Still no diagnosis.

[hayabusa]

The tests for Peripheral neuropathy came back negative despite the tests on both arms and both legs being done in 20 minutes flat by a rude and ignorant doctor. I had to ask for a plaster because my leg was bleeding from a needle insertion. The doctor was extremely rude and aggressive.  He was very lucky I didn't bite back. But what a way to treat a patient? 

I've got no further with the brain injury unit or the spinal unit, everytime I see anyone they want to discharge me after every visit. You have to be really determined to get any diagnosis today. It took me 4 years fighting my old GP practise to get any diagnosis of major brain and spine health multiple problems. 

My new GP in my new GP practise said the pains are just neuropathic pain and I shouldn't worry about looking for every detail with these issues he said. He was smiling as he patronised me.  It seems the possibility I may have MS just isn't important anymore.  I can just go away and not bother the NHS again.......

All these consultants keep saying there's nothing wrong, lose weight, get some exercise you'll be fine. Not a very clever way of saving the NHS money is it. 

One consultant said my motivation  was an issue on my bad days, nothing to do with variable pain or osteo arthritis or my collapsing scoliotic spine.  No, it's all about getting off your fat arse, get some exercise and get motivated. The media political propoganda is working well with alleged highly intelligent medical consultants. 

Not that I was ever a senior consultant in my own field and project managing multi million pound building contracts and a large team of other professionals, what would I know about being motivated? I also may have learned a tiny bit through working with the son of the man who owned the uk branch of the Dale Carnagie institute? 

What an unprofessional bunch of buffoons medical consultants and doctors are. The god complex didn't die off in the Victorian era after all.

My how we laughed when one senior spinal consultant claimed in grandoise poetic terms that all pain goes away eventually........ When you're dead! chimed in my partner who was getting rather frustrated at the unhelpful fellow. My how we chortled at the extravagant idiocy of the man on our way home !!!

[hayabusa]

I've been on Co codamol 30/500 mg for 15 years. I've been put on nortryptiline at night 50mg and now I've been prescribed Gabapentin 3 times a day. 

[357alldaylong]

I know you must be so frustrated.  Even though I do not know you personally,  I can understand pain. Have you looked into CBD Oil. I was reading yesterday some amazing things about it. I do not think it needs to come from any Dr. I do not think there are many Drs., that really understand nerve pain. Good luck. I am trying B12 injections now. 1cc every day for 5 days, 1cc every week for 5 week,  then 1cc every month.

 

[hayabusa in reply to 357alldaylong]

Thank you for replying with helpful information. Yes I am aware of CPD oil but I'm not sure of its legal status in the uk?

I've been having private ultrasound treatment on my lower spine and across the top of my pelvis. I find this gives some amount of temporary pain relief in my lumbar spine but it only lasts a few short days. However any pain relief even temporary is worth it.

[annparas in reply to 357alldaylong]

Why injections and not the tablets of B12...which I want to start too?

[Hidden]

Hi,

I have had a variety of nervous system issues which "ressemble" MS but I'm not sure it's wise to jump to conclusions....although it may well fit the bill.

I recently discovered that the tingling and numbness in my feet and hands which started some years ago now could be accounted for by a drug I took for cystitis - nitrofurantoin.

There are many other drugs which have an impact on the nervous system and others which can cause damage to organs - such as kidneys which can then go on to cause symptoms.

Check out the list of meds you have taken before you decide to pursue this diagnosis which may result in yet more meds that may not be a cure for your symptoms.  Let's face it most nervous system issues are poorly understood and meds for them are not exactly wonder treatments.  I've become wary of meds causing more issues than they solve tbh and am staying away from drug treatments. (Just a tip... problems caused by drug toxicity are often incredibly difficult to track down and often do not show up on conventional testing. )

Just my thoughts...not trying to put down your own experiences of peripheral neuropathy in the slightest...you know your body best and your medical advisors do sound incredibly sarcastic and rude IMO.  Personally I think that suspending their disbelief, careful listening and compassion would be more productive, along with admitting that they don't know enough themselves about the nervous system. They sneer most at what they can't explain I find.  

Some of my symptoms have responded to diet and gentle exercise ... and some have improved with time....but others not.  I'm trying to say no to invasive procedures (unless life saving), no drugs (unless absolutely necessary), low stress and good nutrition / gentle exercise....but none of that will remove pain.

If it's any help I believe that your pain & experiences are real and I wish you luck with finding a solution rather than what may be little more than a label that fits.

x

[hayabusa in reply to Hidden]

Thank you for your reply and good advice, that is really helpful reading your insight to pain.

The neuropathic pain is in my left foot today and it is intense !! Crazy situation to have pulses of pain at a similar level of breaking bones in pulses lasting a few seconds every few minutes in locations where there are no injuries. Has me climbing the walls sometimes, but I know there is nothing they can do.

My spine is too badly damaged for surgery. Infarction at L3. Stenosis. Nerve impingement. No lumbar spine movement and other things I can't remember atm.

My head injury is moderate to severe brain trauma, advanced atrophying, large white lesions, neural hypoxia, ptsd and anger issues.

They just don't know what causes the pains and numbness I have. Motor control is an issue too. But these guys just don't want to help, I get dropped like a hot stone all the time. I would rather just deal with it myself than doctors not listening to me and not caring.

I'm a biker and ex martial artist, used to be very strong and fit and had a great professional career. But I am sick to death of how I get treated by other so called professionals. They are not going to change, so I'll just leave the diagnosis alone. They just don't want to provide one because I'm too old and too broken. Not enough tax paying years left in me, so I don't get any support. That's how it is.

[Hidden]

Ive had some like that particularly in this new surgery i moved to whe moved home 1yr ago biggest mistake i ever made however i like yourself was determined and for 1 got them to send me to a dermatologist about lumps in all different areas of my body,so today at dermatologist in Crosshouse i seen a very lovely mannered gentile dr who,,,listened to full sentences,was compassionate, respectful, explanatory, helpful, and i got diagnosis of hydrenditis supprativa however a particular lump he doesn't think is the same thing ive to get ultrasound for that next week it's 2.5cm its been growing half a cm a week last 2weeks,the other pains yet to be diagnosed to,ive suffered pain on and off since young teenager but last 7yrs maybe longer,it got more often for longer untill 5yrs ago its been everyday 3yrs ago my husband died of massive heart attack aged 42yrs so the only parent my kids have is me and now i have told those drs that the last 3times i seen them i said im only 41 im only parent if i go my kids have no parents so im IT so i want my health sorted,lol think one dr was little bit worried, but i might have m.s to they have to rule out other things my sister has it shes only 23 been diagnosed, ive been in pain all these yrs and only now when im not taking any garbage is it being dealt with,you just keep it up, we all know our own bodies as i told my gp the other day when she told me it was just lupoma fatty tissue lumps!and its possible its two things.cant wait to rub it in her face.lol

[hayabusa in reply to Hidden]

Wow. That's a head full ! Bless you for taking the fight to the doctors. GP's are the biggest problem to obtaining any diagnosis, then afterwards comes the problem of obtaining a correct diagnosis. Your comment regarding a good doctor you saw made me think I had best mention the good people I've been helped by along a very difficult 15 years since my major life changing accident.

I am going to name them because these two are the most decent, caring and humane people I've met in the medical professions.

The first one is an orthopedic surgeon Mr Tim Briggs at the Stanmore Royal orthopaedic hospital in London. I cannot find enough words to describe what a fantastic man and a fantastic team of people he has with him. Tim started a process of turning my life around after 4 years of hell being homeless after I couldn't cope at home with no help or support. When his team saw me for the first time, his understudy told me they were in tears when they saw my records and how much i had struggled. Tim is a real bright shining star ! I am eternally grateful to Mr Briggs and his team who are wonderful people.

The other Doctor who I hold in equal highest reverence is Doctor Krishnan-Murali a pain specialist and other areas of specialist treatment. He is a truly brilliant person and is a very caring and empathic person. He is tireless in his enthusiasm and his acute sense of humour but while maintaining a very high level of professionalism. He is very trustworthy to me and considering I have major trust issues. He gets on with people. Another brilliant doctor who has such depth of understanding of your health issues and he is supportive when my GP is not.

So if you ever come across either of these two, then know you are in exceptionally good hands.

[Hidden]

Thanks for your kind words, it makes all the difference when its as if thier actually intrested

[Hidden]

If you have PTSD and "anger issues" .... I'm assuming this is being dealt with as a mental health issue?

If so, you may be being prescribed, or have had prescriptions for SSRIs in the past.

If this is the case you may be interested to know that a growing group of ex and current SSRI patients are reporting the tingling, burning, numbness issues you talk about. A clear link has not been established, but there are a great many people reporting the symptoms with long term use and repeated withdrawals or hasty withdrawals from these drugs.

I stress that this is "emerging" rather than "concrete" evidence, and you will have enormous trouble getting any doctor to confirm it. There is denial that this very common group of drugs can cause problems and because they are used by people with mental health diagnoses the tendency is not to report the issues and to assume that the underlying problem is "patient anxiety". Possibly, if this is how the doctors see you, e.g. as having mental health issues, you are suffering from this form of "overshadowing" .... where your mental state overshadows the physical issues and deters doctors from looking into the physical issues.

This is all "guess work" on my behalf....feel free to put me right!

The patient website rxisk.org is worth a look if you are taking or have taken these drugs.

Otherwise, as an ex biker and martial arts practitioner, I'm not surprised you have some spinal issues and trauma!! Surely it's not rocket science to see that there could be a link between spinal damage and the symptoms you report.

I'm so sorry to hear about the pain you are suffering.

take care

x

[Valerie58]

Your symptoms sound very similar to my own. I have peripheral neuropathy and scoliosis of the spine. They also thought I may have MS but repeated MRIs 4 years apart now seam to be ruling that out. I have found improving my muscle strength through exercise, reducing my stress levels and going on a low carb diet are all helping. Like you I can get absolutely no diagnosis. However I have a good GP practice have seen both neurology and spinal consultants plus physiotherapy. The physiotherapists were excellent. You may be able to self refer to physiotherapy