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Lumbar puncture - my next step in my journey
Neuropathy | Last Active: Oct 11 6:59pm | Replies (23)Comment receiving replies
Hi @loriesco
The results we negative. So good thing there but it still means than my neurologist has no idea what the underlying cause is after many tests.
I'm frustrated. This procedure caused a massive nerve flare up and I told my wife that with the pain this test had caused we better get an answer. I was sure after all the other tests this one was going to be the one to say "you have XYZ thing"...
I should be happy it was negative I suppose. My neurologist thought (after all the other wrong guesses of his) that I have CIDP and this test would confirm it. He was wrong again.
I'll just lay here in bed in pain all day just thinking about the test results.
The neuro wants to follow up in four months so I have to wait that long to discuss this with him. 🙁
Replies to "Hi @loriesco The results we negative. So good thing there but it still means than my..."
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Good morning @mayoscout! I have some thoughts -
do you go to the VA? (only?) if so, can you get referred out?
I just started seeing an amazing doctor and learned tons from him! He deals with spinal cord traumas and how muscles get rigid because the NERVES are damaged. this causes a lot of pain. This gets treated in a particular way with particular meds which work in particular ways on nerves/muscles coming out of the spine.
2) I believe there is HOPE for you. Just like for me! I had a miracle happen after 30 years with severe arthritis pain. turned out it is gouty arthritis which flares and doctors kept blandly telling me it is the Osteo arthritis for 30 years! Testing for RA (rheumatory) kept coming back negative. I, too, was always disappointed in the negative result because I HAVE something that keeps on flaring! 30 years! and I got the answer HERE from someone who mentioned tart cherry capsules. A dang supplement!
3) You seem like a great guy. I see/read you are not out of the fight. Some days are bad so have an interest - which is manageable. (sometimes its just breathing deep!). Just this morning I was reminiscing my spine surgery recovery when I'd get up and all I could do was have coffee, look out the window and read for a bit. I had something really absorbing to read.
4) recovery from a flare: wait. patience. breathe deep. wait. patience, breathe.
5) be kind to people. You do get a choice. Anger is a mask for pain and hurt. Look at your anger, frustration, hurt and PAIN. Breathe. Wait. Patience.
6) Try different things: acupuncture for the pain. DEEP MYOFASCIAL TISSUE RELEASE. Make them pay for it for you if you are VA.
7) Nerve pain is the worst. its phantom and its referred. You've got to find a doctor who gets to the source of the nerve pain. Period. A really great neurologist is probably what you need. I'm guessing at this here.
I'm happy to write with you on the side. I have tremendous empathy for my military family with complicated medical issues.
I had a wonderful husband with HMLA 169 who suffered with disability: TBI, PTSD and late onset schizophrenia who self medicated and became unsafe to be around. I always pray for his recovery. I helped as long as I could until he became unsafe to be around.
I am so glad you have a super supportive wife. It takes a village, you know? I am sorry the medical field can't help you right now but please continue to ask, learn and try different things. One day, you will help others!
Semper Fi,
Lori