any help and advice for tackling neuros

[harleon]

Hi all,
This is my first time  on this forum ( not done anything like this before!),I am reaching out of the solitude in chance of finding some help,advice and fellow sufferers of this soul destroying illness that most " healthy " or medicals need to seem to want to quantify as some sort of imaginary lurgy !....which we all know too well that if they had to suffer with the symptoms and pain that we endure they would self diagnose and treat in a flash !!
As yet I am still waiting for an mri... after falling through the nhs net at neuro dept for the appointment after 7 mnth and 2 referals from gp!! oh and numerous phone call from myself chasing....they lost my paperwork!
Here I am going off my head with stress and worry on top off all the usuall symptoms ( and more as I also have thoracic outlet syndorme due to an xtra c7 vert which traps the nerves in my neck and gives me numb arms, tingling e.t.c and killer pain, and fybromyalgia, currently dx m.e but feel this is miss- dx m.s and g.p agrees!)..so really need a real confirmed dx to move on and start to rusume some sort of life with my 5 kids (yup 5!) 3 of which are of an age to understand( 21, 20, 18 yrs) and 2 are too young to really understand and still have major demands (3 and 4yrs)...
OH moan moan moan huh ??
Anyone else feel like they seem to be constantly striving to get just someone to understand and say that " yeah we believe you!...we can help!... we know what you may need !

Any response ,comment, advice, or just life story will help me feel that I am not a FREAK or ALIEN....I wait for a reply with great eagerness.

karen

[harleon]

Thanks to all who responded..

Apologies in taking sooooooo long in getting back to you..been a bit La la lately and only just realised and found that you all so passionately left  great tales of frustration and tragic personal tales of trying to convince ( dont know why we have to !!) the health proffessionals.

I am starting a blog of my personal day to day, laugh a minuet wimsical view on this god damn illness and how I try to tackle the miniscule frustrations that affect all so badly and most " healthy " types over look and hopefully lift the greyness of your day with a little "twinkle " of lightness and a giggle or two..

STAY STRONG

******************************KAREN**************************

[Fluffysmom]

Welcome, you picked the right place to come for support, caring, and information.  I joined in the early part of last year, after waking up with tremors and fatigue, having an abnormal neuro exam at my GP, being sent for a brain MRI, and having the report read  something like multiple white matter lesions....most likely to be multiple sclerosis.

I've been through 3 neurologists, the lastest a MS specialist.  According to them, my lesions are not typical for MS, and wrote me off as having small vessel ischemic disease.  I thought I had that taken care of when I consulted with my cardiologist and he sent a fax saying that I had no cardiac risk factors for SVID.

Unfortunately, my MS neuro said it made a difference, then ordered my long-awaited 3Tesla (high powered) MRIs to "rule out demyelination versus small vessel ischemic".  The reports came back awful; incomplete, many mistakes, saying I had linear spinal lesions in both C and T spine.

MS neuro called and said that my MRIs were unchanged, that those weren't spinal lesions, and we'll stay the course (translate; do nothing for a year or until something severe happens, I  think).  It is clear to me that I cannot continue with her as my neurologist, but I don't know where to go next.  

I'm supposed to hear from the MS Clinic this week about switching to another specialist or neurologist, but I don't know if my experience with them would be any better.

Anyway, I've been chasing tests and test results for 15 months or so, trying to figure out the best way to "tackle neuros".  By the way, I loved the title of your post!

My first one I knew was a loser and walked out after the first appointment.  The second one I stuck with for three visits, and got some blood work and an LP done.  She said I no longer needed further neurological work up.  Huh?  What about the neurological symptoms?

I tried to get in to see a neuro that I'd heard was good from a forum member , but she read my chart and said I needed to be seen by an MS specialist.  There are some fairly recent posts by me about my experiences with her, if you want to have some clues as to when to know it's really NOT working out with a neuro.  Oh, and some journal entries on my profile page.

In the process, I've learned a lot about advocating for myself, about MS and other autoimmune disorders, and how wonderful it is to have the support of this forum.  I know you are in a different health system, but I'll be looking for your posts to see if I can be helpful with what you're dealing with.

Get comfy, read some Health Pages, and feel welcome here.

Take care,

Kathy

[HVAC]

Karen,

You have a right to be frustrated. I freaked out and it did me more harm than good.

I go to the Dr. for medical to the forum or MS Society for support.

  I am newly diagnosed. I have had three Neurologists not by my own choice and hear the one I have is retiring soon. That means all of his patients have to scramble to get an appointment for the other MS Specialists which take a year for an appointment. One of the MS Specialist is into research and does not like people. I live in a big Medical Center of the Country and we have few MS Specialists and a high concentration of MS cases for the U.S. We keep losing Specialists.

I have a nurse case manager who is MS board certified and meets with nurses around the world. She has instructed me on how to make the best use of the Neurologist's and my time together which is 15 minutes tops every six months.

Interestingly my nurse told me UK has one of the highest ratios of MS and the NHS cannot deal with it nor can Canada's.

In my own case now that I know why it takes so long to be seen or have tests I am not as frustrated. I no longer felt like I was falling through the cracks. I felt fortunate to have my MS Specialists. My first Neurologist was in the midst of taking a job in another town when he said I Probably had MS and needed an LP. I did not get a Dr. to do the LP for two years and there was no doubt of diagnosis when I finally got a Neurologist to do the LP.

Hang in there,
Alex

[Heather3418]

Welcome to the Forum.  You will never be sorry that you joined this group.  I have been a member for two years.  If you need advice, caring, compassion, a shoulder to lean on and the ability to share with others, you have come to the right place.

There are a few on the Forum that are real experts with alot of things medical.  I hope they will be able to help you with the things, we laypeople can only offer of our MS journey's, in LimboLand and the Diagnosed.

I am so sorry that you are not feeling well AND having to deal with nitwit doctors and the "system" as well.  We will do all we can to help.  You are never alone, now that you are among friends.  That's a promise.

Best Wishes,
Heather

[sllowe]

Hi Harleon,

Welcome!

Wow - what an age gap!!!!!!! You are a busy lady, no doubt.

Before I came here I never posted on a forum.  I've never left here as all are family.

I'll tell you I have no idea why it is that patients have to keep track like we do.  Chase things down, etc. Seems not many are so thorough anymore.  I've had to do it myself.  With spinal tap results even - that's a whole n'other story.

Hope you enjoy yourself here and get to know us a bit.  I'm sorry you have no answers yet, and have to endure so much pain w/your nerves - just reading that gives me pain in my neck!

thanks for joining us
shell

[Lulu54]

Greetings Karen from the other side of the pond,
We bellyache about our health system here in the US, but its frustrations are nothing compared to what you battle with  the NHS.  Getting lost in that system must take incredible determination to get *found* again by anyone.

I have to tell you I chuckled when I ready your post title - *ADVICE FOR TACKLING NEUROS* - My immediate instinct was to tell you to be sure to wear a helmet and pads because those neuros can be pretty rigid and hard to take down!  :-)


You are not a freak or alien - you are like so many others here deserving an answer and not getting one yet.  You probably know that over half of our forum members are like you, living in limboland waiting .  I am among the lucky and have a dx of MS so I have no personal tales to share.  I know others will come along though and be happy to commiserate with you.

In the meantime, my best to you and your family
Lulu