Frustrated with no answers

[tattitude]

I have been trying to find out for almost 4 yrs now whats going on with me. MS or not. It all started in 2006 when i got out of bed to answer my door and i fell straight to the floor. this happened 5 times in a row and i eventually just crawled to the door. It was as if I didn't have legs, no feeling in them at all. I didnt think much of it since it went away. About 10-15 mins later, I was fine.

In April of 2008, I started having numbness in my left arm from my armpit to the first 3 fingers, that lasted for a couple months. In July 2008 i started noticing that i had a big black blind spot in my left eye that did not go away. I thought at the time it was just because i was online too much. A week later i finally went to see an eye doctor and he rushed me to see an eye specialist. They told me i had a serious disease and needed an MRI right away. The MRI came back clean, but they sent me to a neurologist.

The neurologist did a Visual Evoked potential test. He came back in and told me he was positive i had MS and wanted a spinal tap. The spinal came back negative and he ordered another 6 weeks later. Again it was negative. I had to stop seeing this doctor due to my husband losing his job and insurance. I now have to go to the VA to a neuro. I have been through many MRI's, they told me that i had a lesion on my brain and a few on my spine, but newer MRI's showed no lesions. They were just gone. They also had thought they spotted an anurism in one of the MRI's, but 3 days later with a repeat MRI that was gone as well.

I have been diagnosed with Optic Neuritis in both eyes, the left being the worse of the two. My vision in that eye is 20/800 without glasses. I now have numbness on the entire left side of my body from my face to my feet. I get shooting nerve pains, and severe eye pressure when whatever this is all flares up. Then it all can go dormant for a month or few. The neurologist has changed his mind over and over about if it could still be MS or not. He is a MS specialist.

I was also sent to see a Neuro that specializes in migraines. He had no idea what to do with me, said he didnt have a clue what was happening. I am going for an EEG next week to rule out seizures since my daughter was just diagnosed with this last yr. I have been tested for Devics disease, Lyme disease, Lupus. Everything comes back clean. I can walk fine most of the time, but do have moments of weakness in my left leg. I have moments where i can't say what i'm thinking as well, and moments where my kids ask me questions and i just sit there unable to even think or answer them.

I'm so lost and having a horrible time getting my doctor to listen to me and not blow off my symptoms. Anyone have any ideas?

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[WACVet]

Tattitude, I empathize with you using the VA system.... seems you rarely get the same Neurologist as they are all students. I've been fortunate that the "new" Head Neurologist is VERY active with the patients at my VA, and he actually listens!!

Might I suggest that you ask the Neurologist to actually review your MRI with you, not the report, but actually LOOK at the MRI. Too many times they don't have the time to look over the MRIs and just rely on the reports.

It's great that they are trying to rule out all other diseases, but it's also so very frustrating, not knowing why you are experiencing the symptoms.

[GEM]

Keep a journal of all your symptoms, when they happen, how long etc. This will be very useful in discussions with your neuro. It sounds like you're having the classic limbo experience.

[tattitude]

GEM

Thanks i usually try to tell my neuro stuff, he just doesnt have the time to listen to me. He likes to rush me because he sees too many patients a day. Usually has one scheduled every 15 mins. Thats the reason i joined here in hopes that someone out there has answers to why these things are happening. and their experiences. No doctor can tell you what someone living with the disease can.

[Waydwnsouth1]

I can truly understand your plight. I went through 4 neuros over a 7 year period before getting my dx. The first neuro that said he thought it was MS ended giving me a rx for depression. Still I was having sx. The second neuro, a MS specialist, said it was MS. Then I went for a follow up visit and he wanted to put me on something for depression. We had some choice words to make a long story short and I fired him. He called me a few names and I left. Then went to another neuro. Had lesions all over my brain and was having terrible sx. She had no idea what was wrong. I took 2 years off. Then I started having serious dizzy spells and took a fall. Went to PCP who sent me to a 4th neuro. At first during the interview he said it did not sound like MS. Then he did a neurologic exam. I failed it terribly. He looked at me and my DW and said you have MS. So he did not have any preconcieved ideas he then read all my test results from my other neuros. He was amazed that I had not been dx earlier. Started Avonex last week.
All this to say, keep good records, get your test results and keep them together. Be persistant! We know our bodies far better than our docs do and we know what is not normal.
Good Luck to you as continue searching for a definitive answer.

[photomama]

Limbo stinks! But we are here for you!

My best advice (I'm on neuro #4) is to get your symptoms & history down on paper, but get it condensed so the neuro can skim it for the info they are looking for (because most neuros skim).

I was always very thorough about writing every little thing down and taking it in to my appts.

When I first saw neuro #4, I wanted my first appt to go smooth and for us to get straight to the point. So my "neuro notes" are broken down into bulleted items with "symptoms", "medications", "timeline", etc. My neurologist was very impressed by the organization and the fact that she could skim it for important info (like when I had a flare, or what my symptoms were).

I kept things very simple. So symptoms listed as "numbness", "hand tremor", "nystagmus", etc. And then if my neuro had a question about it, or I wanted that particular symptom addressed at my appt, then we expanded on that.

Hopefully this helps! My first three neuros were horrible "listeners", so I did what I could to make sure #4 would be a great listener.

It also might help continuity to have it written down if you are seeing different neuros sometimes, etc.

This is a great place- it is so nice to know you aren't alone here. We're here for you!

[tattitude]

PHOTOMAMA

WOW THAT IS A FANTASTIC IDEA I WILL DEFIANTLY START DOING THAT THANKS FOR THE IDEA. WILL LET YOU KNOW HOW THE EEG GOES WEDNESDAY.

[DonnaT521]

you sound like my twin!

hello Tatt... Ive been on this road for 7 years. I have no vision left in my left eye. I used to have ON about 1-2 x a year. Now It doesnt resolve anymore. Last year I had atleast 6 episodes and my good eye was affected last year. I have 2 small lesions in my brain. I went through a period like you... where the most simple questions .. I could not form a response to. It frustrated me to no end. I have had severely abnormal VEPs for years. I had 2 clean Spinal Taps waiting on results from 3rd that I had a week ago.
I have had problems with my legs, I used to fall periodically. Standing one moment and on the floor the next. I do horrible in the warm weather. Once I lay down at night.. Im done. My legs think thats their clue to give up.
I saw another specialist recently who ordered my Spinal. He diagnosed with me Devics. There is a 30 % serum negative population of people with Devics. I had only one true episode of bad myelitis where I had to take hold of my pockets on my pants to get my legs up and down steps. I couldnt hold coffee cups without dropping them. Handles were very hard for me.
I still cant believe I finally have a diagnosis because I spent 7 years waiting for someone to say YES THIS IS WHAT IT IS. I was diagnosed and undiagnosed with MS more times than I care to admit. I was also diagnosed during that time frame with lupus, early onset parkinsons, fibromyalgia, anti phospholipid syndrome, etc... I was also undiagnosed with all these things .
Dont give up, you arent alone... you arent going crazy... just because an MRI or a Blood test doesnt give it a name.. doesnt mean its not happening... It took me 7 years before they diagnosed me with Devics. Its still hard for me to believe I have a diagnosis. I am going to be starting Rituxan soon. I am having surgery next week, so wont start the rituxan until Im healed from the surgery, because the rituxan will slow healing. Im just hoping my eyes dont act up terribly while Im waiting!
Keep your head up... you arent alone!

[babygirl_vic]

Hang in there!!

Tattitude.

I'm 27 and I was dxd almost a year ago, but have had some of the same symptoms since I was 16-17. I kept getting told that my problems were because of my spine not being straight. I went to a chiro for several years. In 2006 I just couldn't stand the pain anymore, I live in a small town and we got a new dr so I went to him, He ran all sorts of tests and said it was a bulging disc. Therapy pain pills then acted like I was drug-seeking when I said none of it helped!! I was discouraged yet once again!!

This last time I've stayed with it and not given up! (Even though there are times I want too!!) I've beening seeing my neuro since 2008, and have been tested for Everything under the sun!! Like you, ALL TEST NEGATIVE!! I was hospitalized in July of last year with TM. And the MRI's and Spinal tab come back clean. But I was told that because my little town sucks that we don't have the "good" imagining device needed...don't know if I really believe that but ok....

Before July of last year my neuro had thrown the "I think you have MS" around for about a year and a half and I was soooo frustrated that I wasn't being treated and nothing was being "fixed". My neuro's response to my frustration was "Sorry, we just have to wait for something else to stop working." I wanted to smack his head off his shoulders!!

Even though I'm on Rebif (although on a break) I had one doctor tell me that I might have a STD and that could cause my problems, HAHAHAHA!! Stupid jerk!! Two of my doctors are 110% sure that I do have MS, but I'm dxd'd on SYMPTOMS alone!!

Hang in there!!

Hang in there

[greekd3]

Did they inject you with contrast on your MRI?

I have been trying to find out for almost 4 yrs now whats going on with me. MS or not. It all started in 2006 when i got out of bed to answer my door and i fell straight to the floor. this happened 5 times in a row and i eventually just crawled to the door. It was if i didnt have legs, no feeling in them at all. I didnt think much of it since it went away about 10-15 mins later i was fine.

In April of 2008 i started having numbness in my left arm from my armpit to the first 3 fingers that lasted for a couple months. In July 2008 i started noticing that i had a big black blind spot in my left eye that did not go away. I thought at the time it was just because i was online too much. A week later i finally went to see an eye doctor and he rushed me to see an eye specialist. They told me i had a serious disease and needed an MRI right away. The MRI came back clean, but they sent me to a neurologist.

The neurologist did a Visual Evoked potential test. He came back in and told me he was positive i had MS and wanted a spinal tap. The spinal came back negative and he ordered another 6 weeks later. Again it was negative. I had to stop seeing this doctor due to my husband losing his job and insurance. I now have to go to the VA to a neuro. I have been through many MRI's, they told me that i had a lesion on my brain and a few on my spine, but newer MRI's showed no lesions. They were just gone. They also had thought they spotted an anurism in one of the MRI's, but 3 days later with a repeat MRI that was gone as well.

I have been diagnosed with Optic Neuritis in both eyes, the left being the worse of the two. My vision in that eye is 20/800 without glasses. I now have numbness on the entire left side of my body from my face to my feet. I get shooting nerve pains, and severe eye pressure when whatever this is all flares up. Then it all can go dormant for a month or few. The neurologist has changed his mind over and over about if it could still be MS or not. He is a MS specialist.

I was also sent to see a Neuro that specializes in migraines. He had no idea what to do with me, said he didnt have a clue what was happening. I am going for an EEG next week to rule out seizures since my daughter was just diagnosed with this last yr. I have been tested for Devics disease, Lymes disease, Lupus. Everything comes back clean. I can walk fine most of the time but do have moments of weakness in my left leg. I have moments where i cant say what im thinking as well, and moments where my kids ask me questions and i just sit there unable to even think or answer them.

I'm so lost and having a horrible time getting my doctor to listen to me and not blow off my symptoms. Anyone have any ideas?

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

I have been going throught the same thing since I was 16. For some reason i have not had any of the 3 neurologists order spinal tap or contrasted MRI. Was your MRI with or without the injection?

I hope you are doing well. I haven't read a post such as yours that made me feel someone else understands what I'm going through with pain/disability, but no answers...

[Shallwearpurple]

STD

Syphilis can cause some of the same symptoms as MS. My new doctor tested me for it, but he didn't tell me. It was just mixed into all the many blood tests he did. I looked it all up when I saw the paper listing all the blood tests and was, at first, insulted.

I've been married to the same, faithful man for 23 years. I was a good girl when i was young. I'm a Sunday School teacher!

Well, I settled down. He was covering all the bases and doing so in a respectful way by not mentioning it to me unless necessary. Still, I'd like doctors to tell me everything they are testing so that I can tell the next doctor what I 've already been tested for when I fire one

I like this doctor. He's not getting fired. When I returned, he very sheepishly let me know that I don't have syphilis but he had tested for it. He looked as if he was waiting for a bomb to fire at his head. I just chukled and said something like, "Well, that's not earth shattering news, but thanks for sharing." I gave him a big 'its okay' grin.

All these years, and I didn't keep my own medical records. This doctor gave me an exact copy of what the lab sent to him for me to keep in my records. I'd like to see all the lab tests from previous doctors. Wish I'd kept those. So...now I'm keeping my own file with copies of every test I have from now on. It would have been nice to know if another doctor ran that test and I could show it and refuse repetitious, unnecessary tests.