My partner has suffered on and off for 3+ yrs now, starting in his right hand, clasped fist and excruciating pain, went up to A&E, nothing obvious so was sent home with Voltrol and pain killers, from what I can remember it lasted a day or two.
A few months lapsed when he started getting sharp stabbing pains in his right chest/axilla area followed by numbness, pins & needles down his right arm - his dx has been costochondritis, Thoracic outlet syndrome, he had a nerve conduction study done and this apparently came back normal, he also had x-rays, blood tests&MRI's of his chest and cervical vertebrae when he was under the consultant orthopaedic and rheumatologist, nothing showed up on those. His symptoms seem to relieve themselves for a few months and he forgot the hospital, even though he still had occasional stabbing pains, numbness & burning in his chest/arm.
He dropped a few things at work, started feeling very fatigued and the numbness in his right hand got worse, as well as his range of movement in the shoulder joint, he was going down hill again. He gave up work, as he could no longer cope. He also has high blood pressure... could be due to the amount of pain the body is enduring??
We went to Stanmore to see a top peripheral nerve specialist, Prof Carlstedt, after a whole more load of MRI's which were clear and he started having new symptoms concerning his right leg, numbness, burning, skin crawling, pins & needles, mainly in the evening, Prof C referred him to a Neurologist. During an eye sight test last summer the optician pointed out that his medial peripheral vision was non-existent, and he was referred to an Ophthalmologist, in October he awoke to having lost all sight in his right eye, was rushed in as an emergency and admitted to hosp for a MRI of the brain, it was looking like MS but the MRI came back clear and even though the optic nerve is damaged (this is what it says on his notes) its not Optical neuritis (a MS trait) Since then he has also had problems with retaining urine, feeling he needs to go but nothing happening! (He’s due to see an urologist in May) Also he gets earache in his right ear a lot too. Not sure if this is a symptom too but he feels hot when its cold and cold when its hot!
We had to go and see another Neurologist as we were not satisfied that he was been discharched and told to "go and get on with your life and try to live with the pain"!!
The 2nd opinion Neuro told us it’s not typical of MS and it’s more like a lifestyle dysfunction and as referred him to a psychiatrist! We were both a bit miffed as he has been offered no further tests, and whilst I believe the emotional state can adversely affect your body and been left like this surely can only make matters worse! In many ways we are both struggling that we are both left in limbo land. He’s only 25!
Any views on his symptoms would be appreciated.
Thank you
RE: What can it be??????
I've recently met two people who have had very similar symptoms, one had it for a year and is now almost clear, one has had it for six months and gets better, relapses, etc.
Both were given the catch all diagnosis of 'a virus' but both were highly stressed when they came down with it. Both have found complementary therapies useful at relieving the symptoms, but both have/are worried about long term nerve damage and are perplexed why the top people in neurology haven't a clue what is wrong.
Sorry this isn't much help, except to reassure you that there are others in the same situation.
Sending you and your partner some healing.
RE: What can it be??????
I think that you're quite right to be miffed about psychiatric referral, but it's worth going along toat least rule it out. It's probably just because they can't as yet find a physiological cause.Your quite within your rights to put in a complaint, but suggest that you leave that until there's a proper diagnosis and even better if there's a resolution.
My immediate thoughts are that it sounds like brain rather than mind, but not a tumour as this would have showed in scans. Some conditions don't show anything on scans in the early stages.
It maybe worth Googling 'ALS' and I would ask if he's ever had an epidural to examine cerebro spinal fluid at any point?
I just wish I could come up with some more optimistic theories, but in some ways the negative tests are good news.
BTW thoracic outlet syndrome & costochondritis are completely different things and both can usually be addressed quite successfully with osteopathy.
Andrew.