Hi all,
I would really appreciate if you could take a few minutes to read this. I’d be grateful for any advice / answers / support. I’m at the end of my tether and struggling to see how I can get out of this.
I am hoping you can help me in judging if this is TMS (i’m struggling to see it, personally due to the number of symptoms and their patterns). However, I would be grateful for your thoughts.
I’m 28 years old and have been living with chronic pain and many other symptoms gradually increasing since November 2013. I was diagnosed with Multiple Sclerosis thirteen years ago when I was around fifteen. In terms of symptoms NONE of my new symptoms I have experienced since the end of 2013 were ever previously experienced.
Also, I have had no progression in my MS on any MRI scans since around nine years ago (roughly 2009/2010 since my last new lesion). So my catalogue of new symptoms it would appear to me (and my neurologist) are NOT MS related.
Since November 2013 I have experienced many new symptoms (FULL SYMPTOMS AT BOTTOM OF POST). Symptoms continue to increase.
NB. I also wonder if the insertion of metal coils for a varicocele embolization in May 2013 - soon before health decline could have been a ‘trigger’ - especailly with my history of autoimmune issues. I also had a flu jab/shot in October 2013 very soon before my health began to decline and continues to decline. I feel one of them could have been a ‘cause’. Or the medication I take (Tysabri - an immunosuppressant)
Summary of the findings from some investigations :
Mental health wise recently diagnosed with :
- “Personality Disorder unspecified (moderate with anxious, borderline, anankastic and paranoid components)”
- “Somatisation Disorder”
- “Social phobia”
- “Reaction to severe stress, unspecified.”
- “Recurrent Depressive Disorder”
Physical health, diagnosed with :
- Herniated disc (L5/S1) and disc bulge in rest of lumbar spine
- “Small hemi-pelvis” (one side smaller than the other
- Rotated / twisted sacrum
- In addition to this, Walking feels uncomfortable - in addition to sciatic pain / dead / heavy legs also feel not steady / rotated / squint. - one of my worse symptoms - stopped me from exercise, etc
- Raised CK levels in blood (sign of muscle damage)
- “Tight urinary sphincter”
- Varicocele
- Flat feet
- Very low testosterone (continuously)
- Skin biopsy - “chronic inflammation and early dermal scarring”
- Varicose veins - legs
- MS (as mentioned above but no progression for many years)
- TMJ tightness
- Muscle biopsy
My muscle biopsy, showed an “increase in internal nuclei…in approximately half of the fibres of the muscle biopsy sample”. So my neurologist told me : “In view of your previous history and the findings of your previous muscle biopsy of internal nucleation, the Pathologist has raised the possibility of limb-girdle muscular dystrophy or myotonic muscular dystrophy.”
I was sent to Genetics and asked to collect family history of muscle disease (of which there isn’t any in my family). She told me she didn’t think I had either of the muscular dystrophies but took a blood test and asked me to provide a detailed symptom list (below). Basically, it appears nothing will be found and if that is the case I don’t know what to do next.
I have been prescribed various medication but the only medication I now take ’Tysabri’ (an immunosuppressant - since March 2010) and Vitamin D.
My most frustrating / difficult / confusing debilitating symptoms :
- feeling ‘ill’ / unwell / feeling like a recurring virus etc
- Pelvic floor pain / groin / testicular pain
- Muscle pain whole body flu like muscle pain
- Hot
- Hot heavy tired weak legs calfs in particular
- Headache
- Can’t sleep
- Flu symptoms - feel like I’m going to feint. can feel so ill it feels like I’m dying (I know that sounds extreme)
- Itch
- Nausea
- Sciatica
- Deep internal pain - source hard to pinpoint
- Restless legs
(Full symptoms below)
I have read TMBS (Sarno) and HBP (Sarno) and regularly journaled, etc but have not had much success - Not getting back to exercise due to sciatic pain / pelvic floor / leg pain / etc / varicocele heaviness I am finding really hard.
To be honest, I can’t live like this and I just need a bit of hope. However, I would appreciate your honestly. If things don’t appear to be TMS I would appreciate that too as I am struggling to see it myself.
Thanks,
Stuart
P.S (I'm from the UK - uncase anyone is offering any location specific advice)
________
FULL Symptoms which I provided for Genetics appointment :
I would really appreciate if you could take a few minutes to read this. I’d be grateful for any advice / answers / support. I’m at the end of my tether and struggling to see how I can get out of this.
I am hoping you can help me in judging if this is TMS (i’m struggling to see it, personally due to the number of symptoms and their patterns). However, I would be grateful for your thoughts.
I’m 28 years old and have been living with chronic pain and many other symptoms gradually increasing since November 2013. I was diagnosed with Multiple Sclerosis thirteen years ago when I was around fifteen. In terms of symptoms NONE of my new symptoms I have experienced since the end of 2013 were ever previously experienced.
Also, I have had no progression in my MS on any MRI scans since around nine years ago (roughly 2009/2010 since my last new lesion). So my catalogue of new symptoms it would appear to me (and my neurologist) are NOT MS related.
Since November 2013 I have experienced many new symptoms (FULL SYMPTOMS AT BOTTOM OF POST). Symptoms continue to increase.
NB. I also wonder if the insertion of metal coils for a varicocele embolization in May 2013 - soon before health decline could have been a ‘trigger’ - especailly with my history of autoimmune issues. I also had a flu jab/shot in October 2013 very soon before my health began to decline and continues to decline. I feel one of them could have been a ‘cause’. Or the medication I take (Tysabri - an immunosuppressant)
Summary of the findings from some investigations :
Mental health wise recently diagnosed with :
- “Personality Disorder unspecified (moderate with anxious, borderline, anankastic and paranoid components)”
- “Somatisation Disorder”
- “Social phobia”
- “Reaction to severe stress, unspecified.”
- “Recurrent Depressive Disorder”
Physical health, diagnosed with :
- Herniated disc (L5/S1) and disc bulge in rest of lumbar spine
- “Small hemi-pelvis” (one side smaller than the other
- Rotated / twisted sacrum
- In addition to this, Walking feels uncomfortable - in addition to sciatic pain / dead / heavy legs also feel not steady / rotated / squint. - one of my worse symptoms - stopped me from exercise, etc
- Raised CK levels in blood (sign of muscle damage)
- “Tight urinary sphincter”
- Varicocele
- Flat feet
- Very low testosterone (continuously)
- Skin biopsy - “chronic inflammation and early dermal scarring”
- Varicose veins - legs
- MS (as mentioned above but no progression for many years)
- TMJ tightness
- Muscle biopsy
My muscle biopsy, showed an “increase in internal nuclei…in approximately half of the fibres of the muscle biopsy sample”. So my neurologist told me : “In view of your previous history and the findings of your previous muscle biopsy of internal nucleation, the Pathologist has raised the possibility of limb-girdle muscular dystrophy or myotonic muscular dystrophy.”
I was sent to Genetics and asked to collect family history of muscle disease (of which there isn’t any in my family). She told me she didn’t think I had either of the muscular dystrophies but took a blood test and asked me to provide a detailed symptom list (below). Basically, it appears nothing will be found and if that is the case I don’t know what to do next.
I have been prescribed various medication but the only medication I now take ’Tysabri’ (an immunosuppressant - since March 2010) and Vitamin D.
My most frustrating / difficult / confusing debilitating symptoms :
- feeling ‘ill’ / unwell / feeling like a recurring virus etc
- Pelvic floor pain / groin / testicular pain
- Muscle pain whole body flu like muscle pain
- Hot
- Hot heavy tired weak legs calfs in particular
- Headache
- Can’t sleep
- Flu symptoms - feel like I’m going to feint. can feel so ill it feels like I’m dying (I know that sounds extreme)
- Itch
- Nausea
- Sciatica
- Deep internal pain - source hard to pinpoint
- Restless legs
(Full symptoms below)
I have read TMBS (Sarno) and HBP (Sarno) and regularly journaled, etc but have not had much success - Not getting back to exercise due to sciatic pain / pelvic floor / leg pain / etc / varicocele heaviness I am finding really hard.
To be honest, I can’t live like this and I just need a bit of hope. However, I would appreciate your honestly. If things don’t appear to be TMS I would appreciate that too as I am struggling to see it myself.
Thanks,
Stuart
P.S (I'm from the UK - uncase anyone is offering any location specific advice)
________
FULL Symptoms which I provided for Genetics appointment :
- Fatigue (can be significant)
- Poor sleep – waking
- fatigue / pain – Mornings in particular
- Sweaty
- Nausea
- Flu like symptoms / ‘ill’ / Fuzzy head / cotton wool / Cog fog / poor memory / concentration / fatigue / run down / irritable / extreme moodiness / headache Very hot / very cold alternating
- Hair loss – front – big increase in past 3-4 years
- ‘Pressure’ in face / nose / (like wearing a mask). Heavy / ‘tired’ face/skin Sore, tired eyes – sometimes poor vision – blurred / quite ‘dark’
- Teeth – tightness – (a feeling like after eating sugary food/drinks) Pain / tightness – jaw / under ear
- left teeth from back to front
- Mouth spots / Mouth ulcers – tongue / gums Throat pain lower
- Nausea
- Extreme Thirst / dry mouth
- Stiff neck / pain / lifting head from pillow – effort / shoulder pain / heavy weight around neck / stiff tired muscles
- Chest – clearing throat / poor swallowing – stuck feeling between throat / stomach – thirst (trying to ‘wash down’ food that feels stuck) – pain – thumped feeling – strangling feeling / shortness of breath upper back pain / Poor digestion
- Pain internal chest / knife / needle / pressure. Ill.
- Short breath. Arms heavy internal. Pain stabbing / needle
- Ribs – pain – muscles between ribs
- pain / tight / ‘tired’ muscles around chest /collar / shoulders / pecs into > heavy / ache arms. ‘Restless’ arms
- Pain / ‘heat’ in ‘Liver’ area – sensation of ‘liver’ (or something) ‘sticking’ to my ribs – swollen feeling. Internal pain – squeezing
- Occasional palpitations – fluttering
- Hands – dropping things more frequently – Some difficulties undoing buttons / bottles etc
- Upper back tightness / thoracic
- Rhomboids / trapizeus / neck / hot knife pain
- Stomach pain – alternating constipation / diarrhoea. cramp / pain. Extreme Hunger after BM. Fullness. Occasional BM very soon after eating.
- Pain / weak / fatigue feeling around whole pelvis muscles – don’t feel ‘stable’ Deep stiffness / pain / hard getting out of bath for eg. Heavy
- Pressure around pelvic – like a corset around my waist / pelvis groin. Pain/tightness in side of hips / pelvis
- Lower abdom / pelvic area pain – both sides . Weak / sore / ’tired’ perineum / pelvic floor
- Testicular / scrotal pain / heaviness. Elastic band around groin feeling. Testicular heaviness pain – deep abdominal
- Discomfort penile – ‘squeezing’
- Varicocele heaviness
- Testicular pain / inner legs down to inner feet
- Lower abdominal /pelvis / tired / weakness / stiff
- Inner thighs heavy ache. Tight up middle – pressure / squeezed internal central
- Pain throughout – from Pelvic floor / t pain / leg pain up to whole body muscle / bone pain. Muscle ache all over – legs etc
- Morning. Perineum into lower abdominal / pelvis / inner legs knees hot inner feet.
- Urgency / frequency but also shyness night – battle to pee. Urgent after bending down? Waking in night for pee but not much volume.
- Rectum – muscle heavy / ‘itch’ / tight / twitch / pulse / internal. Heavy Anus / perineum night golf ball. Restless perineum internal ticklely
- Penile skin changes
- Back pain (lower) / stiffness
- Lumbar spine – compressed carton
- SI joint pain.
- Sciatica both sides tightness glutes / hamstring – wrapping pain. Pain / tightness / weakness in glutes
- Pain / tightness sacrum – radiating pain
- Both – Heavy / tight / exploding / hot
- Feet and almost all legs / compression sock. tired / weak feeling.
- Restless legs. Uncomfortable, Always moving
- Legs – tight / ‘dead’ / heavy / twitching / cramping / deep pain / sensation of feeling like they will explode. Cold / sticky.
- Tightness behind knee / around ankles / around knees / quads /top of feet Weekend – couldn’t feel legs – paralyse.
- Heavy / tight dead legs. Heavy aching legs tired knees
- Deep calf pain / weakness / feel weaker / smaller
- IT band / behind knee
- Like wearing leg braces
- Cold (or hot?) water sensation running through legs Hot heavy legs & feet after walking
- Pain outer ankles / peroneal tendons Pain top of foot deep pain
- Pain inner in-step
- Under foot / sole pain
- Foot drop Fungal nails
