posted
I know others have been through the same thing so I guess I'm just venting.
I've been going through the Lyme vs MS diagnosis for the past 4 years. I had accepted that it was Lyme after a red rash/ring and testing positive on Lyme test(no positive tests for MS, just a couple spots on MRI and a report that said they could be from MS or Lyme).
Had double vision this summer and had another MRI and of course the neuro said "definitely MS" and even questioned if I ever had Lyme.
I then went to a neuro opthomologist (my double vision was gone by then) and he spent alot of time testing me and said he couldn't find anything wrong with my eyes. He didn't think it was Lyme and said maybe MS but my symptoms were mild so he recommended another opinion from MS specialist. As he was examining my eyes my head started to shake slightly (this is the only time it happens and I know it's just nervousness at feeling like they are going to stick something in your eye, my husband says he does the same thing).
He seemed like an open minded doctor but when I picked up my report today I was totally disappointed. He mentioned my facial numbness 4 years ago and said I had an MRI which revealed findings consistent with MS (he failed to mention the report also said the spots could be due to Lyme Disease!). He also said I have a fine head tremor (my head never shakes and I told him that but he included it anyway).
He then stated that even though my neuro exam was normal my MRI and history makes the diagnosis of MS almost certain.
He also said "It seems clear that there is considerable denial in accepting her diagnosis. He of course said I should give consideration to starting immunosuppresive therapy for "her MS". How he came across in person and his report do not match and I now feel like he was just being condescending to me.
I went to the Lyme doc the next day and he said that his impression is that I have chronic Lyme Disease and that there is no compelling evidence clinically for MS.
It is just soooo confusing! I have an appt. with an MS specialist in 2 weeks but I don't want to go even though my husband wants me to. I know what they are going to say. Once look at the neuro reports and they're going to think I'm crazy for even getting another opinion.
My Lyme doc did give me the name of a neuro who also treats Lyme patients (if I felt better getting another opinion). At least he would be more open regarding the Lyme and wouldn't just dismiss it like all the other neuro's do. My Lyme doc said that most do not know alot about Lyme.
I'm sick of this. I feel so bad for other people I see on this board that go through the same thing. I guess I just wanted to vent and also see if anyone feels that I should go to the MS specialist. I know my husband worries and just wants the best for me but I'm sick of neuro's. He should know too. He had Bell's Palsy last year and still has trouble with his right eye. He went to a neuro and all he can say is that my husband is a "work in progress" and to come back in 4 months. My husband made the appt. and then cancelled since he was so unimpressed with this doctor. At least I'm not alone in my opinion.
Thanks! Linny
Posts: 24 | From MA | Registered: Jan 2002
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
linny,
Sorry you had/having such a miserable time.
MS again is a disease named for a symptom, you have lesions so you have MS. Multiple Lesions. I call it Lyme induced MS. After 15 years of a MS dx and finally finding out mine caused by lyme....I NEVER go to ANY neuros wether lyme knowledgable or not.
This saves alot of stress, confusion, anxiety, frustration. What can a neuro do that your LLMD can't?...NOTHING.
I don't need to hear a duck to know what sound it makes anymore.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I vote no on a visit to the MS specialist. That is the way you are leaning anyway, right?
Without all that quacking in your ears, you will be able to hear better.
Think maybe the MS guy is like the man who only has a hammer and thinks everything is a nail.
If the next neuro tells you it is MS, what will you do about it? You know the dangers of immunosuppressive treatment if you actually have Lyme?
Posts: 8430 | From Not available | Registered: Oct 2000
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
hello,
i was on another site today and they had a video interview with Amy Tan and the lyme literati(sp)...She had the white lesions on her brain too...and so did another person in the video.
You coul get another opinion....but i wouldnt go on any immune suppressents.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I know this will be hard to believe but someone I know was diagnosed with MS and went to the Cleveland Clinic for a second opinion. The neuro there didn't think so and sent him to an ID doctor who said lyme. They put a PICC line in and gave him abx. He has never had any more symptoms (he had numbness on one side of his body). However, they still won't take away his MS diagnosis and want him on the immunos. still. How bout that one. Hard to believe.
Also, they only gave him 30 days of treatment so he still had a duck treatment. He had -elisa and + wb.
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
I guess we should think that half right is better than all wrong in the above case. Do you suppose that they will eventually get it all right?
Boy, these days patients have got to think for themselves.
Posts: 8430 | From Not available | Registered: Oct 2000
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lymeloco
Unregistered
posted
I went to an m.s. specialist...who is supposed to be tops in this field.
I did have leisons, and he asked if I had a lyme test and a thyroid test done. At that point I did have both, and they were neg..
He said he did not think it was lyme, but was very rude and arrogant towards me.
He is Montel Williams doctor! My friend referred me to him years ago. She asked what I thought, and I told her I thought he was an arrogant ---hole!
I did test positive with cdc standards. Mri, western blot and spect. scan.
He wanted me to be seem six months later for another follow-up mri. I'm so glad I didn't bother!
He was so rude! I'm getting angry thinking of it now! Is it possible that they're realizing that many of these m.s. diagnosis are wrong, and don't want to pay the price?
My own p.c.p. wanted to put me on steroids even after a positive w.b..
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Linny.
Skip the neuro.
I mean, it's not like he's gonna FIX it even if he DOES think you have MS, right? He's just gonna put band-aids on it.
Your LLMD is gonna FIX it. Kill the thing that's causing it.
Many here have been where you are!
I too suffered under the "Do I have MS or Lyme?" fear for months. When I first met with my LLMD, I told him, "If you think I don't have Lyme, throw me out."
(They were shaking their heads and smiling since they were so dead certain I had Lyme.)
My neuro was and is as stubborn as yours. I have 11 brain lesions, absent bilateral cortical responses in my evoked potentials tests, and some other weird neuro stuff but still not really typical MS stuff. And my brain was exploding from pain -- rarely the presenting complaint of an MS sufferer.
Still, despite being "atypical" in my presentation, my neuro would have labelled me MS and kept me coming back and possibly on MS meds. He never would have "fixed" anything.
Your LLMD WILL.
A CDC positive western blot gave me the confidence necessary to know I was doing the right thing to scratch him off my calendar for good.
Ditch the neuro.
Best wishes.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Whenever I go to neuro's and have a bad visit (which has pretty much been always) it's nice to hear from others who don't think I'm crazy for questioning these doctors.
What really stinks is that even if you have Lyme, the neuro's are not going to retract their diagnosis and you are stuck with MS on your records whether you have it or not.
They can question the Lyme diagnosis but can you imagine if the Lyme doctor questions their MS diagnosis? I wish I had the Lyme report that day which states the this Lyme doctor does not believe I have MS (I saw the Lyme doc the day after). I could just see the neuro snubbing his nose and making some cynical comment.
These neuro's can't even guarantee these drugs help you at all yet they make you feel like you are crazy not to take them. I have a cousin who supposedly has had MS for the past 20 years. She does not take any drugs and only really suffers from some fatigue. I wonder about her diagnosis too.
I now wonder why I ever had all of the other MS tests (all were negative) since they are going to make the diagnosis fit based on a couple of spots on my MRI.
When I go for my next physical with my primary doctor I am going to make sure she receives a corrected report from me. It's only fair that she has the right information. I'm also going to let me opthomologist know during my next exam how I feel since he was the one who refered me to the neuro optho.
It's just really sad how little most doctors know about this disease and how it can affect your health.
Posts: 24 | From MA | Registered: Jan 2002
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
There is a Nuero LLMD here in NJ.
PM me if you are interested.
He does studies and goes to seminars regularly. He is constantly learning and is kinda humble.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Hi Linny, My LD Ophthamalogist has patients that see LD Neuro in NJ--they really like him!
I'm presently gathering my records to see my original LLMD next week...In short, my full-body MRI shows DEMYELINATION (MS) CAUSED BY CHRONIC LYME DISEASE & MY BLOOD CULTURE BY LIDA MATTMAN SHOWS CYST-FORM LYME & hords of yeast...I'm swimming in it!
I also have positive tests for Babesiosis & Ehrlichiosis. My 1st LLMD told me that a person MUST clear the Co-Infections 1st b-4 tackling the Lyme. Have you been tested for the co-infections yet?
I was dx with MS years ago. I wish I knew then what I know now & I wish I would've known about this board!!
The very best thing I could add...is...don't bother with the neuros. Some pretty big egos got us where we are today! Learn from our experiences...
I hope Doc puts me on the German protocol. I'd be well right now had I stayed on the "cyst-busters"! Flagyl brought me to my knees--if they didn't hurt so much!
Please keep us posted, Linny! Good Luck & God Bless~~Reno
-------------------- ~Life's too short, eat dessert first Posts: 134 | From PA | Registered: May 2005
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