Looking for support as I seek diagnosis

[JM767]

For two years now, I have been experiencing symptoms that have taken me to three different Neurologists, and have not gotten a diagnosis.
Main Symptoms in order of flare up;  Balance trouble..Dizziness..Hand coordination trouble..trouble with memory..problem solving. This was the first flare up which came on suddenly..got worse over a month's time and then subsided.
I had a couple of these flare ups over 8-9 month period.
Then, in Sept. 08, I had another flare up with all the symptoms above, but also effected my left foot. It felt"heavy" and did not respond correctly.
I began having real trouble walking..legs very weak,had a number of falls..got so intense I ended up in a wheelchair for about 4 weeks and was sent to physical therapy.
During my second visit,the Neurolog. conculed that I had a "phyciatric conversion disorder" (converting emotional issues into physical symptoms)
I was crushed! She asked me to get a second opinion and to go to psychiatric dept. to take a neuro-pyscological testing. It was extremely hard to do, but I followed her request because I want to know what is going on.
I took all the tests and the results said that I DID NOT have any conversion disorder, and, I HAD NO MALINGRYsp? (I was not faking or exagerating my symptoms. That was in Dec.08
So the Doc. was clearly wrong.

Now I'm stuck, mad, and so want a diagnosis so I can get my mind around  what I"m dealing with!!

In Jan. (last month) I started experiencing numbness in hands and feet..Burning for the first time on inside of both arms/amkel feet. Tongue has been numb and I've had trouble swallowing. My eyes have also been very blurry for the first time (especially right eye)..still loosing my balance and trouble with walking.

I've had MRI on brain and spine. Brain MRI showed a bright spot that the radiologist was a little concerned about, but my Neurolog. said that he did not think it was anything to worry about. He said my spine showed "no signals."

I've read so much about MS and I am more and more convinced that this is what I'm dealing with.
I can not get a diagnosis and feel like I don't know what to do next to get help.

Your support, ideas, story would be most welcomed!
Thank you for taking the time to read this lengthy post.

[JM767]

Thank you so much for writing!

Sounds like we have some common experiences. After the second Neuro said she felt I had conversion disorder and referred me for neruo-physcolog. testing, I of course was devisated. However I was so glad when the tests came back to say that I did not have a conversion order, and I was not "faking or exagerating" my symptoms. So clearly her "diagnosis" was wrong. So with that now ruled out, I feel I have some leverage.

I'm glad for your diagnosis! Regarldless of what the doc wants to call it, you know what you are dealing with!!  Mild to severe....it's still MS, and it still affects our lives.
As I mentioned in my last post, I am in a system where you have to see docs within that system, and I too have to deal with them "justing printing out my background." Regardless, I will remain determined to get help.

Thanks again for writing!! All the best!

[JM767]

Hi Shelly!

Thank you so much for your kind welcome! I can't even describe how great it is to have this support from others who have/are having like experiences.

I have requested my full report, and can't wait to see what is written about my MRI's etc. that I may not have been informed of. I am a memember of a health group where you can only see other docs in the same system, and it presents it's own challenges because each one has computer reports of the previous neuro's visits... I feel it's hard to get a true "first time" visit with another doc.
Anyway, I will keep insisting on follow ups and remain as positive as I possibly can!!

Thank you again. Your support means so much!!

[Eyesnlegs]

Hi JM

You've found a great bunch to support you here and the education is great too. I was dx in December 2008 but the neuro insists it is 'mild ms' whatever that means. I think he means that I am not physically disabled .  I have chased around so called 'experts' for years and even been in pyscho-therapy as they convinced me at one point I was imagining it too. Of course that led to years when they just just pinted out my background

Evereyone has given you great advice - take that advice and fight your corner with a sympathetic neuro.

There is always someone here to answer your question.

Pat

[sllowe]

Hi JM,

Adding on a belated welcome from me.

You gotten such good advice so far, and if I were you, and experiencing these persistent symptoms, I'd gather up all of the reports and results so far, and find a new Dr. No matter what it is, you will be well supported and educated here.  I've learned so very much.

I'm Shelly and was dx'd in 07 w/MS, but there are a lot of us who are dx'd w/something else, and those who are still looking for answers.

Very glad to have you with us, JM.  Ask anything.  

Thank you for joining, and hope to see you around!
-Shelly

[JM767]

Thank you for your support!!
All the best-

[JM767]

Thank you for your warm welcome!! I wish the very same for your dx!!
Thanks again for writing-

[ShockedToday]

JM767

Welcome to the forum.  I'm in limboland myself, and know that it is no fun.  Lots of prayers that you find another dr that will help you find out what is going on.

[doni54]

Hi JM767!!

You have gotten some great answers, so I just wanted to jump in here and welcome you to the forum.

I am also undx, and a member of limboland.  I hope you can find a great neuro so that you can get your answers soon.

Take care,
doni

[JM767]

Thank you for your support! I will keep looking for the right doc.
Best wishes to you!!!

[JM767]

Sounds like we've had some of the same experiences! Thanks for welcoming me to "Limboland." That seems a fitting term.
I send good energy your way as you wait to find your next move.
I am really looking forward to getting my records so I can read them for myself!!
Thanks again
All the best-

[slightlybroken]

Welcome to the limboland club!......There is a lot of wonderful people here so I hope you decide to stay awhile....Every once in a while, we have a bonfire where we roast really bad neuros who make us feel bad. I think your previous neuro would qualify. Those types of neuros, to me anyways, don't have the answers to what is going on with us. So instead of admitting this, they blame the patients state of mind...It's stress, anxiety, or a conversion disorder. Those neuros I especially like to roast. But I won't touch it..not one bite..it's chewy, it's tasteless, and they are spineless creatures. LOL

I'm slightlybroken...because that's how I feel most of the time. I'm unDX too. I've went through 3 neuros and I'm currently on #4. I'm taking a break from trying to find out anything. My current neuro tells me they know something is wrong...they just don't know what. Neuro #3 said my problems were from stress, so I can relate to what happened to you.

You'll learn a lot on this site and meet a lot of good people...DX and unDX (limbo). You'll get a lot of good advice. Getting your records is a great place to start. I don't know how many times people have had a neuro tell them that they had a normal MRI when it wasn't. So welcome to limboland...and I hope your not in limbo too much longer.

[GrannyJo6]

This is a great support site. You really do have to be proactive. Ask for a referral to an MS specialist neurologist and at the very least, get a second opinion. Most insurance companies are good with that! Best wishes for a quick diagnosis!!

[JM767]

Thank you...It does help to know that so many others have gone much longer than I without getting a diagnosis. I know that I just have to keep up the fight. Yes, reading others stories is a great support.

As far as the "bright spot" on my brain.. The Radiology report said that they were unsure about the bright spot and put in the report that it could be something to look into.
When I saw my doctor, he said that he didn't believe that the spot was anything..said it was -Unidentified Bright Spot- which is found alot in scans.
I did not ask to read the report myself, but I am requesting a copy of the radiologist full report.
I immediately questioned,that if the radiologist who reads scans all day long feels that the spot is questionable they probably have good reason?
I will know more when I get the report.

Thanks again for your support!!! Means a lot

[JM767]

Thank you! You are right, I have to keep insisting on more test. The doc. said that since my spind MRI didn't show any signals, that a lumbar puncture was not necessary...
I will continue pushing them to give me answers! I agree about some docs not giving a damn. I know however that I will/must find one that does.

Thanks again!

[JM767]

Thanks so much for taking the time to write! I will work on getting my full medical report/test results etc.. I've been keeping track of my symptoms on a daily basis too.
Great advice. Comforting and appreciated!

All the best

[Lulu54]

Hi JM767,
Welcome to a great forum with many limboland members like you who have the symptoms but haven't found a doctor to connect all the dots yet.  You have lots of symptoms and deserve some answers.

In the meantime I hope you are keeping copies of every last test that has been done on you and keeping a time line of your symptoms.  Both will be helpful the road.

Be sure to come back often and keep us posted on your journey.

my best, Lulu

[ambrosiawind]

as well i am sorry to hear that you have been run around even so far as to force you into psychiatric assessment.  I too have endured a long journey of very similar symptoms, though thanks to a specialist i saw for something unrelated to my neuro pain and spasms who discovered i was having these issues in an area i was unaware i was even having them ( yeah that was a little long winded) anyway his discovery took me out of that common "it's anxiety" dx so many of us have gotten.  and i think that was in part why my dr sent me for an MRI. its going to take some time, some people here did not even have a dx for more than 10 years (not to discourage you) its unfortunately a reality many of us face. but i can tell you one thing and that is that you have come to a great place for support. many of the people here understand the pain you experience and also what it is like to go without a dx for a long period. for me i find that even just reading the other questions on here makes me feel better, makes me feel so not alone.

so welcome and keep fighting

PS um what did he mean by bright spot ?

[Auspiciousme]

Hello there.  I am sorry you are in this position.  I never went through something like this myself but I can just imagine how terrible it may be.  I got diagnosed in two weeks but within that two weeks I kept going from one doctor to another and I remember I had to insist on a MRI.  My MRI showed 9 lessions and they told me I have MS right away.  But again I insisted on a Spinal Tap which confirms the diagnosis.  What I am telling you is that you have to insist on more and more tests.  Be annoying if you have to!  Some doctors just don't seem to give a dam about the hell the poor patients are going through.  This forum is great and you will get a lot of information and support from everyone here as I did.  Please let me know if I can answer any questions for you.  Best of luck to you.  Don't give up..go back and tell them you want an answer!