Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 06-03-2007, 09:50 AM #1
momzpeachy momzpeachy is offline
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momzpeachy momzpeachy is offline
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Default I'm back

Hi everyone

I'm sorry about being away so long and not getting in touch with you guys. I have been dealing with such a mess.

It all started when I got those darn injections/nerve blocks. Every time I went I got sick and knew something wasn't right. I have a long history of allergies. I'm allergic to everything. I mentioned to the Doctor that I think I'm having an allergic reaction to the lidocaine injections. I was having 1 a week for 8 weeks. After each one I was dizzy, vomitting, running a fever, red all over the are where he injected, itched like crazy and felt like I was on fire! The Doctor kept telling me to use ice and I couldn't be allergic to lidocaine. I just knew something wasn't right. Also, I was making absolutely NO PROGRESS with these injections. The Doctor said he usually sees progress by the third one and doesn't like to do more than 3-4. WEll, I had 8 then he referred me to a pain center for a facet test block. Well, this of course was the same kind of reaction but worse. My husband was with me and he knew something was wrong. When the doc was doing the procedure I said I felt like throwing up and it burned real bad. When he was done I could not stand up by myself. 2 people had to help me get dressed and I could barely walk. THey didn't know what was wrong. They looked at me like I was nuts. They had to help me into another room and I layed down for a half an hour and I was so sick. Half an hour later I still couldn't walk without help. I was dizzy and sick. My husband helped me out of there. Nobody seemed to really be concerned.

The next day I was in pain all over my body. I was running a low grade fever and my hair was coming out. This went on day after day. I immediately called both Doctors and said something is wrong but they didn't have any answers. I said no way am I having any more injections right now and I need to figure out what's going on. Every joint in my body hurt and I couldn't get out of bed. I have never felt so sick. I then started having problems going to the bathroom and got myself to my regular Doctor. My vision was also blurry at this time. At the appt..I was still running a low grade fever, had a rash on my face and blood in my urine. The Doctor said I have all the symptoms of Lupus. I freaked! So then I ended up going for blood work and they tested for every disease under the sun. The doctor then put me on some medicine which then caused me to be in the hospital 2 days later. I had an allergic reaction to the medicine. I'm going nuts by this time!

All my tests came back negative for Lupus and other diseases. We were all putting things together and figured maybe I was having an allergic reaction to something in those lidocaine injections and it started a world of mess. Also the medication she put me on has the exact same ingredient as the lidocaine (it's a preservative) Sulfite! HA! Well then I started thinking..maybe this is why I can't ever manage to drink wine and beer. ALso during this time I couldn't drink any wine. I tried and almost fell on the floor in shock. I now can't tolerate any vinegar, pickles, all kinds of stuff.

Well anyways, it has now been figured out. I'm allergic to sulfites and other preservatives. I ended up with drug induced lupus. I have been better now except for the neck and arm pain. That never went away.

All this time I got nothing because I was so sick. Once all the lupus symptoms cleared I could then focus back on the neck which hurts like hell. I can't stand the pain..it hurts that bad! I can't do anything and I went to a PT and he said i no doubtedly have thoracic outlet and it's really bad. He said I'm a mess. He could see huge problems just when moving my arm and head certain ways. He suggested PT 3 times a week now. I was told by several docs I need the PT and NO MORE INJECTIONS! That's all the neurologist could do and then he left me hanging with nothing. I gotta do something to get better.

I am going to this really cool place in Allentown. They have all kinds of Doctors and therapists all under one roof. It's OAA. This place is amazing! They have a huge facility with everything and they seem to know what they are doing. The therapist I saw knew everything about TOS.

I have to go for now...can't type anymore. I am now using a laptop to type because I just can't sit at a computer desk and hold my arm out. The laptop helps but I still can't sit for long.

Oh, and my WC hearing is set for this Thursday. I hope it goes well. being out of work all this time is very painful. I am struggling in every aspect

I hope all of you are doing well and I will talk to you soon
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momz of NE PA:
Right side TOS (Scalenectomy 1-14-08). Spinal problems. Thoracic Spine hernaited discs pressing on spinal cord and small tumor - still being investigated. A very tired mom who feels like giving up!

Wishing I could think more positive and be well again!
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Old 06-03-2007, 11:26 AM #2
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astern astern is offline
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Poor Momz, I'm so sorry for you that this happened. Isn't it a shame when we have to take control of our own healthcare? I'm glad it wasn't worse - it could have been. Hope you are feeling better soon.

Good luck on the w/c thing, keep us posted!
Anne
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Old 06-03-2007, 02:46 PM #3
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momz- i had been wondering how you are....my figners are crossed that you can begin to make some progress..

Johanna
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Old 06-04-2007, 12:06 AM #4
finz finz is offline
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Ugh....that whole experience sounds awful ! I'm glad the acute lupus/allergy stuff is over now.

Good luck with the PT. The myofascial release work that mine did really helped my symptoms a lot. Still not where I want to be, but better than before
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