back to limbo land

[torikat32]

hey everyone what a week this has been I am still recovering from a relapse March 1st I moved this weekend we lost our house the government help for home owners didn't help us. Our apartment is very nice we moved into a community setting and I am very happy I found  this place ground level and no stairs now that I have to use a walker to get around its better plus the financial relief is a load off my mind. I went back to the rheumie yesterday she said I do not have lupus ( I knew I didn't ) she feels the episode I had in March was transverse myelitis and she spoke to my nuero who said she doesnt know what to do with me another neuro bites the dust the rheumie recommended that I go to a ms clinic and recommended the Lahey clinic in Boston so I  will check it out. I need answers my health is deteriating and no one seems to want to think outside the box because I don't fit the criteria  to a T . so now I will enjoy my new place and still unpacking and look for a new neuro and hopefully get some answers
take care
Kathy

[addicted2harleys]

Hi, Kathy-

I am glad you are on top of things, as far as your past MRI's and such.  :)   Hopefully the syrinx or lesion stays gone.  And I hope you get what you need with the new neuro.  

I'm glad your move is almost done.  That's a relief, I am sure.  That last load is usually the worst one for me.   lol   Maybe because I know I am sooooo close to being finished, ya know?

I went in for some sort of epidural shot in my C5 or C6 area.   My pain management doc wants to try this before proceeding with the Baclofen/Morphine pump.  They knocked me out completely for the procedure.  I am home in bed right now and feel no difference yet.  My neck and cervical spine still gives me quite a bit of pain.  I guess we will see.

He also increased my Lyrica.   I had been thinking that I needed an increase, so that was a good thing.  

Baylee and I were suppose to go visit my dad this weekend.  He lives like two hours from us.  We usually go there for the weekend or for a week or two if Baylee is off school.  I hope my neck doesn't stop us from going....it did last weekend.  

Baylee is doing well, for the most part.  She is experiencing a few symptoms that I worry about.  She gets headaches (not migraines) that Tylenol seem to help.  She gets pains in her rib area that sound to me to be very similar to the MS hug.   I do give her half a vicodin when it really bothers her (maybe once or twice a week).  She is having memory problems, too.  This needs to be addressed because my usually A-B student is failing two classes and had a D in three more.  She wants to be an archeologist so she really needs her normal gpa.

Baylee was accepted into Childrens Hospital, pediatric neurosurgery, so we are relieved about that.  She goes there on May 9th.  I'm going to have to get her into the eye doctor, too, as she is complaining of blurry vision.  

On a good note (for her anyways!!) Baylee got her drivers permit last week.  Wednesday she took her first driving lesson (state law) so she is now able to drive with an adult in the car.  She has to have 80 hours of this before she can get her license.  The instructor said she did exceptionally well and wanted to know where she learned to drive.  lol   Her older brother taught her....he is 10 yrs older than her.

So, we had an appointment in Santa Barbara yesterday and she drove both ways.  This was an hour one way, on busy highways and busy city roads...and a brief getting lost episode.  She also had to go through a small mountain range.  She did really well.  I have given her permission to be the driver of our vehicle when we move to AZ.  She is super excited about it.  :)   That will be an 9-12 hour trip.

I have a neuro-ophthalmologist appointment Monday...back to pain management on Tuesday and the next week I have a neuro-psych exam.  I am hoping to get some answers with these appointments.  I was suppose to go back to physical therapy, too, but have to put that on hold until my neck gets a bit better of control.  Just touching it sets off some narly spasms right now.

Well, I think I just wrote another novel so I will end it here.  lol.  Thanks for asking about us though.  :)   I will have a toast with you when you are finished moving today and can sit and relax for a bit, okay?  :)

Hugs,
Addi

[torikat32]

Hi Addi
the syrinx was found back in 07 or 06 john hopkins and the following scan 6 months later it was gone I always wondered about it could it have been a lesion instead i dont know but I do have the films I always get copies. when it was found I looked it up and yes they can be serious but i wil mention it to the new neuro when I find one. t

the move hasnt been an easy one and i am trying not to over due it but I am exhausted and hurting but it needs to get done house has to be emptied by today so I am taking a break until 3pm then we wil go back and get more stuff and hopefully it will be the last

How are you doing and how is your daughter doing?

Hugs,
Kathy

[addicted2harleys]

Kathy-

You mentioned a possible syrinx.  You may want to stress this with your new neuro.  If it does happen to be a syrinx and is left untreated, the neuro effects it may cause could very well remain irreversible.  

I hope you have disc copies of all of your MRI's?  If not, I would strongly suggest you get them...especially the one that showed a possible syrinx.  Take these discs to your new neuro and have him look at the discs...not just the report.  

I would say that a second opinion on that possible syrinx is definitely in order.  Are you familiar with what a syrinx is and what they do to you?  If not, google it.  It can be very serious.

I'm sorry for the loss of your home and the need to move.  Please proceed with caution...don't wear yourself out.  Good luck in finding a new neuro, too.  Please do not delay doing this, if at all possible.  

Hugs,
Addi

[torikat32]

Hi Lisa I am sad about my house but glad I found the perfect place to live at least for a few more years when my kids graduate they are 14 and my oldest is 17 I am moving south its too cold up here in New england for me but Florida is too hot so the Carolina's sound good to me.

I am taking my time to unpack cant over due it dont need another relapse on top of the one that I am still trying to get over. But I cant stand the clutter and my husband is trying to squeeze a 3 bedroom house plus garage into a 2 bedroom apartment and well its cluttered and a mess and it drives me crazy.

take care
Kathy

[torikat32]

Hi Kelly I have had multiple MRI's of brain and spinal cord my brain has 6 lesions that have always been the same 6 no new one's so thats why the neuro's keep dismissing me and say its not MS my spinal MRI is clear it once should what they thought was a syrinx but next one it was gone . I have been going down hill since this last relapse in March I was using a cane and now I need a walker and you would think that my neuro would be concerned about the dramatic change in my balance but I guess she isnt.I hope my new neuro when I find then will think outside the box we all know that not everyone fits the criteria that most neuro's think its written in stone so if you dont have 9 lesions or more than its not ms.

[LisaJF]

I am so so sorry in regard to losing your "house" to the government.  I can't imagine the heartache that it has caused.  

However, I am glad you have found a nice apartment and it is one one floor.  The moving is a lot though as well as unpacking.  I do not envy you with that.

You're right - another Neuro bites the dust, but it doesnt mean the next one will.  But you keep going until you have answers.  YOU deserve that much.

I too, hope you find answers too and hope that you wont overdo yourself with settling in.  Do it slowly as your body allows.

Sincerely

Lisa

[anon07072023]

I'm so sorry that you have to go down this road - with your disability or with having to move. It's very sad. I hope your new place will give you more comfort.

They had diagnosed me with transverse myelitis, but my symptoms never went away. In fact, they are slowly progressively getting worse. I transferred to an MS clinic/center and they diagnosed me with MS, instead.

I have a feeling that they have already ran spinal MRIs on you? So, you do have lesions in your spine? Or are they guessing that based on your overall symptoms/presentation?  
If you could get into an MS clinic and they determine that you do have MS, then hopefully you're in a postion that you can start one of the disease modifying drugs. This may lessen your future disability.

6 yrs is a very long time to wait to get a diagnosis and start treatment for whatever it is that you have. I hope you find your answers soon.

Take care, Kelly  

[torikat32]

thanks Alex  I need to find doctor house and I know I will eventually get some answers I hope before its to late my physical therapist has already said the next step is a wheelchair and i hope it doesnt come down to that. after 6 yrs you would think some doctor would have some answer but no the search continues . I wont give up just may slow down a bit

Kathy

[HVAC]

Kathy I am so sorry. I hope you find an answer soon. I think in the future Doctors will shake their heads at this time in medical history when diagnosis takes so long. My theory is Doctors are to Specialized and they only can look at one thing. We all need a team of super Doctors like on House. Which half the time is bogus with their diagnoses too.

Alex