Finally getting into seeing my neurologist - My MSAA Community

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Finally getting into seeing my neurologist


My PCP kept refusing to give me a referral to the neurologist I seen in 2015. This neuro felt there was a good chance I had MS then but he needed a second set of MRI's to show changes in the lesions.

Why my PCP refused to give me a referral I do not know but luckily my old PCP was understanding and got me a referral without question.

So now I am armed with a second flare, second MRI with 1 additional lesion "7 previously" , elevated CSF protein.

I feel like my flare is coming to an end luckily. It lasted for months. The vertigo and dizziness were so bad it gave me panic attacks. I literally lost my hearing in my left ear for a week! Like someone flipped a switch and shut it off one day. It's back now but that freaked me out so bad. I couldn't drive for a while. Sometimes it felt like I had water on my leg or foot, burning feet and legs, tingles, stinging pain like I was being stung by ants. Once had to take my pants off in my friends barn, I was so sure a bee or ants were stinging me. Crazyness!

So the 19th I hope to get a clearer picture on what the next step will be. I'm scared but also I just want to move forward and stop or slow progression.

17 Replies

good 2 hear ur going 2 see the neuro.

u may want 2 consider changing your pcp. your pcp is supposed to be your advocate to better health

I just switched my pcp b/c every time I asked for something or needed something she refused within the last yr. I had 2 suffer for awhile because I had outstanding orders so I couldn't switch until they were all done, once they were done the next day I called the new pcp and saw him later that day

I am switching to a new PCP. First appointment is 9n the 24th :)

yes way to go

I'm so sorry you had those problems I hope & pray you will get the answers you need.

Like others have said, your PCP is supposed to be your first advocate not your adversary. Glad you're getting a new one. How you get the answers you need soon.


I’m so glad you are finally on your way to a proper diagnosis and treatment. Hang in there and let us know what you find out.

So glad that you are almost through your recent flare. I've had just about everything that you described to some degree. Unfortunately, the good news will be an accurate diagnosis and the start of a proper Rx regimen. Then, hopefully, you'll never have another flare up of whatever it is.

I am happy that you are changing PCP. If your PCP doesn't assist in searching for answers to your concerns, then what good is she/he? Keep searching until you find the answers that you deserve, Tigerlilly81 :-D

Tigerlilly81, Your PCP is supposed to be the Quarterback for your health care. If I were you, I would be looking for a new Quarterback!

Tigerlilly, one of the many reasons I don't do well w/Doc's (the white coat dudes or dudettes)😀lol! I & many others in here & 1,000's of other people have done "The Candida Cure", & "Healing Multiple Sclerosis", By Ann Boroch's E'Book, It is Awesome!👍👍😀

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Tigerlilly81 I'm no doctor, but many of your descriptions match manifestations of my MS. I too have taken my clothes off, hopped into the shower thinking insects were crawling on me; my hearing too has stopped as if someone flipped a switch; I have felt cold water dripping on my legs when it was impossible for that to occur; and I too have had doctors dismiss my symptoms. You are not alone. Keep searching until you find an answer to your questions and whatever you do, don't let sceptics make you feel diminished. With a diagnosis, the chances are very good that this parade of symptoms can be ended, much like when a parade ends the band members, horses and floats disperse leaving behind evidence on the route they have taken.

I hope you get the additional MRIs you need and can get a diagnosis so you can start treatment!


Your pcp has acted unconscionable. Glad you found a way to get referral and are changing pcp

What a travesty. Unfortunately a little too common all specialties. Here's to answers and hope, blessings.

While I haven't had the periodic or one time deafness, everything else you describe I have had. I still getting the dripping water on my L thigh, tingling in my arms and fingers which is irritating. I just hate the invisible bugs and it serves me ill because when I have a tick, I ignore it.

It pleases me to no end you are getting a new PCP. It can only get better and being on here, HealthUnlocked, will enable you to be more observant and see others ways to address issues.

Wish there had been something like this early in my MS career. And the younger ones among us may say the same thing in their futures. I hope so.

Try your bsst not too stress. I have known I had MS for 33 years and thankfully it takes time but my wife of 35 plus years always somehow laugh about whatever MS does to me. I cannot tell you how to make light of things, and I am glad you are going to a neurologist. Remember you are in control of your body and for myself I research everything before agreeing to put anything in my body. Good luck and keep a positive attitude

Don't be afraid, if you can. I was so relieved to find out what was wrong with me! You may be the same. Just to KNOW! I crashed a burned (i.e. bawled in bed for a day) a few days later but at least I knew what I was up against. So glad you may be getting answers soon!

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