and the change in the pain levels and my abiltity to walk within a few days was amazing! After two weeks the difference when I saw him he said it was like I was a different person. I am not diagnosed or cured but at least I have now fianlly been able to establish that even though the Lumbar Puncture showed a chronic Inflammatory issue I now have a Rheumatoligsts backing up and demanding that my GP starts to do something to help me! I also now have a new Physiotherapist who was astounded at the severe lack of muscle strength and I now have muscle wastage and shrinkage clearly visible in both legs and arms which isnt good. I am to see her every other week and the week in between I am to sart working with a limb therapist. I am also to see a new Neurologist to see if we can look at me and see what to assess given all the Nerve damage showing up in EMG's SSEP's and Autonomic Nerve Function Tests. Diagnosis at present are so many see below but no core diagnosis. No one wants to open my Journal!! Apparently just picking it up gives them ALL a headache! In 2010 at a Allergy clinic I tested allergic to ALL alcohol. Other than between 18-20 years of age like most teenagers I would have a glass of wine when out at a restaurant but for the past 27 years have barely drunk any alcohol and I am being very truthful, I was a single mum living in a country where there was zero tolerance for alcohol and driving and my job involved a lot of driving plus it wasnt right being a single Mum and I couldnt afford it anyway. Everyone laughs at me as I am always drinking Green Tea or plain water. I also have a lot of food allergies too. The blood tests also show that the Ferritin levels were 254 and this is high in a post menopausal female as it should only be maximum 150. I have asked for further Iron tests to be carried out, but my GP told me I was derranged and attention seeking! I have now changed GP Current Diagnosis on my file are: 1. ME/Fibromyalgia 2.Diabetes Type 2, 3. Hypertension, 4. IBS, 5.Hyper-Light sensitivity 6. Back-ground Eye Retinopathy, 7. Pain in 50/54 Places in the Body, 8. Arthritis – Moderate in BOTH Hips, 9. Rosacea, 10. Diverticulitis – Severe! 11. Cervical Radiculopathy C4, 5, 6, 7 to C8 Bilateral – NERVE ROOT Compression due to Foraminal narrowing on EXIT. 12. Cervical Spinal Disc Damage multiple levels – wear and tear arthritis 13. Thoracic Spinal Damage in multiple levels – wear and tear arthritis 14. Lumbar Spine Damage – wear and tear arthritis 15. Autonomic Neuropathy 16. Postural Orthostatic Tachycardia Syndrome - 17. Carotid Artery Stenosis 50% - caused by soft lipid at the midpoint of Carotid Artery branching right side 18. Chronic Inflammatory Disease – Shown by Lumbar Puncture but not yet named – further testing required 19. Extreme Marbling of Thigh Muscles – Unknown cause but causes extreme weakness of leg muscles 20. Excessive Ferritin Levels 254 - post menopausal should only be max 150. 21. White Blood Cell Lymphocyte - Highly elevated showing Chronic Disease referred to as Lymphocytosis 22. Pelvis, Hips, Legs, Knees and Feet all turned INWARDS - causing extreme pain and difficulty in walking. 23. Multiple Food, Drink, Additive and Environmental Allergies 24. Stroke prevention medication due to family history. All I want at the end of the DAY is the right diagnosis and the right treatment. Sadly I havent been able to work for 5 years and I am hating it!! Im very well educated, have a varied background and previously been a language teacher for 25 plus years! Thanks again for your time and any furter suggestions I am open to them! My main concern was the Bood tests as not even my Consultant knew what they meant and I no longer know which follow up tests to ask for. I will keep everyone here updated. Any other help or input I am extremely grateful for! Wishing you a wonderful day.
  2. Hi Malcolm. Thanks no one has mentioned that before will keep it in store and give it a go. Much appreciated.
  3. Hi. I'm new here but was wondering if anyone can help me understand the following Lymphocyte Subset results as my consultant doesnt know what it means and my GP wont take it seriously and I'm fed up with being in severe pain with muscle weakness and a body that doesnt function on-going for 5 years with no help. I am a teetotaller and DO NOT drink ANY alcohol as I am allergic to it. All other tests in series ie FBC etc are in normal ranges I really do need help in understanding the following, where to go and what to do. Thanks. LYMPHOCYTE SUBSETS (TBNK) Type Result Range CD4% 63 H (28-57%) CD8 417 U (200-900 cells/uL) CD3 2006 U (700-2100 cells/uL) NK CELLS 66 L (90-600 cells/uL) CD4 CELLS 1559 H (300-1400 cells/ul) B Cells Absol 352 U (100-500 cells/ul) B Cells % 14 U (6-19%) NK% 2 L (7-31%) CD3% 81 U (55-83%) LSUM 2424.0 U Biochemistry GGT 168 H Full Blood Count MCV 97.9 H (77.0-95.0fl) ESR 21 H (1-15mm/hr) CR Protein 9.7 H (<5mg/L) Ferritin 254 H (1-150 post menopausal) Lumbar Puncture – Oligoclonal Bands in Spinal Fluid and Blood Serum in Result Band Category 2:
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