[Trixie]

Hi everyone:

This is my first post. My name is Michelle. I just found you last night and I am so glad I did. I have been reading old messages and wow, this is me! Here's my background:

Everything started 5 years ago with a really bad illness, initially they thought (and I have been monitored for since) lymphoma. My L supraclavicular lymph node (that's the one above the collar bone) swelled along with symptoms of night sweats, L facial numbness, L arm/finger (4th and 5th) numbness, extreme fatigue, dizziness, etc. Turns out no cancer. But ever since I have been experiencing most of these symptoms.

Seven months ago, I awoke to terrible shoulder pain and swelling. I have been to PT (which made it worse) been on several drugs, been told I'm aging (I'm 36) and a host of others. The pain then started shooting down my arm, into my chest, my whole upper left quadrant was swollen, my face swelled terribly, and numbness in face, arms, shoulder, and fingers got worse. I even had the sensation that the L side of my face was drooping, but looked perfectly normal (except for some swelling).

I recently switched doctors, and I do infact have a slight impingement, probable frozen shoulder, and tendon damage from the impingement. I am scheduled for surgery April2.

After seeing the Neurologist a couple of weeks ago, he told me I also have idiopathic brachial plexopathy. He told me this was an inflammatory autoimmune attack of the nerves. Since, I've been researching, because all the other weird symptoms just didn't fit. Then I found you. It all makes sense now....

I also read a previous post, and althought I'm still in research mode, the autonomic neuropathy also makes sense to me now.....

In addition, I am scheduled for an endoscopy next week beacause of "gastritis" issues, my face feels like it is sunburned at times, my vision has becomes very strange, my L ear and throat have a sense of "fullness", my left arm sweats, my night sweats became drenching again during my episode, I have dizzy episodes, raynaulds type problem (never diagnosed), I even went to the ER thinking I was having a heart attack, etc., etc., etc.

I can't wait to bring this info to my new doc. All this time I've been monitored for cancer, lupus, in my head, you name it. I wonder if the swollen lymph node and removal attributed to this, as this is when everything started???

Question, when in a flare up, do you feel "unwell"? At the worst stage, I felt like I had been hit by a Mack truck, zero energy, could only walk for a short time, if I did anything, was in bed the next day, slept a lot, just overwhelming fatigue and malaise. And what about rashes? This one I can't seem to find a reason for. Oh, and urine retention? During the "episode" I realized I wasn't going, and when I did, it was very little, even though my water intake increased tremendously.

[astern]

Originally Posted by Trixie

Hi everyone:
Everything started 5 years ago with a really bad illness, initially they thought (and I have been monitored for since) lymphoma. My L supraclavicular lymph node (that's the one above the collar bone) swelled along with symptoms of night sweats, L facial numbness, L arm/finger (4th and 5th) numbness, extreme fatigue, dizziness, etc. Turns out no cancer. But ever since I have been experiencing most of these symptoms.

DeJaVu!!! Yes, long ago, after my first child, I became very sick for 6 weeks, with a lump just above my colar bone. I was told by a D.O. that my T cells were off and sent me to an oncologist. Onco. did a biopsy of the lump and got back 'air' - nothing! He said it would resolve itself and that it was likely cat scratch feever, contracted from metal cuts (I worked in a sign shop). But I was puking for 4 weeks straight. Lethargic, lo feever, nauseous. I believe it was my TOS being aggrivated by the delivery.

Originally Posted by Trixie

Question, when in a flare up, do you feel "unwell"? At the worst stage, I felt like I had been hit by a Mack truck, zero energy, could only walk for a short time, if I did anything, was in bed the next day, slept a lot, just overwhelming fatigue and malaise.

Yes. This is acompanied by intense level 10 pain the first day. Not so much the other symptoms you mention - at least for me.

Welcome, and glad you found us!

Anne

[nukenurse]

Swelling is seen in Pagett Schroeder wherre there is venous obstruction. Perhaps a vascular ultrasound might bbe beneficial for you. PS usually occurs in young, physically fit people (usually males).

Welcome, I hope you find some answers.

[nukenurse]

What kind of shoulder surgery are you going to have and how is it supposed to help resolve the symptoms?

[Trixie]

Originally Posted by TOStrojan

What kind of shoulder surgery are you going to have and how is it supposed to help resolve the symptoms?

The surgery is for the impingement. My acromion (bone at top of shoulder) curves downward and needs to be shaved down, the tendons have been damaged from rubbing against it and may need some cleaning up, and he is going to surgically release the adhesive capsulitits, then I'll be hooked up to a machine that will manually moved my arm/shoulder about. Totally seperate from the brachial plexopathy, according to Neurologist.