dazed&confused (sorry very long)

[daylight1965]

First off Hi all!

Not sure on were to start here on this roller coaster ride for the past two years.
I'll start it at my dx of rrMS in june 2010 . My neuro believed that it had been progressing for years. I had a very new nuero at that time. I also have RA . At the same time my RA was flaring. So my pcp sent me to a pain specialist.
It was at the appt with the pain specialist that I started to question my MS diagnoses.In the waiting room my husband and I heard the staff talking about my Neuro. The'd said that he was terminally ill and leaving his practice . I was very upset as I didn't know any of this. This specialist then seeing my mri and went hummmm you should get a second opinion as he didn't feel I had MS. This of course made me and my husband upset . Because who is he to question my neuro. ? But the seed was planned .

I then called my PCP to get another neuro . . I was then sent to a teaching hospital that reran the brain and spinal mri and emg. Unknown to us that this neuro whom I'd just meet once had left the hospital to start her own practice. So I'm there stuck in limbo with the PA for the next 2 visits . Six months goes by to yesterday (yep totally in all around a year and 1/2 or so my math sucks) I then see this New neuro ( one year out of med school ,oh yeah lucky me) She tells me shock the heck out of us. Brain mri inconclusive ,spinal mri normal for my age ( my other 3 mri showed 3 herniated disc,spur and narrowing hummm) Then she say no neuropathy . This gets us upset. I say to her calmly they only ran an emg because my prior nerve conduction studies are positive for sensory neuropathy. She then remarked that they always do both at the same time. Again I said my test was 30 mins long ,they only did the needle test (emg) . I was not zapped and measured for NCS .

She was upset and then well you should be happy that its not MS . But she then said it probably mental ( lol conversion disorder) and by upping my gabapentin it will "cure" my and I'll be able to walk and live a normal life. She the says she doesn't know why I'm showing positive for the office exams but I'll be fine in a day or two. She then say that she'll see me in 3 months at which time I'll be much improved. The she leave the room with the medical student who was observing . I then hear them laughing in the other room. I broke down at this point as nothing made sense. This neuro refused to check past history . She basically lied about me having tests done but didn't provide any proof of these tests.

Have to say that this was my first and last visit to see the neuro. .
Well today I called my PCP who is ticked off about all this as he has proof it is neurological from my first neuro and prior mri's showing spinal damage. I'm truly not sure what is going on other than I know for a fact I don't have conversion disorder . Idiot doctor. She didn't know that my last job was working in the metal health field.

Well a few hours ago I got it into my head to call my prior doctors number to see if they could recommend another neuro. . At this time I'm told that my neuro (1st one) was never terminally or leaving his practice. grrrr
I explained what had happen and she (receptionist) was shocked that all this happened in this way.

So know I'm waiting to see my pcp on the 16th to explain all this junk ,get a referral to see my first neuro again, and probably be treated for his initial diagnoses of MS. Which brings me here..... If we hadn't believed the staff at the pain specialist I'd never had left my first neuro . ,then again if my brain wasn't in a fog half the time I'd have thought to call my Neuro to see if the story was true. I 'm still shaking from all this .

[b28]

I'm not diagnosed, but regardless, I'm so sorry you had to go through all of that! That is so awful I'd be very upset too. I wouldn't be able to handle it. Hopefully things will start getting straightened out now and you'll get some clarity and answers. Take care and will be thinking of you

[daylight1965]

If it wasn't for the Lord and my family I'd be a basket case right now. When I see my old neuro I can only imagine what he's going to think about his so called illness and retiring. lol

Had it not been for believing a lie about my old neuro I'd have been treated for MS all this time and the neuropathy in my feet and legs may not have progressed this far.

My husband said that it doesn't surprise him that there is such a turn over of doctors at this hospital . I'm leaning more to this one Neurologist lack of experience and refusing to check my history before slapping a mental label on me that she has no proof for.

It really doesn't matter to her what happens to me as she'll not think twice about me . To her I'm just a few dollars in her pay check or a number.

At least now I won't have to prove to my old neuro that I have MS.

[SNOOPY]

Brain mri inconclusive ,spinal mri normal for my age ( my other 3 mri showed 3 herniated disc,spur and narrowing hummm)

Hi daylight,

Your brain MRI was inconclusive. Other than what is listed above, did the spinal MRIs show any lesions? Has any doctor mentioned the herniated discs, spur and narrowing could cause neurological type symptoms?

An EMG is not part of the diagnostic criteria for MS. An EMG is used in diagnosing other conditions.

It sounds like you had really strange experience with the new doctor...Yikes! Better luck with your old neuro!

[Scooter24]

Daylight- I know where your coming from regarding the herniated disc, had a dr say all my walking and foot drop problems were caused by it, I now know that the test they ran did show it but were inconclusive as to it being the cause of my problems, was only sent to a nuero when a GP I knew and was playing golf with one day saw how I was walking and my foot drop, he said I needed to see a nuero and did a referrel for me and walla, 3 wks later had a dx. He said he knew what was wrong when he saw me walking. Good luck with your previous nuero.

[daylight1965]

Snoopy - in the past small lesions were seen on Brain mri but inconclusive with mri done last June. My cervical show 3 herniated disc ,bone spurs ,mild narrowing. No lesions in spine. Testing clinically positive for upper neuron problem.
Emg showed not motor neuropathy on right side.(test done without NCS -Aug 2011)
NCS - showed sensory neuropathy (this test was done with previous emg June 2010)
Doctors felt LP was not needed .
All blood work done to exclude autoimmune disease . Rheumatoid arthritis found and confirmed again. ( I was initially dx'd with RA in 2007)
Optical neuritis confirmed back in 2007
trignental neuralgia confirmed in 2009
Time -space of flares confirmed again with PCP (internist and neuro observation)
I know my prior neuro was confident that it's MS. I know I'm leaving out symptom

My symtoms
spasms/spasticity
numbness heaviness feet/legs /arms/hands
blurred ,sometime double vision
joint pain ( also caused by my RA)
bladder frequency
tremors
muscle fasciculations
dizziness
ataxia
drop foot (right foot)
mild atrophy feet /right calve muscle
sever weakness in legs and shoulders
headache during TN or ON. attacks

Symptoms became noticeable in teen. Flare ups became pattern (noticeable in my twenties ) . By 2002 neuropathy damage was present. Flare ups were harder to track because of continued damage and RA flare happening as well. Now the only was I can tell if a flare is MS or not is lack of feeling suddenly getting worse in spots . With the RA mimicking some MS symptoms it makes it hard to know whats what. I've gone from using a cane to walker to manual to now power chair . This took 11 years to progress for the mobility limitations to progress to this point even with physical therapy.

I've gone to now 4 neurologist and 1st said probable MS,2 diagnosed MS,3rd said upper neuron disease, 4 was an idiot who didn't even look at my history or all the testing results. 4th "neuro" was resident fresh out of med. school.
Now that we know what happen with my neuro that initially diagnosed me I'll be going back to him to explain all this mess.
It ridiculous that all this mess happened because of a lie that was told saying that my Neuro was Ill and leaving the medical field. Staff from a pain management center I gone to were lying about my neuro ( who I found out yesterday also works as a pain management specialist ).
Stupid me was so sick the I didn't check to see if this was correct before reacting which started a snow ball effect leading to all this . Truly makes me sick to my stomach to know that both my husband and I were so gaulable (sp?).