Some Advice Needed Please!

Hello, everyone. Getting nervous because tomorrow is my first appointment with a new doctor (PCP), and I haven't seen one since 2015. Although I haven't been diagnosed yet, I have suspected MS for quite a long time but my previous doctor(s) wouldn't refer me to a neuro or order any of the proper tests (MRI, etc), just diagnosed me with chronic fatigue and fibromyalgia. I know that was the wrong diagnosis, because I have been experiencing new and mysterious symptoms over the past year (twitching and spasms, tingling, burning, numbness and vertigo) that don't seem to be related to how I have felt in the past, or from what I've researched so far, not even remotely related to either one of them.

This will be a new patient visit, so how many of you have been through this experience before you were diagnosed, and what did you say, do, and ask at your first appointment? I'm feeling confused as to what I should say (or complain about) as far as symptoms go, without sounding like a neurotic hypochondriac! But I need answers, because I hate being in limbo and fearing the worst. I know I will have to accept it whether it's MS or not, but not ready for the reality to set in, even though I will probably feel a sense of relief to finally know for sure! Thank you and sorry this is so long, I'm just feeling anxious and a nervous wreck about this. And the heat here isn't helping, my left shoulder, arm and leg are all spazzing out and sore. Ok enough :-/

9 Replies

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  • Bamfan1442, go ahead and get it off your chest. I have found that just going ahead and telling the truth about how you really feel and have it written down so you don't forget anything, your new doc won't know unless you tell him. Be yourself and stand up for yourself, let us know how you get on. Blessings Jimeka 🦋 🌈

  • Thank you jimeka ! I have things "written" down, but it's on my computer in a Word document. Since I don't have a printer, I E-mailed it to myself. But each time I want to add to it, I have to go back into my document and type in the new stuff, then email it to myself again. Oh well, at least I have some record of it! But it's even more daunting and difficult for me to actually write all of it down on paper, but not just because of the numbing, tingling pains in my hand and arm. I have written an entire notebook full of info, with phone numbers, addresses, email contacts, appointments, etc and can't do that anymore because now I have more paper trail mess than I can deal with! ;-/ lol thank you for your kind advice, I will follow through with it! :-)

  • Bamfan1442 I was seeing a new PCP and because, at the time, I had the constriction around my waist/chest (ms hug) and numbness, she sent me to a neuro. When they recognize the certain things that only go with MS, they send you to a neuro. Hope this helps.

  • Yes, it does help very much thank you Iona60 ! I suppose I just need to focus in on the numbness, tingling and twitching muscle spasms, rather than just the pain and fatigue. Although the fatigue issue goes along with everything else, because I know I'm stressed from being numb and in pain all the time. Hopefully this time, I will be making a trip to a neuro, and not to the drug store for more "quickie" fix prescriptions for pain and spasms!! :-/

  • Definitely tell him about the fatigue issue. That is a tell tale and common symptom of MS. As of today one of my worst symptoms. There are many meds for this and I will be talking with my Neuro next week about changing me to something new as the amantadine isn't working. As of now most days in dead in the water due to fatigue. Good luck and God bless.

  • I was fortunate in that my PCP ordered an MRI when I presented with the numbness and tingling. I had other vague symptoms I was told were just migraine related. The MRI showed multiple lesions and I was referred to neurology. The neurologist ordered more tests, but it was just to confirm the diagnosis. Every doctor is different in their approach, and diagnosing MS is sometimes difficult, but I recommend being persistent in asking questions until you feel they have been answered. I'll be praying for your answers to come soon and to be clear. Hang in there. We are all familiar with what you're going through.

  • Bamfan1442 Ugh, blows my mind, MD's write referrals for people they believe are just crazy all the time, it doesn't cost them a thing to do either. Some insurance plans do not require a referral to specialists. Some do, but that is set aside as soon as you have an ER visit where a specialist was recommended for follow up (along with "follow up with your pcp" "return of symptoms worsen"). And then some plans hose you at every turn.

    I had some pretty classic symptoms and MS was ignored by ER, missed by a neuro surgeon I worked with, then a neurologist (all at one of the best facilities in the country) and before that had two PCP's miss less obvious complaints. Not saying to discourage you, just that it happens. I missed the signs myself for many years.

    I would feel comfortable with a doc who wanted to find out what the issue is and not stick a fibromyalgia bandaid on it. Doctors are people, just be honest. Tell them you are there because want a second opinion and that if they think it could be MS, then you would appreciate a referral so you start therapy right away.

    The relapse that got me the MRI (that got me diagnosed) involved vision loss from optic neuritis, btw.

    GL!

  • Good morning,

    I know exactly what you're going through. I went through three years before I got finally diagnosed. The neurologist that I have now I have been seeing for 16 years. Tell your neurologist everything about your symptoms. Just make sure you are comfortable with him or her. Is this could be a long time relationship. I wish you the best of luck.

  • Hi Bamfan1442! I hope you had a good appointment with your new PCP. It's frustrating when you don't have answers for sure. It took me a slew of doctors and close to a year to get the proper diagnosis so I do understand the pain of the journey. But you want the right answers because treating you for the wrong thing can cause you harm. Many of the drugs for M.S have serious risks that you dont want to take if it's not M.S.

    You say you've been diagnosed with fibro and chronic fatigue but you don't believe it because of the research you've done on your symptoms. I don't know what you've looked at but if you go to this link, as an example, fibrocenter.com/fibromyalgi... you will find that fibro does cause many of the symptoms you've described. One of my good friends has fibro so I recognized that some of your symptoms could be that. There are a lot of symptoms in common between several conditions.

    I'm not saying I don't believe you just cautioning you that self diagnosis can lead you astray. Good luck!

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