not quite diagnosed?

Hi there,

I am 41 and have been sick most of my life. I can remember going to my PCP as a teen and saying I have these horrible pains in my shins. He would always laugh at me and tell me I was too young to worry about such things. 30 years later I still have all those symptoms and many, many more, but no diagnosis. I have been diagnosed with fibromyalgia and MGUS, but I am told these things do not cause most of the symptoms I have. I also have constant mouth ulcers since I was a child, dry mouth, and insomnia. My rheumatologist believes strongly that I have lupus, and have had the butterfly rash a few times after being in the sun, but my blood work does not ever back it up. I have muscle cramps every single day, and my potassium is fine. My grandmother had lupus and I really believe my mother does too, but she will not be tested. As I grew older, the pains became more severe, and occur everywhere on my body, joints, chest, abdomen, nerve pains in fingers and toes, reynaude's, heat intolerance and cold intolerance, GI problems, etc etc.....

I do have flareups which last from 3 days to a week. I take neurontin and requip which do help with the pain. I have not wanted to get any more aggressive with my therapy until I have a for sure diagnosis. Anyways, trying to keep it short. Just looking for some confirmation or reassurance here. My inability to sleep has me quite frustrated and I don't know what else to do anymore. Sick of inconclusive tests and baffled docs!!Any suggestions would be greatly appreciated!

6 Replies

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  • My GP made a diagnosis years ago of rheumatoid arthritis without any tests and treated me with an antiflammatory that led to internal bleeding. It was only when I saw a locum doctor later on, who arranged blood tests in 2005, that I was told I had SLE and was given the correct treatment. The fatigue never really goes away but its manageable, I dont work so I'm lucky in that respect. Joint pain has been better since treatment as well.

    I have an antiseptic mouth wash for mouth ulcers that is excellent and I'm prone to inflammation at the back of my throat as well. Also have dry eyes and mouth, the consultant at the dental hospital prescribed a mouthwash softener and toothpaste, and I buy ointments like vaseline for dryness and sore skin round my nose. My daughter recommended Diprobase which is very good on dry skin, I use that too. As for not sleeping I've taken amitriptyline prescribed by the Lupus doc since february and thats helped a lot....Cant sit in the sun.....I burn easily..

    Looking back I had "white finger" and toes when I was a child, my mother used to bathe my feet in warm water. I'm now 65 and was diagnosed less than 7 years ago...whether I had SLE as a child is debatable, cant know for sure. I had a few questions for the Lupus specialist that she couldnt answer as too much time had passed.

    Your symptoms certainly sound like Lupus but only your doctor can tell you properly and it sounds like you have your rheumatologist onside. I'm surprised he or she hasnt given you something to help but if its not showing in tests I dont suppose they can prescribe anything....I dont think I've been much help, I can only share with you the things I can relate to and that the blood tests done in 2005 came back positive for SLE, no doubts at all...

  • Thank you so much for responding. The stories sound so similar. My rheumatologist gives me depomedrol injections every 3 months and they really help. I also take neurontin for the pains and cymbalta as well. I just started on requip for restless legs, and xanaflex, muscle relaxer) at bedtime for frequent muscle spasms. They are treating my symptoms, but my ANA and sed rate are always normal. My WBCs are always high, and my lactic acid is super high. My doctors say I am a medical mystery. They have not done any skin test yet, but I thought maybe I had Sjorgens as well, but tested negative. My rheumy says that you can have lupus for years without testing positive. I have been reluctant to go on any lupus meds without a definitive diagnosis. After this last episode I had this weekend, I really for sure believe it is lupus. You have been alot of help and I thank you. I hope you are well.

  • Has Sjorgen's been considered? Many Rheumatologists neglect this option.

  • I believe that was one of the bloodtests I had, and pretty much everything was negative, except unusual things like a really high lactic acid that docs don't know what it means. My doctor said I should be in the intensive care unit with such a high lactic acid but here I am. I have mgus as well and see a hematologist for that. It's monoclonal gammopathy of unspecified significance or an above normal iGg(protein in blood). Many, many abnormals, with nothing inconclusive going on 3 years now of testing. Thanks for replying:)

  • Arterial Blood Gas Test likely. High lactic acid levels do occur and those with chronic high lactic acid levels can be off the chart.

    Please be certain you stay hydrated as chronically high lactic acid levels damage liver/kidneys quick as well as other organs. Between your specialists they should be able to sort out what's what ... given time and many many tests. Sorry but that is the honest truth. Some patients must become pin cushions prior to proper identification of all of the 'players' (autoimmune system et al).

    3 years - even 10 years - of on going testing is to be expected unfortunately for some with 'unique' symptoms.

    The insomnia is a bugger but with such stress loads on your body and your mind, hormone levels get wonky, it is also to be expected.

    Ativan and Elavil both assist in calming / mellowing central nervous system & sleep rhythms to allow for undisturbed sleep (off label use Rx - many doctors ignore these options). If you're not already on those Rxs it is a conversation worth having with your doctor/s. Always always communicate with your doctor/s. If true advancements are to be found communication between patients and doctor/s is key.

    Has immuno-therapy been considered? IvIg + Rituxan treatments? FAB-U-LOUS for some.

    Sometimes there is NO CONFIRMED DIAGNOSIS. It is something that many patients must accept. A hard bit of cheese indeed.

    Treating the symptoms to gain the best quality of life can be the best road taken.

    Please take care.

  • Thank you so much. I know the road is long, but I get so frustrated sometimes. I'm sure everyone here has been through this which does help me alot. I feel like such a hypochondriac most times because of the iffy diagnoses. Up until this past weekend with the bad flare, I have been able to tolerate and miss minimal days of work. If I continue this way, I definitely have some big decisions to make. Take care and thank you.

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