before your diagnosis

[monica9679]

Before and during the testing phases did your doctor ever let you know what he thought you had. Also, what did your doctor eliminate before your diagnosis of ms.

Just curious

Thanks!

[SNOOPY]

Although it was very obvious something was very wrong my neuro never gave any indication or was even willing to tell me what could possibly be going on.

I gave vial after vial of blood (8 to 10), numerous x-rays, VEP, MRIs, Lumbar Puncture, Myelogram.

The only thing I did know was I had to go back in for a repeat MRI because there was "something" that showed up and it needed to be redone. He could not tell me what was seen but he did tell me it was not a brain tumor.

It was at the appointment for results of the Lumbar Puncture that he told me I had MS.

[monica9679]

Snoopy.. Thanks for responding.
Another question did you have an mri before the LP?

Im impatiently waiting for my spinal tap appt. The only indication i got was psuedotumor cerebri and that was because i had an eye appt same day as neuro and the doctor sent me wiyh a note to give to the eye doctor lol. Ive obviously looked up everything and i dont feel like i have that.. Maybe its just elimination..i dont know

[rainykatie]

my dx was quick

first ruled out electrolye imbalance

then had chest xray and blood work to rule out lupus and sarcoidosis

my symptoms were 'so specific' that they sent me for an mri

i was diagnosed based on the mri, no lp

[monica9679]

Rainykatie... Thank you for your response.
If you dont mind my asking what was the symptom(s) that sent you to the doctor?

[JerryD]

I was diagnosed after I had several MRI's, a VER, nerve conduction test and Lyme disease test. The dx was definitely based on the MRI's.

[onlyairfare]

I recognized my diagnosis myself based on my optic neuritis. I was having vision problems/eye pain and my regular ophthalmologist told me he was worried I had ON and sent me to a neuro-ophthalmologist. I had already suspected ON, having looked it up in the library (this was back around 1975, no internet, no MRI), and the neuro-eye confirmed ON. Back then, there were some advocacy campaigns for MS charities, and they always showed a young woman in a wheelchair, and the headline was:

MS - Crippler of Young Adults!!

I knew from my reading that MS was my likely diagnosis, but I was busy with school and having kids, and I sure didn't want any involvement with "A Crippler of Young Adults." Because I had obstetrical issues, I had a full auto-immune work up for that, all negative. I didn't have a lot of MS symptoms, mostly ON, which was subsequently treated by my regular ophthalmologist because I didn't want to be "officially" dx with MS (it would mess up my health insurance) and there was no treatment anyway. So my ophthalmologist, my perinatologist, and I knew I had MS (I had had a transient leg weakness during one of my pregnancies, he had seen the ON, and I had an abnormal VER), but otherwise I ignored it.

Fast forward to 2002 when I had a relapse with leg weakness which did not resolve; my ON had always gone away completely. I went to my family doc (by now I'm in a different state, all different docs), he could easily see my flagrantly abnormal neuro exam, wasn't sure what was wrong until I told him it was probably MS. He was not happy that I had never mentioned that before, but he ordered the MRI's (brain, cervical, thoracic and LS) and the radiologic picture was classic for MS so the diagnosis was obvious. He sent me to the MS neurologist for confirmation of the dx and to start treatment.

So I never had a spinal tap, and my diagnosis of MS was made by my ophthalmologist the old fashioned way before MRI - "lesions separated in time and space, tests show no other diagnosis."

[Thinkimjob]

I knew what it was before I saw a neurologist.
Hoped it wasn't MS, but I knew numb fingers and feet and dodgy vision meant it probably was.
And seeing a MS Guide on my doctor's desk was kind of a giveaway.
It was still a shock to be officially diagnosed. Cried like a baby.

[monica9679]

Thank you everyone for your responses! Just all these thoughts and questions going through my mind. I know i shouldnt assume things but i just feel it.. I can relate so well to everybodies.. Its like their writing about me. Nothing made sense before but reading about it and everybodies journey with Ms, everything makes so much sense. Know what i mean. I kinda have a bitter sweet feeling if i have a diagnosis of MS. Finally an answer to why i feel this way but then its like wow could i really have MS.. I dont know. We will see. Thank you everybody for your responses.

[valeriem2220]

I have been in and out of Drs offices for 6 years with vertigo. Finally in March I had a very severe case of vertigo and left side numbness. I went to the ER and they again sent me home with the diagnosis of vertigo.
It didn't go away so I went to my family Dr a week later and he ordered an MRI and didn't tell me that he was actually looking for a brain tumor.
This is when they saw the lesions.
I was sent for an LP which came back fine.
I have gone to 3 different neuros. 1 saying I had migraines, I very rarely even get a headache. I was allergic to the meds he gave me so he took me off of them and never gave me anything different. He just blew me off and went on to the next.

I then went to a city a couple of hours away where Drs are supposed to be great and this neuro was recommended to me by an old high school friend.
He told me I had a very stressful life. His reasoning, because I have children, whom he knew nothing about except for their ages, 24,22,14, and he said my hobby, which is renovating my 100 year old house and I LOVE doing, is far too stressful and I needed to hire someone to do it for me. He wouldn't listen to my history of symptoms, refused to take my list of symptoms and timeline I had written down, didn't look at my MRI and yelled at both my mother and I. Literally yelled at us.

He wouldn't let me talk at all. The only complete sentence I got out was that I didn't think I had migraines because I rarely even had a headache. He told me I DID have headaches because of my "stressful life"
I stormed out of his office after he told me that I simply needed "MASSIVE doses of anti-anxiety meds and to see a psychiatrist" I have found out since that another woman that I work with who also has MS went to him about 15 years ago and also stormed out of his office. I never did get a bill from him...LOL
I had given up...and was extremely depressed.
My mother convinced me through my tears about 2 weeks later to just try 1 more Dr. a local Neuro who my Dad had gone to. This neuro had mixed reviews in the town but my Dad liked him.
I went to him.
He sat with me, went through my list of symptoms, my history and even took my timeline I had written up with dates, symptoms and Drs visits and made a copy of it to place in my file and we went through it together.
He told me that everything I had heard up until then to just forget about and that we were going to start from scratch. I was so happy.

After about 5-6 visits and him mentioning MS, mainly just educating me about the treatments and symptoms, but never coming out and saying I had MS. I finally just had to ask. I said "You mention MS a lot in my visits. Is THIS what I have?"
He then said "Out of all of the MS specialists and MS clinics, if you were to go, 99% of them would tell you that you have MS" I would say that is a definite diagnosis. I took it as one anyway...lol
Then he told me that he was an MS specialist, I didn't even know this about him. He was just a local neuro for all I knew.
I was happy to finally have an answer...but scared to death for my future also and came home immediately and started making serious future plans.

[monica9679]

Valerie...
6 years is quite a long time to be in limbo. I also dont understand why some doctors just dont listen. The patients know what they feel and know its not right.. So why wouldnt they listen.
I hope not to be that long in limbo land but i know its a process.

[Alicious]

When I saw the neuro, I was in the middle of what I now know to be a pretty big flare. The flesh on one half of my body, up to my armpit, was numb but reacted to cold as though it were heat. My other hand had little to no fine motor control. I had intense spasticity in one calf, as well. I was a bit of a wreck.

After about 20 minutes of poking, prodding, and utterly failing the "is this my finger or a sharp pin" test on the numb flesh, the neuro told me there was clearly an issue with my spinal cord. It could be spinal stenosis, I could have a tumor on my spine pressing on the cord, but it was most likely MS, especially since 6 months prior I had had less intense numb flash on that same side, but only saw a GP.

The final diagnosis came after a c-spine MRI showed a very large lesion where he expected it on my spine, a brain MRI with 10+ lesions, and all of the associated bloodwork to rule out other causes came up negative.

So, I first saw the GP for the flare that got me diagnosed on a Thursday, saw the neuro on the next Monday, had MRIs on Tuesday and Thursday, and had a diagnosis (pending bloodwork) the same Thursday. It was a whirlwind.

Good luck finding out what is going on with you!

[monica9679]

Thank you alicious for responding.
Sounds like yours was a quick diagnosis. I would hope for the same, but i know it can be a process. I just have to be patient..