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Tired of my neurologist and this disease???
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Tired of my neurologist and this disease???

Hi all,

Today, after 11 years being with the same neurologist and his waxing and weaning ideas, not stating what I have to saying it is "benign MS", I am tired of him not understanding that I AM GETTING WORSE and him not even wanting to at least try IV steroids....

I have been in limbo all of these years and WHY does he still continue to see me if there is nothing wrong?

My newest symptoms after a "bout of the flu" is severe facial flushing into neck and chest where my heart rate increases like crazy for a minute or 2, and I have no perspiration at all.  It comes and goes all the time since I had the flu.

My other newest symptom is, I believe, Raynaud's in my feet, where they will turn BLUE on and off throughout the day.  Plus I have had increased right-sided numbness from face to toes.

I called my neurologist yesterday and he said he only uses IV Solu-Medrol for severe cases of MS, which I do not have.  I started crying on the phone with the medical assistant and have now decided to change to another physician in that practice.  I have had it and I am tired of getting worse and worse.

Sometimes, I really feel like just giving up.  I could not work the last 2 days because I had such blurred vision and could not look at my computer screen, as I am a medical transcriptionist.  My quality of life has taken such a downward turn, but there is nothing wrong with me.

Do these doctors think that we want to have this disease????  I should have left him a couple years ago and did not.  I am so sorry to vent to you all, but I am in a bad state at this time and no one will listen, except for my pain management unit physicians (they are very comforting) and at least help my pain.

Thanks for listening,

Terri
10 Comments Post a Comment
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163240_tn?1337907961
I feel your pain and anger. I am leaving my neuro who doesnt give to ***** about finding out what is wrong since i dont fit into a neat little box for him. I wont even see anyone in his practice after the last two there. I hope you find someone great who will treat you well
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Terri,

Sorry for long state of limbo with no assistance from your inactive neuro.
I'm glad to hear you are changing neuros! I hope the next one has a different style than the first!

No problem coming here to vent, that's what we are here for!

Best wishes on your new neuro!

Ren
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Hi Teri,
seems to be the thing today, bad Neuros. I too am searching for a new one after issues.
I m sorry for what you are going through. From my own experience it is important to have a neuro you can depend on. Not just when things r in semi Rosie mode, but more importantly when we have a crisis.
While I can't offer any advice on the horrible symptoms you r having, I can tell you that the National MS Society was very helpful in giving me a list of Neuro s that treat MS in my area.
I will pray for you to feel better soon, and hope your search for a new doc is successful.
Regards, barb
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Hi and thanks for your comment.

I, too, am sorry to hear you are in the same situation.  I wish these doctors would stop treating us like a "number."  I hope you find a good neuro as well.  
It is unfortunate that we have to be our own best advisors.  

I was crying and in such a mess yesterday when I posted.  I guess sometimes we have do get it all out and take a breath.

Keep in touch,

terri
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Thanks rendean,

I am glad you were here to give me words of encouragement.

I should have changed neurologists a long time ago.  After venting yesterday, I just took a deep breath and go on, but sometimes it is hard when you are in the middle of a relapse of symptoms.

Well glad to have heard from you!

Terri
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Hi Barb,

Thanks for your response.  I, too, am so sorry you are going through the same thing looking for a new neurologist.

Before I posted yesterday, I had just got off the phone with the medical assistant when she said, "the doctor said that he only uses IV steroid treatments for MSers with severe relapses."  That right there did it for me, when I started crying and said, I want to switch to another neurologist.

Thanks for your prayers and I will pray for you as well.  We all need as many prayers as we can get.  

I came to this site 11 years ago and it was such a help to me at that time when I did not know what was going on at all.  It is nice to know that we can come back when we need to and there is ALWAYS somebody that is nice and comforting.

If you ever need anything or if anyone else needs to vent, contact me.  I love helping others, too.

Prayers,

Terri
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1831849_tn?1383231992
Hi Terri

My only thought is that you might look outside your current practice. It would eliminate the possibility that the docs compare notes and having Neuro #1's opinion color Neuro #2's.

Kyle
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I see Kyle beat me to the punch line - you really need to go to a doctor in a different practice and sometimes even in a different town.  They compare notes and you will most probably not get a fresh look at your health if you stay within the same group.   good luck, Laura
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Hi and thanks for your comment,

I just went to see a neurologist in the same practice, and I am beginning to believe that you are right.  

He only wanted to talk to me about my migraines and not my new autonomic problems or talk about MS....

Thanks so much,

Terri
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Lulu,

It has been a long time and thanks for your comment.  I am beginning to believe switching to another neurologist outside of the practice is a good idea.  

The other neurologist I saw today in the practice only wanted to talk about my migraines with aura, and not MS or my new autonomic issues of extreme hot flushes, cold sensations, plus Raynaud's in my feet (turning blue).

Thanks so much, again....

Terri
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