Running out of patience and Pennsylvania neuro's

[CathyDe]

Hello,
I was diagnosed with MS in early 2008 after all the physical symptoms, and a MRI of the brain that showed lesions. Now, a year later, I am having another attack, and have gone thru 6 neuro's, all who have a diff diagnosis for me. I just had another MRI of the brain, and again, my new neuro isn't sure. The first report said something like, multiple areas of white matter most likely MS, Lyme's, or migraines. I've been tested for everything and re-tested triple times. My LP that year showed elevated protein, but no O bands. (sigh). My MRI I just had done, report says, Multiple scattered subcortical foci of T2/FLAIR signal without evidence of abnormal enhancement. Likely to include migraines ( i dont and never had headaches), small vessel disease or demyleating processes.
So, once again, I am down for the count, with numbness, tingling, brain fog, cant stand for longer than 5 mins, muscle cramps and burning, left eye pain, etc.
Any advice or anyone know what my MRI's mean? I did just have another LP, and am almost praying for O bands, as this is becoming one long year nightmare
Thanks
Cathy

[CathyDe]

Thanks, I guess I am not the only one feeling like this, and going thru this. God help us all.
Cathy

[ShockedToday]

I felt when I was reading your story, that you were almost me.  It is sad what so many of us have to go through to get a dx.  I was given the dx of MS and had it taken away only to get it back by an MS specialist who said I did have MS even though my LP was normal.  I think the dr at the hospital suggested sounds like a good idea.  I will keep you in my prayers.

[Noelwolf]

I feel bad for you, I am going throught the samething with My Pittsburgh doctors.  One doctors feel like I have MS but can not dx me. Another told me I had smokers brain. It is never ending battle. Now  I have to got to MS specialist and the first appointment is not until the end of July. It sad that these doctors look at us, like we are nuts. I have serval lesions on my brain MRI, normal cspine mri and my lp was normal.  Don't give up and hang in there!

[CathyDe]

Thanks, maybe I will call Jefferson next round.
THanks again, and hello neighbor!
Cathy

[truelove47]

hi

I hope you can find some answers.

When I was dx'ed I lived in Philadelphia, Even though I have moved,(100 miles away)
I continue to go back there because the city has great hospitals.

I go to Jefferson for my ms (started there and stayed)
I guess I can't say the docs name , but he is the director of the ms clinic at Jefferson.

I feel he is the most knowledgable neurologist and human doctor I have ever met.
Even if you could not get an appointment with him, if something cropped up, that another
doc may not know, he would get involved. I wish you well          Linda

[CathyDe]

I am devastated and am so alone.
Thanks

[sllowe]

Bumping this for you so we can go from here -

[CathyDe]

Hello and thank you for the welcome and the wonderful response. I will try to answer all your questions. My age is 49, and I didnt feel that old until this all started. First, yes, I had my MS diagnosis on 3/3/08 and had it taken away around 6/08. Its been a ride that I really want to get off. My sx started with weak legs, problems with walking distances and fatigue. Then one day I had terrible left sided head pain and L side weakness and was sent for a stat MRI. The report conclusion reads, " Scattered areas of abnomral signal demostrated in the deep white matter bilateral. Although nonspecific, the findings are most consistent with MS in a female patient of this age. Clinical correlation is recommended." And so, it began! I was put in the hospital immediately on 7 days of high dose steroids. I went home and began Betaseron injections. Now the answer to all of the diff neuros. The first one, that I started with, wasnt giving me any info, just giving me scripts and sent me home to learn and wonder and all that, so, I wanted one that would be a little more helpful, and my nightmare began. I work in a hospital and we didnt have a neuro on staff but were expeccting one soon, so, until she came, I sought out a neuro someone recommended. She did labs, all the usual that one would do to rule out everything, all negative, and she also ordered the LP. THe LP showed slightly increased protein, but no O bands, so, after two visits with her, she told me she didnt "think" it was MS, and that I should go to a large facitliy to a MS specialist. So, I did, I went to University of Penn in Philadelphia. Keep in mind, this visit was just a consult. In the meantime, I couldnt work, barely could walk, had numb feet, tingles everywhere, confusion, memory loss, fatique, everything. So, off I went to Phila with my reports. This neuro said, my lesions were not consistent with MS lesions, and LP negative, and she also didnt think it was MS, but she said, "but I could be wrong" . She advised I find a local neuro as again, she reminded me I was only there for a consult. By then, the new neuro where I worked had arrived. This is probably around late April early May 2008, and I'm still doing Betaseron, Baclofen, Amatadine, and the only one who was supportive and beleived I had MS was my GP. So, I went to the new neuro, she reviewed my records, said basically the same as the Phila neuro, and then proceeded to ask me if I was seeing a pychiatrist. She told me to come back to see her in 3 weeks. I went back, still having the same problems, and she walked in the room and said "All better now?" I could have cried. She ordered an EMG, which took months to find an appt, and that was normal. Of course, at this point, I was feeling a little better and back to work. I just didnt know where to turn. This neuro however, did tell me to stop the Betaseron, and I did, and was happy as the side effects were awful. I dealt with the sx for a month and went for another consult, I beleive this would be neuro #5 I think. He said, the same, although, he said, "You have something wrong that is causing these neuro sx, but I dont know what it is, and if you find out, let me know". I had to get a new GP at this point because my usual one moved out of state. I liked the new GP, at first. She sent me to a rheumotologist, and he said I have chronic fatigue syndrome. UGh,,,so, my GP put me on Plaquenil, Amitryptoline and either they worked, or I was over my attack. I dont know. I saw her for about 3 months, and I looked in my chart she has, and it had written in it, "suspect somotization disorder" THen, problems started with my employer since I was off so much, and myself and my GP both work for the same, and my employer was checking in with my GP on my health info, and yea, can you beleive it? She was actually giving them info! Needless to say, I have filed a HIPPA violation against them. So, I think I am up to my present neuro, who so far, I have not yet made a decision about yet. He ordered MRI's , labs, and and LP. My recent MRI's include cervical, lumbar and thoracic, all normal. (except for herniated discs), and my LP has not come back yet. My recent brain MRI reads, "Multiple scattered subcortical foco of T2/Flair signal without restrictive diffusion or abnormal enhancement. " This current flare I am having now, started 2/13/08 and hasnt let up since. I think since this began I only had maybe 2 months that I felt better, but, the left leg limp and pain never went away. Odd fact here, I traveled alot for business, and have taken about 4 trips since my first attack, and I have minor, or short attacks post air travel every single time! This time I flew back from Texas on 2/2, and I started feeling bad around 2/9. Wierd huh? I am out of work again, my new GP, whom I like alot, has told me not to worry about going back to work anytime soon. ??? Who knows, all I know is I feel like no one is listening, and I'm on my own and cant get help.
Cathy

[Quixotic1]

Hi, and another welcome to the forum.  Wow, I hate to hear that someone has lost the diagnosis of MS.  It almost always means that they have MS and have run across a neurologist who has inappropriate and stringent rules for diagnosing.  One of the most common mistakes these neurologists make is they believe that a negative LP rules out MS.  Did this happen to you?

Let me say this plain and clear.  YOU DON'T HAVE TO HAVE A POSITIVE LP TO HAVE MS!!!!  We have confirmed this with some of the best neuro's in the US and NOTHING in the scientific literature states that a positive LP is necessary.  If this is what is holding up your doctor(s) then you need to find new ones.

What kind of other workup has been done?  Have you seen a neuro-ophthalmologist for the eye pain?  Have you had a Visual Evoked Response to see if you have suffered some optic neuritis?  With all of the numbness, have they schedule SomatoSensory Evoked Responses?  or done EMGs and NCS?

Now, the other two possibilities for diagnosis are migraines and microvascular disease.  First Migraine disease can cause discreet attacks of all sorts of neuro symptoms.  A headache is not necessary, but typically the person DOES have a history of migraine headaches.  ALso, migraine disease typically begins in adolescence or very young adulthood.  How old are you?

Microvascular disease refers most commonly to uncontrolled hypertension or diabetes.  And these lesions are not typically symptomatic.  So, depending on your age that may be a less likely diagnosis.

Would you write out the findings and impression from your MRI?  That might help know what they are saying.

Also why the large number of neuros?  Not that we don't understand why someone would see 6 or 8 neuros, but what is your story.

Also, would you tell us about your symptoms and how they appear?  Do they come in attacks or are they always present?  Do they ever improve?  Tell us all.

Finally - to recap - a negative LP is NOT a deal breaker for a diagnosis of MS.  Our own expert on MS, Dr. Kantor is a doc at Shands.  He is emphatic that you don't need O-Bands to qualify for a diagnosis of MS.

I am a physician with MS, but I am not here officially nor was I a neurologist.  I do, however, have a handle on a lot of MS info.

I hope this has helped.

Quix

[Lulu54]

Hi Cathy,
I'm confused, but that happens a lot to me .... you say you were dx'd with MS in 2008.  What happened that the dx was taken away?  You should have immediately started a DMD after the MS was seen in early 2008.  are all these neuros specialists in MS?


Not that I'm saying you have migraines, but did you know that migraines don't necessary mean the same as headache?  You can have migraines in all sorts of body parts besides your head too.  They occur where you have nerve endings, if I've got it right.  One of the Medhelp experts - Dr. Park  - has done quite a bit of discussion about migraines.  

Sorry that I strayed from you question. I hopeyou get some answers soon.  

my best,
Lulu