Many symptoms - no diagnosis

[mcc12]

I have RA which appears to be under control with the exceotion of right thumb.
Since last April I have had the following symptoms:
tingly, burning feet
left leg swelling from knee through foot
let arch pain - like a pull
right knee sore but felt like a burn or scrap rather than joint
hands tingling like I had been clapping for a long time

MRI showed one spot on brain but radiologist dermined it clinically insignificant.

RA Dr took me off humira thinking this could be cause of cns problems, Been off for 30 days- currently on neurontin which has helped withed tingling so I think this is more the cure than no humira?

Current symptoms- some mornings wake up with strong headache in right temple and clogged ears; heart palpitations, once in a great while my throat constricts(not when eating); weak right calf muscle and sometimes left calf, ankles sore and weak (I take Tylenol w codeine when they hurt bad); left foot arch pain still happening.getting crampy sensations in feet. On sat - dry mouth, very thirsty, shaky- ate felt better. I am under weight. The dry mouth and thirst and shaky gone.....symptoms keep changing like I have a different disease every day.

A few years ago I did notice a bull's eye rash under one of my arms. I had no symptoms. Can't remember how many years ago- but it was at least 2-4.

Blood test in progress for Lyme.

Anyone gone through this and received a diagnosis?

Thx in advance for listening. MCC12

[mcc12]

Thank you for great information. I have not received any results from my recent lab work. It will be interesting to see if these show anything. I see my Rhuemmy today and I feel much more informed on Lyme.
I will keep everyone posted.
Thanks again, mcc12

[wonko]

Your symptoms, which span the heart, joints, and nervous system, sound suspicious for Lyme.

I've always read that the bully's eye rash is specific to Lyme disease.  Even the strict guidelines followed by most doctors that exclude many Lyme sufferers from diagnosis state that if there is a bull's eye rash, NO testing is even necessary as the rash is that conclusive.

Since you had the rash some time ago and now have a wide range of symptoms, your case will be more complicated to evaluate for Lyme.  Many people who have been sick for a long time test negative, though many doctors contest that.

As you may know, when Lyme first appeared in the US (it's not a new disease, just relatively new here), it was mistaken for RA.  It took a mother in CT to realize how odd it was that there was such a large cluster of JRA in her neighborhood to begin investigations that led to the discovery of borreliosis in the US, or as we call it, Lyme disease (named after the area in CT in which it was found).

You should also know that while RA and other autoimmune diseases are treated with steroids, that same treatment is very bad for people with chronic infections like Lyme.  Steroids get rid of inflammation, which can be relieving, but they also slow down the immune system, allowing any infection to proliferate in your body.

A good read is "Cure Unknown" by P. Weintraub (check library or is now in paperback).  Also look for the ILADS website.

Take care

[JackieCalifornia]

Thanks for the kind words, but I really don't understand the scientific side of all this as Wonko and others do ... truly a group effort against the effects of Lyme and its buddies.  

Here's hoping the new year will treat us all better.

[Kaydey]

You describe my life almost to a tee!!!!  My lyme came back neg as did for MS.  

I would get demand a 2nd and 3rd opinion on that MRI!

I still have no diagnosis and just had another non-contrast and contrast mri that didn't show anything.

You will find some great support here... lots of great ppl....Jackie is wonderful.. probably one of the most knowledgable on the site about Lyme.

Good luck, keep you in my thoughts.

[JackieCalifornia]

Greetings.  Which type of MD is doing your Lyme tests?  Your RA doc, or some other kind of MD?  How they are trained often determines what they read into test results ...

[renschwa]

Also, is your RA diagnosis definitive? Just curious if your RA could actually be Lyme related. Just a thought...

[renschwa]

Hi there-

I have not yet been diagnosed. In the process of testing and seeing various docs for opinions. My symptoms have been similar to yours. Sore left calf, with swelling and pain, weakness is what started it all about 2 months ago or more now. Burning pains all over my body, and the dry mouth/thirstyness as well as other crazy things have been happening recently. As you said, they all come and go, every day is something different.

None of us here are really docs but from what I've learned on here if you had a bull's eye then you most likely have Lyme. Correct me if I'm wrong though, Lyme gang. On here you'll find some good advice and support from people who are trying to figure out why they are not feeling well also, so welcome.

Let me know what happens. I'm very curious as I have similar symptoms.