Looking Advice

As all of you know 3 Lesions were found one on my frontal lobe the other two are in my inner ear canals. I called Neuro yesterday for my Dr To call me back about a lumbar puncture because it is obviously something I was not born with. Well I get a call from a technician staff trying to convince me that frontal lobe lesions is not part of MS and a lumbar puncture would highly unlikely. I have read about MS lesions located everywhere in the brain...so this "technician" is wrong.

So I'm getting my PCM involved to see an MS specialist.

Do you think I'm doing the right thing?

Advice much appreciated from you guys!

Stephanie

28 Replies

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  • Yes, yes, yes you are doing the right thing!!! I told my neurologist yesterday what your said about the Effexor and he shook his head. He is an extremely intelligent man and he said that is just wrong. Period.

  • Karen-x,

    I'm glad you talked with your Dr about Effexor. That eases my mind! Thank you.

    You are such an inspiration for me, I can't help but thank you.

  • Wow, please don't be inspired by me. I appreciate it though. Seriously my faith gets me through!!

  • Stepinup l had an appointment with my "head" doc yesterday and l asked him about the effexor and MS connection that your Dr seems to be making. And like Karen-x said. He said no way! He also told me to tell you to change Drs now!

    No one knows what causes lesions hun. Although yours might be caused by something else ldk. Personally l really think you need a second opinion.

    Call MSAA today (800) 532-7667 ext 154

    They can give you some names of Good MS Drs.

    Jes🌠

  • I called ms society yesterday and they gave me some names of specialist in my area.

    Yea, I agree with everyone about finding a new Neuro!

    Thank you Jes!

  • Glad to hear that you are seeking referral to a specialist, Stepinup

  • Hope you get the referral soon. Now is the time for you to start YOUR ms file. I have copies of all labs, mri/CT discs and notes, progress notes from dr appts. etc. that I take with when see specialist (8 hrs away) in case local neuro forgets to forward something. When you ask medical records for this information mark "continuation of care" and there is no charge.

  • Thank you so much for the information. I will have to do this!

  • Love it, Stepinup! I was diagnoses 30 years ago and have all of my records, MRI films and MRI CD's. We are our own best advocate!

  • Yes!

  • Hi Stephanie! Yes...you are doing the right thing!

    Doctors and nurses that specialize in MS are the most knowledgeable. With other health care people it's hit or miss whether they know anything about MS or not. Even non-MS neurologists can be quite ignorant about it and have outdated information. I've done more than my share of educating health professionals about MS in my 17 years since diagnosis. It gets to be annoying...especially when they think they know things but don't. Their ignorance can be dangerous for us.

  • Very good idea to see the MS specialist Stepinup

    Not sure if u should push for the LP? It was negative despite my MS diagnosis and I believe that's true for many others.

    Wondering if u have hearing related issues, vertigo or balance with the ear lesions?

    Hope all goes well 💐

  • My LP was negative too but I have a clear case of MS. Of course my first MRI was inconclusive as well. I had a great neuro though who watched my symptoms close and diagnosed me ten months later without definitive tests.

  • I do have hearing problems from time to time. Sometimes it's like hearing with a cotton ball stuck in my ear...nothing helps.

  • Stepinup i get the same in my right ear...annoying.

    I've seen 3 ENTs and all say it's MS not my hearing

    Interestingly, my husbands hearing aid helps when this happens

  • I have had somewhat of a problem in my left ear for many years. Finally at ENT diagnosed it as conductive hearing loss and a apachelet (?sp) ear. I had no idea I had MS and I still don't know if it is, I see my hearing loss in that year. It isn't too bad but when it first started I was probably in my 30s or 40s and now I'm almost 7. I hear OK but there is a difference from one year to the other. A lot of things and MS that are hard to pin on it.

  • Wouldn't a LP be necessary in helping the diagnosis processing? (or help to see if I have another condition?)

    I thought it was routine in MS patients

  • Stepinup only helps diagnose if +

    If neg it doesnt rule out ms

    no longer standard of work up depending on neuro

  • I see, thank you☺

  • My LP was negative, too, but I clearly have MS. I've read that about 90%-95% of MS patients have a positive CSF. I wonder if that number is dropping, since MRIs with clinical evaluation seem to be pretty good at diagnosing.

  • LPs are not all that routine. Kind of depends on the situation and the neurologist. I was never diagnosed with an LP. My lesions were there when I had a brain scan and of course it helps I have a daughter diagnosed three years before I was. She is the only other relative I know that has MS. It also helps to have a good radiologist look at the brain scan. Believe me they're not all the same

  • You said you had lesions on your frontal lobe but do you know whar those lesions look like? MS lesions usually have a specific look to them kind of like around center with little fingers coming out from them. Yeah lots of lesions for instance Lyme disease lesions that mimic MS. There is a new category I think it's called C I S for people that have symptoms and no other diagnosis they could be MS. It's a new clinical diagnosis and sometimes MS drugs are prescribed for those people who are in this category. I would show you her MRI results to a specialist who can look at them and a good radiologist as well.

  • Stepinup Most definitely get a second opinion! It's your right to do so! As far as that technician goes? They need to be fired, because the last l heard, l don't think they can read the MRIs.

    The 1st Neuro l saw told me that everyone had "white" lesions in the front lobe, caused by headaches and/or migraines. And would l like Botox for that.😠 He completely missed the MS lesions. Needless to say, l kind of feel bad for the nurse that called me back. The last l heard she quit.😅

    YOU ARE YOUR OWN BEST ADVOCATE! You know something is wrong so keep pushing til you find an answer Stephanie! We are here with you!

    Jes🌠

  • YES YES YES get a 2nd opinion, personally I A:WARS say hold on the lumbar Puncture, but get a 2nd opinion and ditch that near. If he can not even call u back u will not be happy with him. I personally have gone through 3 euros to date on the 4th.

    Royce

  • Yes. Any time you don't feel your professional care provider is listening to you or you're questioning what they're telling you, get a second opinion. Or a new doctor entirely. Sadly, you're not dealing with a common cold. You're in this for life and the more you know and the sooner problems are addressed, the better.

    Good luck with getting a better evaluation.

  • Stepinup makes me furious!!! 6 yrs ago I was told my lesions weren't MS but 5 yrs later a cardiologist saw the cd, sent me to another ms specialist and with clinical kobservation and history made definite MS diagnosis. New MRI revealed lesions ahad increased to 10 in brain (2 in neck). So find you a highly recommended MS specialist neurologist!!! Who will listen to your symptoms and give clinical appraisal. Took me 4 neurologists to find one who knows what he is doing, so keep searching til you are satisfied with answers!

  • After balance rehab they will evaluate me again and if symptoms persist then they will refer me to another Neuro specifically for MS.

    I'm okay with that.

  • Stepinup, it's Fancy1959. I agree with Jess that you are always your best advocate for your health. When you're not in complete agreement with the doctor seek a second opinion or ask for more testing so the results are very definitive. Our doctors are wonderful, gifted, and educated individuals, but they are just human and can make mistakes just like everyone else. I believe that ability to treat their patients with respect and to understand they are not "God-like" is what sets the truly gifted and absolutely amazing doctors apart from the rest.

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