No diagnosis and in pain for over a year help!!

Brain and nerves
1

Hi

I am looking for some ideas as GP lovely sympathetic but says beyond her . Refererd to rheumatologist who seems blinkered. and only does inflamation tests which there is not

I spent last week doing a good impression of someone with taurets, i got a sharp pain and screemed and then found that it helped mentally so subconsciously i must of decided to scream when it really hurt and i feel happier this week and I have stopped screaming. Although it still hurts.

I have had pains in my hands and in my legs for several years but nothing severe just ache for no reason and lots of pins and needles. I thought nothing of the pins and needles untill recently.However just over a year ago after building up the pain became severe , literally my arms were making my eyes water.

It was like a deep muscle pain right into the bone  it felt like my bones were ice cold and i had been hit with a hammer. It hurts to type myhands struggle to hit the keys.

In a few weeks i had these p[ains sometimes lasting minutes sometimes hours all over my body. the slightest breeze caused my body to contract and deform and feel severe pain. Even a fan on low in the summer would be agony, so winter is very nasty.

apart from the deep pains i have a sensitivity an empty shopping basket on my wrist after 20 or 30 seconds fels like a bang from a hammer, I cant hold knives they hurt my palm and i also spasm and just missed my foot with a sharp cooks knife.

I get pains also on the left of my face which are soothed by covering with a soft cushion I have.these last hours.

I have had severe pains in my rib cage but not for about six months these were like being crushed.

I often get wrong words like washing machine for dryer beef for pork etc i know the right oneand cant get it out.

I was slightly better in the summer but the cold started and I am a mess again , spending much of my days wrapped in a cardigan heating on full with a quilt over me so no draft can hit me and hurt. typing this is wipping me out but i just want to know if anyone has any ideas

i am on lots useless of pain pills and gabapentine which has almost stopped pins and needles but no other effect

The rheumatologist seems interested in inflamation only but has said it may be some sort of nerve hypersensitivity but no more than that.

Any ideas please help me

2

Hi you need to see a neurologist soonest and have MRI plus spinal tap to eleminate MS as many of the symptoms you describe seem to point that way. the chest pains are called a "MS Hug" which comes and goes. skin sensitivity is another which is something I often get and cannot bear any clothing touching that area. There are additional drugs combined with Gabapentin which can help, Duloxetine for one.

Dont go through life putting up with pain when it can be helped with the right diagnosis so push your doctor to go to every known specialist until you get a proper dx

3

hi steven thanks for the reply . we have suggested it is neurological to the gp but she thinks not also the rheumatologist flicked this suggetion off.

Gabapentine is the only thing that has helped and thats with the pins and needles that i hadnt thought to mention  as minor compared to other pains. although am on a relativly low dose 300mg 3 times a day.

The only reason i think may be neuropathic pain is that gabapentine is prescibed for that and fits and i am not being treated for fits , spasms some times but not fits.

The touch pain is strange its not on the surface its if i touch my arm semi firmly not hard it takes a few seconds and then the pain hurts deep in the muscle and bone not on the skin surface , i thought MS had to have surface skin pain and deeper pain was almost secondry, i dont know sorry if i missunderstand, just very confused.

sat here less than two minutes with my leg bent now my knee and calf, and thight ache like i have done step aerobics overly intese. typing hurts my upper arm and my fingers .

So much thanks its good to have possible answers and the support an reply gives is priceless.

4

MS pain can be just about anywhere but certainly it is rarely on skin surface since it is the damage to nerves which cause the pain. Essentially the immune system attacks the nerves and strips off the myaline covering it so the the nerves short out. I have pain running from the tail bone down both legs and soles of the feet. This can range from pins and needles to severe burning sensation called Dysesthetic burning. Frankly it is beyond your gp to make such a diagnosis thats why there are specialists such as neurologists so dont accept the gp word and insist you get tested by a neuro and if that fails try every specialist around until you have a dx. I was sent to 4 different specialist before a neuro so I know how frustrating it gets and it took 5 years to diagnose my PPMS. If it is RRMS you have the sooner you get that dx the better as there are some new very effective meds for RRMS.

You can chat to me here anytime you like so dont feel you are alone as many others here will tell you they have all been there and understand

5

Ok tomorrow stubborn and firm 9.40 am will tell my very sweet GP I am not leaving untill she refers me to a neurologist.

Its difficult to be firm or argue with her as she is so lovely and sympathetic. she regularly gets told off by the senior partners for taking too long with her patients and she dosent care she carrys on taking as long as her patients need. Although you often have to wait an hour to go in becuse she has a backlog she is still very popular with the patients and the hardest doctor at the practice to get an appointment with.

It would of been easier to be firm with her predescesor who was horrid.

thanks

nicola

6

No problem Nicola, I know it can be hard especially if you have a nice GP which believe me is few and far between. I am sure she will be sympathetic to your worry which will only cause anxiety if not dealt with. I would also go to the \LDN website and download the info on there to try and get a prescription for LDN which is a great drug and wont interfere with other drugs you may be on. THats what I did and got a prescription from him although you still have to pay for the LDN as it is not on NHS prescribed lists.

7

I should also mention that I am on gabapentn 1200mg three times a day and it is definitely for nerve pain

8

Many thanks for the help

learnt so much , today 

9

I also have been living with pain throughout.  My Dr thought it might be neuropathy and prescribed Gabapentin.  He also referred me to a rheumatogolist.  She says I have osteo, rheumatoid, and psoriatic arthritis.  I was on plaquanil and methotrexate but my eyes started to be affected by the plaquanil and after liver cancer the methotrexate was not good.  Stopped those and started with another med.  My aches and pains are becoming more severe.  My feet tingle and burn and hurt horribly!  My hands/fingers tingle and hurt.  The pains have started in my elbows, knees, head, and various other places.  It is becoming horrible!  The Gabapentin I am on is now up to 3200 mg daily and helps a little, but not near enough

10

get your gp to refer you to a neurologist (this is a slow process and I ended up paying to see one privately just for a diagnosis).  I did not find the pain pills helped much and ended up with stomach bleeds with codeine and oramorph.  i wont take gabapentin because of the side effects.  dont take the statement of some sort of nerve hypersensitivity - you need to know what it is - they are very fond of fobbing you off (at one time I was dismissed with 

CFS / ME.  even now my respiratory consultant dismissed my constant cough with microaspiration (no treatment of course).  sounds a lot like peripheral neuropathy to me

11

you can only go up to 3600mg of Gabapentin and if this is not helping its because your body has got used to it. The alternative is Pregabalin which is not a nice drug with many side affects . there are a couple of other alternatives but not many and I have tried them all over the past 15 years. the fact is none of them will fully relieve the pain of damaged nerves and only dull it down. Most MS sufferers with similar pain have been waiting years for any new drug but nothing is in the pipeline yet

12

Sorry may be being dumb but peripheral sounds like its on the surface or edges .

My pain is deep in the bones and muscle causng spasms.

what is peripheral neuropathy why does it sound like it to you?

 I am afraid I am a why and how person I am not good at being told 2+2 is 4 i need to know  how and why ? and yes its annoying

 

13

You might find it helpful to google the term peripheral neuropathy for more information.  Peripheral refers to the way it affects the ends of the nerves first and progresses differently in different people.  for me it began with sharp stabbing pains, burning feelings, and sensations which seemed inaccurate i.e. felt like water down my legs when they were completely dry etc.  It has nothing to do with the surface of anything or edges- perhaps the ends of the nerves would make more sense to you.

 

14

Many thanks

reading up this sems many and varied in types and symptoms

Seeing GP in 2 hours going to push to see a neurologist

15

Hi steven

Saw my GP today and asked to see a specialist that deals with nerves as rheumatologist is only ruling out same things inflamation over and over .

GP said a neurologist would only see me if i was being refered for a specific  nerve issue and mine are two general. specific being examples she gave a traped nerve carpel tunnel or MS , my symptoms are to general for these apparently.

GP did advise when i see rheumatolgist in jan i could discuse with her ,( but she has  already said no).

I did say rheumatologist only interested in inflamation and gp advised no she deals with general nerve damage and more specific is a neurologist.

So increased gabapentin and get on with life.

really concerned as rheumatologist has said if no positive test results by next visit i will be transfered over to pain clinic . (so thats no answers give up )

ho hum roll on jan then i feel a complaint coming on

16

I am a bit confused here as you say your gp stated your rheumatologist is also a neurologist. That clearly appears wrong so either she is confused of the specialist isnt a specialist. You are fully entitled to demand to see a neurologist and the gp does not have the power to say no, her role is simply to do a referall. Since the Rheumatologist has got nowhere then insist to be referred to a neuro. for many of the diseases mentioned here the average patient has had the same problems of being misdiagnosed or sent to the wrong people over and over again. Its very frustrating but its down to you to demand what you want or go to another doctor.