Rheumatologist and Neurologist?

i was referred to both when I was first Ill, the Neurogist thought I had MS but after 2 x MRIs's I was told the Rheumatolgist would sort me out!

I get 'Nerve pain'? In my feet and have loss of feeling in them too, I take 2 nerve pain killers Pregablin and Carbamazepine for it but despite increases in dose I still have it.

I have a Dx of Undiferential conective tissue disease and Raynards, for which I take Nifdepress Mr and Azathioprine.

Seen Gp for drug review today, she wanted me to ask Rheumalogist about this pain but didn't get the chance! She says I'll have to learn to live with it or she will refer me back to see Neurologist who I did not like and no one has a good word for.

Who do people normally see? Do you think I should ask to see someone else? Gp? Consultant at another hospital?

17 Replies

  • I have no answers for you on this I'm afraid. I have RA and severe Peripheral Neuropathy (feet and legs, hands and arms and also now face and lips and tongue) and Hypothyroidism and am trying my hardest to come to terms with both but failing horribly. I have also had diagnosis of Raynaud's and Sicca (Sjogren's) and am waiting to see a neurologist. My GP is nice but I can tell he's sick of all this disease represents and frustrated at the lack of progress. Woman GP has got rid of me by being too honest about the drugs she's prescribing. Both refuse to expedite my neurology appointment saying that Peripheral Neuropathy, which they acknowledge is truly horrible for me, isn't a medical emergency. Man GP suggested today that it's best if I wait patiently for this consultation with the neuro because otherwise I might end up being sent to a one off neuro in a different hospital to my rheumy which wouldn't be ideal.

    Chronic illness is just the pits eh?!

    I just don't know how we can get used to these symptoms or change to the attitudes of some health professionals, consultants in particular? I am currently off all medication with the blessing of my rheumatologist, having tried 11 powerful drugs since my diagnosis three years ago and failed to tolerate all but two of these. I've just had to stop taking Gaberpentin and am having a horrible day with withdrawal symptoms - a massive surge of PN pain and horrible tummy ache.

    But I'm trying to stay hopeful that perhaps there are still drugs out there which may help me and for the time being I'm going to keep trying to get back on top of the pain and fatigue through natural means i.e diet and exercise.

    I do hope things improve for both of us very soon. Take care.

  • Hey twitchy... I know this is a far stretch, but I just had terrible jaw pain out of nowhere. Just purchased stress nasal product of natural herbs. Sniffed it a couple of times, jaw pain went away!!!! Wow...wouldn't that be nice if this helped our pain. Don't know if it was just an accident, it went away on its own, or actually worked. Maybe something to look into. I have heard of healing oils before from a woman who lives upstate in Rochester that sells them. This is very new to me since I am trying to help my daughter naturally with anxiety.

    Hope you get help and feel better. So many people with pain. Doctors actually say they don't know where it comes from. I believe we are all just too darned stressed!!!

  • Nope...spoke too soon...didn't work. Aah...got to keep researching. I will not Give up!!!

    Had jaw pain all night and today cant chew without pain...Yikes!

  • Sorry it did not work for you, I think anything is worth a try, as long as its not too expensive! Or weird!

  • Hi Twitchy

    So sorry you've had to stop Gabapentin. I hope you go to the neurologist soon!. Take CareX

  • If you go on the NHS choices website I think it tells you how long the average wait is? I thought now they had to see you within so many weeks or send you private? This happened to me when I was sent for nerve conduction studies.

    I think I had to wait 3-4 months to see the Neuro.

  • I have been told my wait is 12 weeks - possibly more. However my GP tells me that they have to try to keep within their waiting list times so if I fall outwith it there's a chance I will be sent elsewhere for a one off neurology appointment - which he feels wouldnt be good for me because they won't be intestered in my long term health or be working with my rheumatologist.

    It isnt really that good to be off drugs I feel - I would much prefer to be able to tolerate them and possibly to get my life back. Presently I'm hardly eating a thing having eaten very healthily for years but now lost my appetite but feel too dreadful to enjoy the resulting weightloss.

    This has been really severe for over a year and yet I've never had an MRI or CT or had my joints checked by ultrasound. It is just damned depressing I must admit! I hope this perhaps makes you feel a little more fortunate to at least have ruled out MS or cancer even if you don't feel you are getting anywhere with your foot.

  • Regards to having an MRI your rheumi can send you for one....

  • My rheumy isn't really saying anything thanks Sheenas121. I think they each expect the other to address this so are now hoping that the neurologist will take on my problems. I suppose it is hard to know which part of me to MRI really bearing in mind that the tingling, pain and numbness is very diffuse?

  • Thanks for your reply, sorry to hear that you are having a rough time, but glad to hear that I am not alone in this.

    Thinking of changing my Gp to another in the practise, a more senior one and saying to them look it's 4 years since I first came to Dr x and although she has sent me for tests and to see consultants I am still ill, and struggling on a day to day basis, what do you think?

    I was told by Gp I needed an urgent Neuroloical referral when the nerve pain in my foot was so bad I was struggling to put it down, I was told this takes 4-5 weeks, but I was due to see them in 2 weeks anyway for a follow up from an MRI. At this appt I was told my MRI showed a bulging disc but not the MS lesions they were looking for so I was discharged! Into the care of my GP and Rheumtologist.

    I do not want to see the same Neurolgist again and understand that I can ask to be seen by someone else at another hospital, is this correct?

    I think it is great that you are managing without drugs, as I often wonder if they are doing more harm than good. I did try to reduce my Pregablin as I was upset about my weight gain, but it did not work.

    Take care

  • Hi Swizzle

    So sorry you suffer with nerve pain as I do and are juggling 2 Consultants, not easy!. I've found steroids have been helpful with nerve symptoms so your Rheumy could help there. An alternative Consultant that could be helpful is at a Pain Clinic. Your GP could refer you specially as your on strong nerve painkillers!. They have access to different treatments and drugs. I go on a regular basis for steroid injections in my back and have had a lot of benefit. Things to think about which i hope you find helpful?. Good luckX

  • Hi misty 14

    I have been given a steroid injection to help with stiffness but did not find it helped much.

    Suppose I could ask about pain clinic, I have a friend who goes to one.

    The trouble is I am in pain now, but it's hard to explain, the nerve pain makes my feet 'buzz' and feels like pins and needles, like when you have a dead leg from sitting on it, but it's there all the time. There was a time when the drugs took it away, but Gp says I'm on the Max dose now so I'll have to learn to live with it! Am I wrong in thinking why should I? Feel like they are treating my symptoms but not getting to the bottom of it. Sure she could not do her job if she felt like me, so why should I live like this?

    Sorry for the moan

  • Hi Swizzle

    No you are not wrong in wanting to sort this nerve pain. Your GP sounds very negative saying your on the maximum dose of drugs and you'll have to live with it. As a patient you have the right to have a second opinion at GP level and Consultant level too and this could well be a good idea for both, keeping the idea of a Pain Clinic as a last back up. What do you think about that?. It's important for us patients to feel there is always something we can do or ask for!. Good luckX

  • Nerve pain is terrible the one thing that did help was gabi and maximum dose is 3600 which to start off with is what I took and even had an alarm to wake me up in the night to take one took about a week... xx

  • Oh and chocolate is good and not just saying it medical fact... enjoy xx

  • I don't think it's wrong for you to want to get better from this nerve pain - mine is very widespread and if I had to settle for pins and needles, numbness and pain in all four extremities and arms and legs too I really would lose the plot! Like yours my GP did try and tell me I had to learn to live with this but I told her that I can't and won't. I agree that it is wrong for the symptoms to be treated without trying to address the underlying cause. I don't think they would put up with this kind of torture and I don't think we should either! Twitchy

  • Dear Swizzle:

    I really feel for you. This is almost exactly how my "journey" started out in 2002/2003. Most significant initial symptoms were Neuro, so when docs in my "small town" in Washington state (in the United States) couldn't figure it out, my GP referred me to a semi hot shot Neurologist in the nearest big city. I had spastic movements in my arms and hands and burning nerve pain in my upper body at the time. My first brain MRI showed white matter lesions and even a "black hole" in my left basal ganglia. The first radiologist even called my Neurologist from the MRI and said he thought I had M.S. Several investigations later, they decided I did not have M.S., but a cardiac defect that was causing me to throw micro emboli, thereby making the pattern of small lesions on my brain scan. A quick surgery to fix the cardiac defect, a diagnosis of Raynaud's for the remainder of much of the peripheral odd sensations in hands and feet, and they decided the rest of my problem was rheumatologic. The Rheumatologist diagnosed me with Undifferentiated Connective Tissue Disease, with a differential diagnosis of Behcet's Disease (which I thought was crazy at the time - the Behcet's, not the UCTD), put me on Methotrexate, Hydroxychlorquinone and steroids for 1-1/2 years, and I got better. I stayed in a quasi-remission for a couple of years. (I still hurt unnaturally every time I got even a mild injury - something that previously would have taken days to heal, took weeks to a month or more, but I was able to work full time plus, jog 25 mikes a week, looked normal, etc. I was diagnosed with Fibromyalgia somewhere in there, which never felt right, but I figured I had mostly beat whatever it was that had gotten me down before. I just had to put mind ove matter, I thought.)

    I came out of remission full force during my 2nd pregnancy in 2006. By the time I had stayed off all immunosuppressive meds for nearly a year and a half for the pregnancy and breastfeeding (for which I had to be on bedrest for nearly a year of that, but I made it), almost as soon as I stopped breastfeeding and tried to return to work, I began to get VERY sick. Visible lesions everywhere, eyes swelled shut with staph, pulmonary edema in my lungs, diabetes insipidus, pneumonia, chronic sinus infections, pain so bad I slept only every 3rd day, tachycardia, costochondroitis, swelling all over my body, to name just a few...I was diagnosed with all kinds of things - from Shingles to Acne (for the 4" diameter lesions on my face - Seriously?) I saw a Physiatrist who told me not to accept the diagnosis of Fibromyalgia, but to keep pushing for a diagnosis that made sense. Finally, in 2008, I was diagnosed as having Behcet's Disease - I think the nature of the visible skin lesions, as well as lesions in my spine took me from possible to probable then, and they "flipped my diagnoses" - from UCTD as primary with Behcet's as the differential to the reverse. By 2011, when I began having inflammation of the blood vessels in my eyes, it became a "definitive" diagnosis (and not a single doctor has questioned it since). Although I continued to have neurological symptoms throughout this entire period (since 2003), I was not diagnosed with Neuro-Behcet's until January 2014. 

    Over the last 12 years, I have seen literally dozens of specialists of still least 20 different subtypes. In seeking relief from the various (quite miserable) symptoms, I have been on probably over 50 different meducations at one point or another (not all at once), and am presently on more than I care to count (despite constantly seeking to minimize them). I guess my point in describing all this is that these types of illnesses can be very difficult to diagnoses sometimes. It is, unfortunately, a journey, not a race to a solution (or, most of the time, a cure). This is something I have been loathe to accept, as it is not within my nature to accept that I can't fix, solve things, or even put them on my timeline, if I put my all into something. Hang in there, don't give up searching for the right diagnosis for you. Try everything that makes sense to you. Don't be afraid to ask for second and even third opinions, and new referrals. Learn what you can about possible diagnoses (without becoming obsessed with it - it can be a fine balance). Do not be afraid to be an advocate for yourself. You are your own best advocate. Document everything. This will help your doctors. Obtain copies of, and review your key records/reports. Ask questions. These things take time. It is a long process much of the time, so be sure to take good care of you, and live in and enjoy the moment as much as you can all along the way. Hugs and prayers for you.

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