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Discussion Starter · #21 ·
Hi again :)

Bit of an update, so for the last 2 weeks ive got some new symptoms :worried:
iv had increasing weakness in both of my legs down into my little toes, that is aggravated by touch and movement sometimes painful/burning and still got awful cramps on and off in my legs, also both my arms from the elbow down into my little and ring finger are very weak and tingly, my little an ring fingers on both hands are curled in toward my palm, so off i went to gp again, and she says theres something wrong with my ulna nerve and also the nerves in my legs and so has referred me to a neurologist (17th April!), I was wondering if anyone else has experienced these symptoms? :rolleyes:
Also i seem to have a red/flused rash that feels warm over my nose and cheeks and sometimes ears, this only seems to appear in the evening, although it may be there slightly during the day but as i have many freckles on my face it is hard to see, although a friend did comment on how tanned my face looked (and no unfortunatly i havent been on holiday or been in the sun! :rolleyes: ) I was wondering if this could be a butterfly rash? or would this be present all the time and not just in the evening?
Apart from these new symptoms, my dizzy/faint spells seem to have become a little less common and intense which is great! :)
thanks for reading, i hope you are all well, thanks again
bex x x x x:wink2:
 

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I had cubital tunnel syndrome prior to diagnosis - with the same arm symptoms as you to a tee. I also had muscle wasting in my hand from the nerve compression. I had to see an orthopedic doctor and have surgery on my elbows to correct the problem.

My malar rash is definitely more red than tan looking - so not sure what to say on that other than it's much more common to be reddish colored.
 

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Hi Bex,

Sorry to hear you are suffering so. I hope your GP and neurologist can get to the bottom of this for you soon.

When I had muscle cramping the doctor had me take calcium tablets with magnesium. It did the trick for me in just a couple of weeks. Since your calcium is high i wouldn't try this without checking with your GP first.

During a cramp it helps if you stretch the muscle. If it is in your leg flex your heel out as far as you can. Also remember to relax the rest of the body. It is human nature to tense up during a cramp which only intensifies it. Applying heat or massaging the area may help also.

Good luck with your neurology appointment.

Take care,
Lazylegs
 

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Hey Bex, before I was diagnosed with sle I had the run around on what was wrong with me. I basically was told it was all in my head. My symptoms started after the birth of my last child. He was the only child I had natural so he tore me and I needed to have stitches. When I went home I was okay for the first few days except for a little discomfort which was expected but then it started I had to sleep on my side because of the discomfort in my private area so I could not lay on my back. I would sleep on my side and then the next morning that whole side hurt like crap so I wrote it off to the way I slept. So then the next nite I turned onto the other side and the same thing happened I woke up that morning with that side hurting like crazy. Then it started in my hands my fingers would swell and hurt to bend it got to the point that I was in tears changing my sons pampers and then I did not have the strength in my fingers to pull the tape off of the diaper to change him. Needless to say I was in pain and then on the top of it I was having the baby blues and felt that I was not taking proper care of him and everyone was trying to convince me that I was taking great care of him. Then it started in my lower extremities it was taking me about 20 minutes to get off the sofa to a standing position and that hurt like crap. It got to the point that I just wanted to end it all because I was in so much pain. Finally I decided to go back to the hospital and be checked out. That was a waste of time if you ask me because the doctors said that they could not find anything wrong with me and basically told me that it was all in my head. At this point my mother had to come stay with me and my kids because I could not take care of them. The doctor did put me on pain meds that wiped me out but it was not helping to find out why I was in the pain. I decided to go back to the hospital and another doctor came in and asked me what the problem was and I explained it to her and thats when she said she had just read a article on Lupus and my symptoms fit it so at this time she drew some blood and sent the labs away and prescribed me steriods and another drug for the pain. In a few days I was feeling better. The blood results came back and it was negative so again we did not have a diagnoses . I would say for about 4 to 5 months went by and I was feeling good got back into my normal routine and then I broke out in a bad rash on my face and arms and at this time I did not associate the rash with the joint pain or anything so I went to a dermatologist. The doctor took one look at the rash and stated that it looked like the rash you would have if you have lupus and I stated that I was just tested for it about 4 to 5 months ago and it came back negative. He then explained to me that it can take some time for it to show up in bloodwork that he wanted to do 2 skin biopsys one on my face and then one on my arm and we waited for about 10 days and the results came back as being positive for sle. That was a relief because now I know that what I was experiencing was not in my head that there was something actually wrong with me. I would say about 1 year later it finally started showing up in my bloodwork. I know I have rattled on but there are more then one way to diagnose you having lupus. I hope this helps and don't give up hope because eventually you will get the appropriate diagnosis whether it be lupus or some other disease so don't give up hope. I hope to hear from you again with updates on how you are . Thanks for reading and take care of yourself. Laurie:wink2:
 

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Discussion Starter · #25 ·
Hello everyone :)
Yes im back again, so still no progress on the diagnosis front :rolleyes: and im still not well :worried:
Ive been keeping a diary over the last few months and have found out the following, i seem to have symptoms in a cycle eg

1.Pain in back, breathless, Leg cramps, Hot sweats
2. Very weak muscles, blotchy rash on hands and red flushed face,
3. Dizziness, feeling spaced out, muscle aches, pains in wrists, sore/burning eyes, all over body twitches/jerks,
4. Sores in mouth and nose, back pain, sore glands, extreme thirst

As well as this i still often feel faint/light headed for periods throughout the day which i really hate! :( and also have other symptoms that come and go randomly

I have also looked at the alternative criteria and fit some of them -Migraines, Raynauds, growing pains, reactions to insect bites, family history of auto-immune conditions, pre-menstrual exaceberations,

I also have been really bad again the last few days and couldnt work out why, but looking at my diary i remembered that about a week ago it was very hot and sunny and i sun-bathed in the garden and got a little sun burn, could this have caused me to be set back again?

So ive decided im gonna go and see my GP again and ask her for a referral to the London Private Lupus Hospital as even though my bloods came back negative i feel that it would be worth seeing the experts in london to see what they think. My question is how do you think i should approach my GP about the referral letter, shes been really good with me so far and i want to keep her on my side and i dont want her to feel that im under-mining her as she says that the negative blood tests confirm i DONT have Lupus. Do you think i should take a copy of the alternative criteria (st thomas) with me?
Also do you think that the docs at the Private Lupus centre will see me even though my bloods are negative? Thing is im not exactly rolling in money at the moment and dont want to waste money on going all the way to london if there is a strong possibility its not lupus. :sad:
Sorry ive waffled on for sooooo long im just fed up with feeling so rubbish and being labelled as Chronic fatigue syndrome, i just want to work on getting better asap. Thankyou for reading this i really do appreciate it and look forward to your comments and help, (ps big thanks to LolaLola who i pm'd i'll reply to your msg later, thanks for all your help ;) )
Thanks Bex x x
 
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