posted
I developed a huge crater in my arm and my Neuro thought it might be muscle atrophy. So, for two months I went through the process of dealing with possible ALS or M.Distrophy. This included applying for diabilty etc. After an MRI and EMG testing, the results ruled out atrophy, but the tissues underneath my skin are deteriorating!
Luckily, I remembered that I was given a steriod shot. I did not recall the location until I got copies of my medical records. The nurse administered it in my left deltoid! Bingo!
So, does anyone know if this will have long term effects aside from the crater? Will it get bigger? Or will it weaken my arm?
Thankfully, I found this out and my Neuro. can rule out a bunch of stuff and accept my WB results, finally!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey..
Sorry I can not predict what might happen to your arm at this point.
I AM concerned by this line you wrote...
"Thankfully, I found this out and my Neuro. can rule out a bunch of stuff and accept my WB results, finally!"
I HOPE this doesn't mean you have had a positive Western Blot and a neuro has wasted time playing around looking for explanations for your arm problem and has not treated you for the infection.
Please tell me that ain't so!
If it is...
THAT is the worst of your problems..
NOT the arm.
If you don't have a LLMD... please don't waste any more time with this guy..
If your arm is losing muscle.. your entire body could be also.
The steroids might have just sped up the process in that spot.
posted
I begged and pled to get a LLLD to order the WB test, but he was no longer taking new patients (he did). So, my GP got the positive results and sent me to the dredded ID!!!
He order a serology test which turned out negative! So, he somewhat convinced me that the WB was not vaild w/o a positive serology test! He said that I had MS and go directly to my Neuro. Well, the ID only sent the serology results not the WB!!!
My Neuro. at that point said no Lymes esp. because of my arm and w/o the WB results. After four months, I found out that the WB results were never sent and my shot was given in the wrong place. Now, my Neuro will accept the LD results (I think), since I have the symptoms too!
What luck I have!!!!!
My arm is not losing muscles, but tissues. Otherwise, we would have been in full persuit of MD or ALS!
posted
Where are you located? How long do you think you've had Lyme disease?
From what you've said, it sounds like all the drs you've seen are basing a diagnosis ONLY on test results.
Lyme is a "clinical diagnosis", with test results being supportive info. I agree with Tincup. You need to be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP.
Be aware that a lot of drs are called Lyme Specialists or LLMDs because they say they treat Lyme or because they're an Infectious Disease Dr. The qualifications are much higher that that!! You need to see a LLMD who has lots of satisfied customers. The people here will help you find a LLMD.
I don't know what other symptoms you may have, but a LLMD will also check you for co-infections, like Babesiosis, Ehrlichiosis, & Bartonella. Will also prescribe adequate treatment.
Go to Seeking a Dr here on LymeNet & put your location in the title.
We don't give dr's names here without their permission, but LLMD info will be e-mailed to you.
My Neuro. says that I do have the clinical symptoms . . . I have had them for four years. However, like so many of us I have been misdiagnosed! Chronic Fatigue, FM, Inflammatory Connective Tissue Disease, possible MS, ALS and MD. Now that I also have the WB positive results he accepts Lymeand can rule out other causes.
I am from the Houston area, and at this point I am waiting to see what my Neuro.comes up with as far as treatment. Thanks to all the info. I can see if I need to find a LLLD or if I can be treat properly with the Neuro.'s help!
I am not too sure of the LLLD that are around my area. I question one of the Dr. There is one that might be ok, but I am waiting to see what my Neuro. comes up with.
I was given the steriod shot because I had horrible breathing problems. I am just afraid of the reproductions from the mistake the nurse made. I did not know I had Lyme at that point and the shot sent me into a tail spin. Not to forget the crater in my arm! No more steriods for me!!!!!
I am eagerly awaiting treatment as I cannot take this anymore! However, I am very scared about the die-off-effects. I have to keep my job and care for my young kids. I am sure all of you are in the same boat.
My former spouse, has symptoms also! He had affairs and did not support me because I was ill! Now, he is going through the same thing, and he is freaking out! I think he learned his lesson about taking care of and believing sick people!
Sorry, to ramble . . .it is just great to have some one who understands all of this!
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Hello and welcome to LymeNet.
You are wasting your time and spinning your wheels when you are waiting "to see", and not getting to a doctor who really knows about and usually only treats Lyme Disease (LD).
I do believe that we've got some members here from your area and Lyme Literate Medical Doctors (LLMD) can be found in your area.
Seeing an real LLMD is of the upmost importance for this is a complicated disease and as a rule, a PCP will not have the time to dedicate to treat you properly. Usually, an LLMD is a doctor who ONLY treats LD.
I wish you well and hope you can find the proper help that you so deserve.
STERIODS ARE A VERY BIG, BIG NO-NO!!! if you do have LD...so keep that in mind. Lyme can produce many symptoms and you shouldn't ignore them.
posted
You need to find an LLMD on your own, NOT wait to see who the neuro will send you to! YIKES!!!
Also, a Western Blot IS a serology test! Serology just means a blood test.
The duck was probably just running the notoriously defunct ELISA test. That test OFTEN comes up with false negatives. You have a 40% chance of it being negative.
I hope you have posted in Seeking a Doctor for an LLMD in TX?
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