Possible MS: Hi, I was diagnosed with... - My MSAA Community

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Possible MS

Iluvk9s
Iluvk9s

Hi, I was diagnosed with possible MS June 2017. I have been on the roller coaster ride of my life! The neuro that I was seeing told me that I do not have MS because the MRI of the brain and spine were negative for lesions. He treated my sleep apnea also. When I had any type of questions, he blew me off. He diagnosed me with osteoarthritis and gave me gabapentin, methocarbamol, and hydrocodone. Now he is saying that the meds are unwarranted so I am looking for another neurologist in the Little Rock, Arkansas area. Anyone have any suggestions?

20 Replies
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greaterexp
greaterexpCommunityAmbassador

Do you know what criteria were used to give you the initial diagnosis of MS? MS can be tricky to diagnose, but a good neurologist should be able to help you know for sure.

Have you done a good online search for neurologists in your area? I’m sorry I can’t help more.

Welcome to the community here, no matter what you’re facing.

Iluvk9s
Iluvk9s in reply to greaterexp

Hi, greaterexp. The neuro used my symptoms and a physical examination. He also used blood tests completed by my PCP that ruled out gout, lupus, lyme disease, etc. Thanks for the advice. :)

I think it’s weird that a neurologist would diagnose you with OA. Have you seen a rheumatologist to confirm this? I also throught there were better drugs for OA. I’m sorry about the roller coaster you’ve been on and I hope it stops soon with the care of a new provider.

Iluvk9s
Iluvk9s in reply to kdali

Hi, kdali! I thought it was weird too! I have not seen a rheumatologist. I changed my PCP and, hopefully, I will be able to see new specialists. ;)

kdali
kdali in reply to Iluvk9s

Oh, good! Let us know how it goes!

A very warm welcome to you lluvk9s, yes, do a search in your area for an MS specialist Neuro. Def. Get 2 or 3 different opinions & a spinal tap if u can, my M.S. Neuro. Told me too that my lesions weren't M.S. specific, then after the spinal tap, shesaid oh yes, Progressed. So, do your research & we'll leave the lite on for ya! We'll always be here for u & keep us posted! K!😻💪😍Blessings---Jazzyinco

Iluvk9s
Iluvk9s in reply to Jazzyinco

Hi, Jazzyinco. Thanks for the encouraging words and advice! I will definitely try to get at least one more opinion. ;)

Fancy1959
Fancy1959CommunityAmbassador

Lluvk9s, it's Fancy1959. That was like to walk you and you into our extended family in this awesome chat room. We promise that we will provide you a safe place to come and ask questions, voice concerns, seek information, or simply speak to others who truly understand. All this will be done by some of the most caring, kind, and compassion people I have ever had the pleasure of working. We're so glad that you found us.

Now allow me to give you a great resource that you can check with to find a new neurologist stop. Call the national MS Society at 1 800 fight MS. Put you with a caseworker and once you explain to me they will find a neurologist practice that they call their Partners In Hope. I went through them when I needed a new neurologist also and was amazing. These practices of neurologist never give up on you. They know the latest information on the newest the DMTs push to get you onto the best medicines for you. They have offices Across the Nation so they will find you some relatively close to meet your needs especially with you living close to such a big city as Little Rock.

Please keep in touch and let me know how your search for your new neurologist goes. Until we speak again please take care and remember Together We are stronger!

Iluvk9s
Iluvk9s in reply to Fancy1959

Hi, Fancy1959! I will definitely call and try to find a new neuro closer to me. Thanks so much for the information and encouragement. I will keep you updated!

Hopefully you don’t have this awful disease.I had various tests,MRI,bloods,etc.I think the Spinal tap confirmed what they knew after ruling out various other diseases.Best of luck with your diagnosis & treatment.This is a wonderful site for information &!personal stories and great advice.We are all in this together,some of the lighthearted stories & encouragement can give you a lift when you might feel fed up or just worn out.Have a nice day & keep positive.😀🍀Eugene.

Iluvk9s
Iluvk9s in reply to Curran1970

Thanks, Eugene

lluvk9s Before my MS diagnosis a Neuro put me on 24 hr Rx for gabapentin. I did not know why exactly. At that time it made me into a zombie, dopey drunk all the time, legs weak as water. When my husband realized the changes in me, he told me to stop it. I did and my symptoms went away. Later on, another Neuro (who also diagnosed my MS) put me on it for pain issue with burning feet. I do have neuropathy in my feet and legs. It apparently is good for pain and neuropathy. I take it mostly at night, and 2- 100mg pills help me get to sleep. I have had insomnia for years, so this helping sleep is good. I also take temazepam and sometimes add OTC doxalamine or Unisom to help.

Iluvk9s
Iluvk9s in reply to 4fishylady

Hi, thanks for your input. It is nice to be able to talk to people who understand. I have been on gabapentin for about 3-5 years now.

You have received some great advice already Iluvk9s When I was first going through tests because of sudden blurred vision, my brain MRI was suggestive of MS and my spinal tap confirmed it was MS. Have you had a spinal tap to help distinguish what you have?

Good luck with finding a new neuro. Please keep us posted.

Jessie

Iluvk9s
Iluvk9s in reply to bxrmom

Hi, Jessie. Thanks for the reply! I have not had a spinal tap yet. I think the doctor has finally ruled out everything. I have been having these MS symptoms for a year now.

bxrmom
bxrmom in reply to Iluvk9s

A spinal tap is what got me my diagnosis as everything else was clear of MS and any other diseases. You may want to talk to your doctor about getting a spinal tap.

Keep us updated when you can,

Jessie

Iluvk9s,

This just shows how MS manifests itself in so many ways. It’s a hard one to nail down, and you’re not all that thrilled when they do. I’ve used most of the brain numbing drugs to help with the symptoms in my legs too (much like you describe). Too many crazy dreams and lack of concentration during the day for me. I hope you can find a good Neurologist to help you through this. Remember, this is a wonderful place to ask questions.

All these folks have different ways of dealing with the disease and we all have different symptoms. You’re in good company.

Good luck!

Craig.

Iluvk9s
Iluvk9s in reply to CraigS

I heard that! But it would be nice to know exactly what is causing the symptoms. Thanks for your input! I will keep everyone updated. Sorry it took so long to reply. I have been in the hospital.

Hidden
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My doctor informed me I had MS but to confirm I was given a MRI which confirm it. I

Sorry, but I can't help on that question. I do agree you have to find another Neuro. It is so unbelievable that two Neuros can see the same info and come to totally differing conclusions. I had that happen also. The first said that it is possibly MS and then let it ride for 18 months. The second jumped right in and did another MRI and spinal tap, and confirmed MS. The first had the most awful manner of any Dr. I have ever had to listen to. So when I found my current Neuro, and he was the exact opposite, my search was over. He is not an MS specialist, but is very highly esteemed in our area of NC. His specialty is more in the area of nerve and pain. He is young, good looking and from Sweden. He's a keeper!

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