checking back in. cross posted in limboland

[chefaid90]

its been awhile. i needed to take a break from pure frustration. I have had it with my neuro and my muscular neuro. my neuro wants me wants me to see the mus.neuro but he wants to wait to see me any further until my mom gets a muscle biopsy and he gets the results. so here i sit, in pain, fatigued, and just down and out. my mom has supposed to have been getting this biopsy now for months but she "hasnt been able to cause she cant get time off work cause another lady is out etc............." so i am in another limbo now. and my neuro doesnt really do nothing for me. They are the only ones I am able to see esp since the the muscluar neuro is the only one i have found. I have been given no meds no nothing. I cant take being in pain and no one is doing anything about it. No one seems to care just how much i hurt, how much my life style is going down hill and fast. I dont know who to turn to. I dont know where else to go. I go to a big university cause that is where my insurance sends me. Where else can I turn? I have an appt with the neuro on the 31st and no appt with the muscular neuro until my mom has her biopsy. I cant keep going on like this. I just cant. My muscles hurt, the tingling, burning, hyper sensitivity, the bladder problems, the muscle weakness, fatigue, eye problems, sleep problems, memory problems and so much more just need to go away and the biggest one that needs to go away is the falling. sorry about my rant. I am just so fed up. my pcp is still sure its ms but my neuros say they dont know and only time will tell.

[chefaid90]

i did have an mri but it was only with a 1.5t machine. my neuro wouldnt write the script for it to be on a 3t machine said i didnt need it. I am finding it difficult to find a new neuro that isnt tied to the big university around here. I want to find a new neuro who isnt tied to the university so that I can have a fresh pair of eyes looking at my case that way they arent looking at my past results and coming to conclusion before they get to examine me.

[Natdocwv]

I have noticed no mention of an MRI you do not need a specialist to order this test. If you have MS, this in combination with a complete history and comprehensive physical exam will establish a diagnosis. Make sure you have your MRI with and without contrast and include the spinal column. Have them put it on a disc so you have a record and a trained radiologist can interpret it for you.
Sorry you are getting the run around but please remember you are in control of your life and health. If you do not get the answers you are seeking then find someone else you  can trust.

[LilMinnie]

I am glad your DH is going with you. My DH is such a "no nonsense" kind of gut and I very well may take him to my next appointment. He thinks of so manytthings after the fact and I am just not that quick on my feet any mor .

I am sending love and prayers your way!

Hugs,
Minnie

[chefaid90]

my husband said he will come with me to this appt with my neuro. hopefully he can get through to her that i need treatment not just another appt in 3months. and to be waiting on someone else to get a test done so i can get help.

[LilMinnie]

Let's do it! I'll start a thread. Let's get that bonfire going and roast some weiners! Are you with me?! Put on your long-johns, get a coat hanger and gather 'round!

[vwick77]

hahah I say BRING THAT BACK !  We could all share some great ones !

[chefaid90]

thats funny. stupid doctor wiener roast

[LilMinnie]

Sadly, it appears this happens a lot. I've read a lot of the old posts from when Quixwas here aand they used to have stupid doctor weiner roasts. Perhaps we need to bring back that tradition. Won't help our situations but at least we'd get a good laugh! ;)

[chefaid90]

i have been told by my old pcp anything from  i am to fat, to lazy, to sedentary, to stressed, over worked, you name it. so i could see someone saying your pants are too tight.

[vwick77]

Minnie you made me laugh !!  YES She said my pants were most likely to tight and causing restriction LOL hahah Glad I got a giggle.  At the time , no giggle but now I just look back and pity that Doc !

[LilMinnie]

I don't mean to hijack, but really, YOUR PANTS WERE TOO TIGHT?! I had a neurologist who told me all my symptoms would go away if I took a muscle relaxer before bedtime. He didn't even give me any neurological tests. I saw him for about ten minutes.

Ugh, where do these people come from? Are they just burnt out and jaded? And then they put us throughthis hell , say we are imagining it, and then WE get labeled as crazy!!

So sorry for the rant, but just wanted to let you and others know that I understand.

Hugs and prayers, Minnie

[vwick77]

Soooo sorry your going through this!!!

What u need to learn to do is to be your own advocate!!  No one can do that better then u !!! You know your body and what your going through and the Doctors work for you!  Your PCP sounds like he/she suspects something and I'm sure they will refer out to any other Neurologist!  Ask for a specialist, one that can diagnose, and treat if it is indeed multiple sclerosis.

It takes time to learn this but I went through a neurologist that told me my pants maybe were to tight or that I needed better sneakers then what I was wearing.  It can be a joke!!!

The greatest advise I received from Sarah on this board was to write a brief shortened up history of my symptoms over the years into a "timeline". Do this for your potential new Neuro.  My new MS specialist appreciated that timeline and he didn't have to go through my whole history ( which we all know here that can be exhausting).

Good luck, stay strong and focus on your needs right now and answers!

Wellness to u!
Valarie

[chefaid90]

i will try to get it when i see my neuro on the 31st.

[Guitar_grrrl]

You have the right to have copies of your medical records.  Exercise it.

[LilMinnie]

Hi!

Oh, I so understand the frustration of the diagnostic process.

Are you saying your neurologist won't give you the results of the EMG?

As much of a jerk as my first neurologist was, when I physically went to his office and asked for my report, they gave it to me. It is your right as a patient to be able to get those results! I am going to have to go to thehhospital where I had my LP done to get my results. Inconvenient, yes, but they have to give them to me.

I wish you luck and blessings. It is so hard being sick and having to go through all the testing.

Hugs and prayers, Minnie

[chefaid90]

i cant get the results of my emg/nvc i was only told it was very very slightly a problem. my reg neuro sent me to the muscular neuro cause she didnt know where else to turn. i will ask my pcp about a referral when i see him again in about 3 months. thank you all for the help.

[Sailorsong]

If the EMG came back normal that in itself indicates you don't have a problem with the muscles. So it makes even less sense that the one Neuro wants to have the result of a muscle biopsy from your mother.

If I were you I would be demanding my PCP to refer me to that MS Neuro for a second opinion.

Dennis

[kwarendorf]

There is no biopsy, on anyone, involved in the diagnosis of multiple sclerosis. Nor does the the AMA list Muscular Neurology among its specialty groups and codes.

[chefaid90]

my pcp was the one who referred me to the neuro i am seeing now. i am not sure why they wont do the biopsy on me other than the neuro saying since my mom if far worse than me he wanted to see what her biopsy said first. they have not done a biopsy on me yet. I have left my mom to take care of her own issues but when my muscular neuro is waiting on her results of a test she hasnt taken yet and wont see me again until she does its a bit aggravating. and the only ms specialist around works in the same office as both my neuros do and neither of them believe its ms cause the tests, blood, mri and emg all come back normal. I dont know where else to turn to get some answers.

[kwarendorf]

I agree with Pastor Dan. Ask your PCP for a new neurologist, one who specializes in MS. All of the blood test you mention typically do come back clean. They are done to rule out other cuase for symptoms that present. Don't give up. Yoou're the only one you can count on!

Kyle
PS leave your mother to take care of her own issues and focus on yours!

[Sailorsong]

This doesn't make sense to me. Have they done a biopsy on you? It seems to me if it were a genetic thing they would find what they would be looking for in your mother in you without having to wait for a biopsy of your mother.

Dennis

PS can you ask your PCP for a referral to another Neuro?

[chefaid90]

i still cant get a dx. my pcp says its got to be ms, but my neuros arent sure cause my tests come back clean. and i mean all test from lyme, to b12, to everything else under the sun. i dont know what my moms tests come up as she dont tell me. i am mad and cant find anyone else. i live in a really rural area and have to travel over 50 miles one way to go to these dumb appt. where they do nothing much and give me no treatment plan other than to tell me it can take years to finally get a dx.

[kwarendorf]

Why are letting this doc do research rahter than treating you?  I would find an MS doc who is willng to treat you as an individual.

Kyle

[chefaid90]

we have similar symptoms but there are some differences. she also has the dx of fibro and i dont (have no pressure points that are tender) she also has other problems that i dont have and i have problems that she dont.