I have been written off as nuts by my GP & the local ME/CFS clinic run by the NHS. Have been diagnosed with ME after seeing Dr Weir in London. Was recommended Dr Sharma who has out me on lots of different supplements which are very pricey & I feel I am gradually getting worse & worse. Does anyone have the following severe head symptoms......
CRAWLING SENSATIONS
TINGLING
SNAPPING & CRUNCHING NOISES/SENSATIONS
CONSTANT PRESSURE (like someone is squeezing my brain)
INCAPACITATING BRAIN FOG
CONSTANT LOUD TINNITUS
Also feel difficulty with breathing & swallowing.
Not feeling very confident in Dr Sharmas explanations of test results, costs rapidly increasing & his lack of patience. If anyone can recognise these symptoms or point me in a more positive direction I would be grateful.
Many Thanks
Janet
Most of the symptoms you describe might be caused by 'Sensory Neuropathies' and Sensory Phenomena, that would fit in with an ME/Autoimmune type presentation, and also undiagnosed Lyme disease or even forms of MS.
If they are disabling symptoms affecting your daily function, especially pain, then it's not unwise to rule out neurological disorders and neuropathies.
NHS can do the following with appropriate referral:
1)
Head MRI Scan, and possibly a
Spinal MRI (neuro).
2)
EEG Brain wave assessment to rule out Epilepsy, although it is not fool proof.
3)
EMG - an unpleasant procedure in which you receive little electric shocks.
Some
NHS consultants may order the following, given enough leverage/evidence you have more than 'CFS' such as shooting nerve pain in feet, transient speech slurring/feeling unreal/other neuropsych symptoms not explained by a mental health condition, paroxysymal attacks of breathing difficulty, visual defects, confusion, etc.
4) Rule out Myasthenia Gravis (Anti MAG/MUSK blood tests - not fool proof) + MS (Invasive Lumbar Puncture).
5)
A skin biopsy - cutting bits out of you, usually your foot for peripheral neuropathy that
won't show on an EMG
6) A batch of
Autoimmune blood tests, available at Oxford, NHS or Mayo Clinic (USA) Dysautonomia panel
7)
QEEG Brain mapping (private, not on NHS).
If you had 'pure' Ramsay definition ME, I would guess that from my suggestions above, the result would be:
1) Normal or shows idiopathic white 'spots' (hyperintense signals) of unknown significance.
2) Shows Drowsiness
3) Normal
4) Normal
5) Possibly abnormal if you have shooting nerve pain, cranial neuropathy, facial numbness etc
6) Possibly abnormal, probably a few will be low level positive, and the ME diagnosis stays
7) Abnormal, buy NHS can't do this test.
And that is the reason the NHS, prefer to label everyone as exercise phobic. Cheap, effective, tests are blocked and for 80% that was the correct choice. Problem is, when you're the other 25% who don't have 'CFS/ME'. but something different, or something additional you developed over time. Also 25% of millions of people with 'CFS/ME' diagnosed, is rather a lot of people to let suffer when they could have got a more accurate diagnosis.