Many Symptoms, No Answers

Brain and nerves
1

Hello all,

 

In January my hands became numb, painful and went into claws that I had no control over. My little fingers on both hands went so numb they felt non-existent. I had no blood or urine investigations and I was diagnosed with carpal tunnel syndrome and i had both hands operated on in feb and march.

 

In April I did have some blood tests and my doctor says all the levels are normal except vitamin d. I was taking vitamin d tablets but supposedly these made my calcium levels go up which caused spasms in my hands, arms and legs which led to me being admitted to hospital.

 

I have had lots of similar pain,numbness and tingling all over my body including my feet and legs. I also stopped being able to lift things up and I can't open bottles or jars. I tried to get the GP to refer me to a neurologist but they wouldn't so in the end we paid privately to see a consultant. The consultant was very annoyed that I had carpal tunnel release surgery without any real tests.

 

He then sent me to have an MRI scan and extensive EMG studies which came back mostly normal after some cramps could not be reproduced. My consultant neurologist first thought I may have had HNPP (Hereditary Neuropathy with Liability to Pressure Palsies), although due to the tests being normal he believes this may not be the case. He now believes that it may be due to stress/discomfort or possibly CFS. I don't believe that this is the case as I can trigger the symptoms to some extent. For example if I rest my arms on any surface my entire forearm will go completely numb and if I don't move them my hand begins to just feel like a deadweight at the end of my arm that I can't move and I have no control over once it begins. Although there are many ways for me to trigger it, once it begins I cannot stop it, it also happens on it's own without any prompt/trigger.

 

My own GP won't refer me to anyone for another 6 months. I am 19 and can't work as I am a software developer and can't use a keyboard very well and my concentration levels have deteriorated. I also can't travel for an hour on the train as i get pins and needles and struggle to walk when i stand up afterwards.

 

I have had many other symptoms that are constantly changing, some days I wake up and I can't feel my legs, it can take time for me to be able to stand up in a morning as my body stiffens up and becomes very numb. I have a lot of trouble sleeping and may only get 3-4 hours a night while constantly waking back up. I also have a very poor appetite and struggle to eat proper meals.

 

I would be very appreciative if anybody could give me any tips or may have some idea what could be wrong with me, I am stuck in limbo at the minute not knowing what to do next.

 I've been on multiple different medications now, I started on amitripyline and then nefopam hydrochloride which I had a poor reaction to. At the minute I'm currently taking 150mg of pregablin a day and also taking many vitamins such as B12 and also magnesium sprays/baths although my vitamin levels are supposedly good.

As of now I haven't taken any medication that has had any positive effect on me at all.

Today I have also had new symptoms in my feet, I have white lumps, yellow heels and swelling around my ankle on my right foot. Both feet are also stone cold although this is a common occurance. Some images of todays symptoms can be seen.

2

I simply do not understand why your doctor is doing nothing on your behalf.

NHS waiting times for neurologists are very long. I waited from January till July to see the only one at our local hospital.

3

So why continue with MEDS you don't need..vitiman levels are good Amitripyline will only make you drowsy..go for walks to get your circulation going..eat properly start with Soup and bread eat proteins will help lift your energy levels..put some on some woollen sock. You could have tablets contraindicating or you are allergic to them ..Get your GP to review your MEDS and get a blood test. Get a UVA lamp this help with vitiman D and sunlight depletion.  Have you been checked for MS?  Definitely sounds like a neurological condition to me. From your photos your skin is reacting to something? I was alway taught that if the skin is reacting there is normally an underlying cause.. Go back to your GP see another for a second opinion. Good to have taken photos.. Keep a Diary on noticeable changes. ✨ Good luck with it!

4

Hi The severity of your symptoms and at your age being just left on meds with no diagnosis is beyond my understanding, and being unable to work or travel, l,m debilitated and can be disabled due to chronic nausea daily for weeks on end, on and off 2yrs with no diagnoses,  thats bad enough, but at least l,m older, retired, not good at any age, but to be affected badly when young is far worse,  it sounds like nerve or circulation to some extent. Even more puzzled due to you having been in the care of consultant privately and in hospital with no or wrong diagnoses. . Why your gp wouldnt refer you on nhs again a mystery, maybe you need a new gp.  Are they still doing tests and following up for diagnoses. lf it continues to get worse l,d contact practise manager at surgery, even mp to get help,  Maybe Dawns posts will be uncensored with some better advice, having med experience. 

5

I'm going back to the neurologist at the end of next month just for an update on how I've been getting on, I haven't seen anyone since 30th June now and currently I'm having no more tests, my GP won't refer me until I've had the symptoms a total of 12 months and I'm not too sure what my neurologist plans to do next. Right now I feel very lost and I'm not sure what help I could actually get.

6

Derek76, your feet look a lot like mine. If you ever find out what those white lumps are, let me know. I have a friend that's a nurse practitioner and when I asked her about them a few years ago she said they looked and felt like adipose collections, i.e. fat. My heels and the balls of my feet have a yellowish hue to them but nothing like yours. My first guess would be some sort of liver dysfunction. I'm glad you brought this up. I'm going to ask my neurosurgeon about it on Tues. As for your other symptoms, there are so many different neurological conditions that I'm flabbergasted your GP won't cooperate! You said the Neuro doc sent you for MRI's. What did you have imaged and do you have a copy of the report? I had Dr's totally dismiss things on my MRI because their education and information was totally outdated. I have a spinal cord disease and have been told all sorts of things from the Dr's I've seen since being dx'ed. Things that range from "it's an insignificant finding and something you've likely had your entire life, it can't cause pain or any of the symptoms you're having" to "yeah, you'll eventually become quadriplegic because of the location of the issue in your spine". So, that's why I always get a copy of my reports. That way, I can look things up on my own, on credible medical sites like Mayo Clinic and The NIH.

7

Ha! So sorry. I hit the wrong reply button. This was supposed to be a reply to aflinders.

8

your feet look a lot like mine. If you ever find out what those white lumps are, let me know. I have a friend that's a nurse practitioner and when I asked her about them a few years ago she said they looked and felt like adipose collections, i.e. fat. My heels and the balls of my feet have a yellowish hue to them but nothing like yours. My first guess would be some sort of liver dysfunction. I'm glad you brought this up. I'm going to ask my neurosurgeon about it on Tues. As for your other symptoms, there are so many different neurological conditions that I'm flabbergasted your GP won't cooperate! You said the Neuro doc sent you for MRI's. What did you have imaged and do you have a copy of the report? I had Dr's totally dismiss things on my MRI because their education and information was totally outdated. I have a spinal cord disease and have been told all sorts of things from the Dr's I've seen since being dx'ed. Things that range from "it's an insignificant finding and something you've likely had your entire life, it can't cause pain or any of the symptoms you're having" to "yeah, you'll eventually become quadriplegic because of the location of the issue in your spine". So, that's why I always get a copy of my reports. That way, I can look things up on my own, on credible medical sites like Mayo Clinic and The NIH.

9

thanks Lynne

not sure why they censored the advice..nothing on it adverse?

10

Foxy, I'm glad to say that they are not my feet.

Though when I used to get my feet done at a podiatry training college the supervisor once asked if she could bring her students round to see my 'funny feet'

11

i have done some research and it looks like the lumps are  PIEZOGENIC PAPULES ie fat. the swelling on my foot has now gone down and my heel is not yellow anymore. i no longer take Amitripyline as it does make me drowsy. only take 150mg of pregablin a day for back pain, going to stop taking the vitamins today. i want to go back to a different GP but not sure whether to wait until i see the neurologist at end of august. only thing is while i wait i am loosing time and my symptoms are not getting any better.

12

agree with most of whats been said. l think anyone who has anything thats unusual or rare has a battle to get diagnoses, depends a bit on how good your gp is or how up to date, but think if theyre not in the know and symptoms are severe and perisistent over months years they automatically refer to specialist. l had symptoms of severe and intense pain frequently, poor health, aneamia, thrush, tiredness, it had a bad affect on lifestyle, partnership, travel, social, more so because it went on for years, first put down to post op re csection leaving catheter in causing infection, late diagnosed and treated, home still ill with blood clots and infection diagnosed of them. Symptoms diagnosed as post op, then gyny, d and c, then hormonal, meds given made me worse, finally after years got to phycalogical, neurosis, by which time it had affected me phycalogically. But no net or mbs advice to get info from, just gp, l did finally get visiting gp to refer me to the right type of specialist, not a gynacologist or phycatrist as previously referred to, but a urologist, who did xray, scan, and finally near a year later scope which diagnosed intersticial cystitus, chronic inflammation of the bladder, with pinpoint hemmorghages, also accounting for bladder infections, and kidney infection.

Took all of l0min to diagnose by scope and l,d suffered years of it and bad attitude to boot by gp. Meds reduced 90percent of symptoms slowly but surely.  Its not a common condition, but not very rare re l in 600, l really wish there,d been net for research and mbs for advice, it doesnt guarantee a cause, but more chance of it and advice that helps, at one stage the gp put me on amitrip, 60mg and l was like a zombie, later the urologist diagnosed amtrip as is common for ic. but at l0mg, l use 5mg at night now if it flares, thats all.  l hope you get help soon, keep going.