Hi,
I have been battling to get my brain scan results for over five weeks. I felt forced to go to PALS and an appointments resolutions procedure service for help. Today I was called by a receptionist to say the neurologist had emailed her (obviously nudged by PALS) and the scan is normal. There was no further information such as why it had taken five weeks to tell me that! I’ve only met her once—she arrived an hour late for that appointment without an apology so I should have seen that as a warning.
I’m not dancing on the ceiling with relief because I struggle to walk! I haven’t felt my feet fully since August when I woke up with the sensation that there was glass in the soles of my feet. I’ve lived with constant pins and needles in my legs; I can’t work; I can’t drive; I struggle to lift a glass from the table at times; I have numbness in my fingers and am struggling to type this due to the shooting electricity down my arms. I can’t do yoga which I used to do to a high level for 24 years; I can’t swim more than two lengths before it feels like I’m kicking concrete not water. I nearly passed out with the pain in my ribs again last week which was super scary… I won’t go on with the horror stories just to say that I’m frightened, I’m desperate and the experience so far with the neurologist has left me feeling very isolated.
The only hope I’m clinging to so that I can get to the bottom of why these symptoms won’t go away is an appointment for a nerve function test which the receptionist said she would try to chase for me. I’m so fatigued that I’m not sure I’ve got any more fight in me to get them to take me seriously.
I’ve been given amitriptyline for the nerve pain which I take at night (half-doze) as a last resort because it leaves me zombified for the following day. My life (which was very active) has turned into an existence. I’ve found this site helpful because I relate to so many of the stories shared on here.
I wish you all well.
Hello Kitten.
Oh sweetheart, I identify with so much of what you are going through.
I’ve had PPMS 24 years and it took 22 years to get diagnosed! I saw 16 neurologists locally, at 3 different hospitals.
Like you, one neuro told me I should be happy as there was no sign of demylination on my scans…yeh…really, when you are sat in a wheelchair and wet yourself?
I finally got my diagnosis in Liverpool…miles away from home, but it was worth it.
I found amitriptyline to be a wonderful painkiller…again like you, I felt I was sitting on broken glass and the drug zapped it at 75mg at night. No side effects for me.
I’m now trying tizanidine for a very tight muscle problem in my left arm and hand. Botox is being tried too.
My hubby and 2 carers deal with all my personal care, outings, cooking, laundry etc. I just sit looking pretty (ha!)all day.
love Boudsxx
Bouds,
Thank you so much for taking the time to respond: it means a lot.
I’m sorry to hear about how long it took you to get diagnosed and the symptoms you have been living with for so long. I’m glad you have a supportive husband and some effective pain relief and care.
I was called by my neurologist’s new secretary yesterday to tell me she will be writing to me tomorrow. I’m praying there will be more tests planned. I’ll keep pushing for some answers, whatever they may be.
Wishing you all good things,
Kittengn
Hi
I too have very similar issues with numbness and difficulty walking, which is getting worse each day.
My scans are not showing anything which must be good news. My Neurologists are not really offering any explanation other than FND or a reaction to the covid vaccine.
I was very interested/worried in what Bouds said about 22 years to get a diagnosis,… what were they telling you was the problem in the previous years??
Hi Scorpion, I was told it was probably PPMS…then told it was HSP (hereditary spastic paraparesis).
For years I had a big fat ? on my head! It was awful!
Boudsx
I am not sure if I have MS, reading the results of the MRI and google them tells me that I am at the beginning of MS. I am very lucky to have the help of a physician who has given me exercises, specially balance exercises… and breathing exercises. One thing that he suggested, was to listen to progressive relaxation in You Tube. I make them everyday with a nice lady telling me how to relax, slowly. One has to try a few progressive relaxation videos until one finds the one that suit one’s personality/needs… I feel much better and I walk better and my aches and pains have improved 85%. I hope all that helps… No tablets… only Vit D and B12 if one need it. I have been taking Vit D for years. VitD3.
Hi Spanish,
It’s great you have a sympathetic physician. I’ve bern meditating regulatly for 25 years and it’s helped me through much of this nightmare.
My nerve conduction study was normal so my neurologist has palmed me off with FND and advised me to look at a website - very informative and full of case studies. Non of which relate to my experience!!
I’ve asked my GP for a spinal MRI (I’ve only had a brain scan) and have been denied it. That’s that then.
My only hope is that I wake up soon from this bad dream…
Hope things are better for you and everyone else on here who’s looking for answers.