Backtracking on Symptoms and possible begining of illness

[RedFlame]

For those of you know, I have been relating that my symptoms to have started about a year ago.  

I have been thinking about some other times that I had what I considered 'odd', 'wierd' things happening to me.  

When I was 33, I would wake up in the morning with the bottoms of my feet on fire and feeling like there were pinprick sensations pulsating down on my skin.  I also had the sensation on the bottoms of my feet like there was powder on them.  I would look down to the bathroom floor thinking I had used body powder and spilled it.

Of course, I never told anyone becuase I was too embarrased about it.  The itching started then and I have had that problem off and on for years now.  The electric stuff eventually went away.  

Ten years ago I was in a wheelchair for several months.  I was weak and had parasthesia in my torso which is still here.  I assumed it was my back.  My doctor ordered X-rays and after physical therapy I was dismissed from the orthopedic guys and I was able to get back on my  feet.

I am 53 now, I am thinking that this possibly started 20 years ago with an isolated incident?  I'm not sure if the incident ten years ago is part of this or not.  

I see my new neurologist on Tuesday for the results of my LP that was done a month ago.  I was supposed to be seen 2 weeks ago but the office staff messed up.  I don't know whether or not to talk to her about this stuff.  I don't know if she will even be interested.  I am just assuming that my LP results will be normal.  Everything else has been normal except for some elevated inflammation tests---(not elevated enough they say?  

I feel despair about all of this.  I know that many of you have been fighting this much longer than I.

I think that what makes this difficult for me is the amount of loss I have had in the past 2 years.  I lost my home to foreclosure, I lost the majority of my belongings becuase I couldn't get them into my van when I left.  I also lost my partners child that I had taken care of from 4 months to 8 years.  Taking care of his heart surgeries and other medical problems aged me tremendously.  There is nothing else like having a sick child that looks at you after heart surgery asking for "help".  It was devastating!

I now live in a room on the side of an outbuilding.  I pee into a bucket if I have to go becuase the main house is too far away.  

If my LP comes up blank I really don't know what I will do.  I just feel really bad about it.  

I am so tired

[Guitar_grrrl]

Oh, yeah, breaking up is hard to do...

I'm glad you have counseling - I'm about to return to my therapist as well.

I had made up a time line for my visit to UCSF.  I've had symptoms going back to the 80s, and just "incidental baloney", included mentioning some pseudobulbar stuff and a miscarriage in the 70s.  My new neuro neither dismissed this, nor jumped all over it.  It is what it is.  Include everything!

Wishing you easier times...((((big Hugs))))
Guitar_grrrl

[essdipity]

It has all been said.

I'm thinking of you and sending many cyber hugs. You are not alone.

XXX,
ess

[lovemy6monkeys]

Oh Lois,
First, I'm sending you lots and lots of gentle ((hugs)). Like Addi said, I also don't have much advice...other then saying that your symptoms, especially those you experienced at 33, sound very familiar (and ironically, mine started last November, soon after I turned 33!)

I don't pretend to know the pain of losing a child, but I can only imagine.

I'm so sorry you are having such a rough time. I am praying you get answers on Tuesday. So much loss and uncertainty for you in the last year :-( You deserve a break and I hope it comes soon!

Lots more ((hugs)) for you, my friend.
~Jess

[RedFlame]

Hi Addi,

I really appreciate your support and help.

I am seeing a therapist every week, she is very supportive and encouraging for me and what I am going through.  I am on Klonipin for anxiety and Effexor for depression.  

I really allowed the pain part of this to go untreated.  I thought that I needed to wait until I was diagnosed to have a 'pain protocol' that would actually help me function.  My new PCP is going to work on the pain issue for me but I think that will take some time.   I am going to ask the doc on Tuesday to at least increase the Gaba and Flexeril.

I don't know why I am so afraid to ask for pain medicine.

Addi I am so sorry to hear about your sister!  How horrible.  Such a horrible disease and I can't imagine watching her pass!!!.  I'm sorry I didn't mean to imply that I lost a child due to death---I meant that I lost him due to the breakup of a relationship.  I have seen him a couple of times in the past 2 years.  It's a great loss.  

I am not married---I moved to my sisters house in Michigan after the house was foreclosed.  My room is in a separate garage building that doesn't have water or a toilet.  It's an adjustment.  My sister is as supportive as she is able, I think it must be difficult watching your little sister deteriorate.  I don't have much support here---I need to reach out.  

I think the timeline is something that I need to do, it's something tangible.  

Thank you for reminding me that I am not alone---and thank you for hearing me!   lois

[addicted2harleys]

Hi, Lois-

I know you really have been having a rough time of things lately and I am so sorry you are.  I didn't know your living conditions were as bad as they sound like.  All of this surely adds to your stress and anxiety levels....as would be expected.

You already know that I am trying to start with counseling.  Have you considered this?  Especially since you are in that field, you ptobably already know it may help you...at least a little.  I can't remember if you are on any anti-anxiety and/or depression meds?  Maybe that would be something to look into, as well...either getting on them or possibly increasing dose?

I also can't remember if you have completed your time line yet?  That would be something to start with when you see your new neuro on Tuesday.  Since your MRI was so botched up, maybe your neuro can request them being redone?  

Pain can be so dibilitating whther it is physical or mental.  I see in your journal entries that you post about pain quite a bit.  If I remember right, you are on a low dose of gabapentin.  Maybe getting an increase in dosage on Tuesday would be beneficial for you.

The lose of a child is unfathomable and I don't/couldn't wish that on anyone.  I am so sorry that this has touched your life.  I lost my younger sister to leukemia several years ago.  She was diagnoses at age 4 and passed on at age 12.  It is a terrible thing to go through and my heart goes out to you.

DO you live alone  ?  My memory is all screwy, but I thought you were married?  Do you have any support locally?

I guess I am really not giving you much advise, but I just wanted you to know that I heard you.  And, you are not alone.

Hugs,
Addi