Anyone out there experience these weird symptoms?

Hi everyone, I have posted advice Before but, this time I am asking for help. I have a boat load of weird symptoms and am wondering if anyone else has been down this road?

It started slowly over a year ago. Cold intolerant (I used to go outside in 20 degree weather without a coat and it not bother me),Reynauds,intermittent swollen,stiff crackly fingers,LOTS of fine facial hair( I spend hours plucking& shaving my forehead,cheeks,jaw,under eyes),small amounts of intermittent breast milk( I'm 47 and my baby is 13),screwed up periods,every 2-4 weeks,brownish reddish pattern areas on my face( cheeks,I've tried everything nothing works) intermittent body temp regulation issues( my temperature will go up to 101 and I am watching t.v. In a 66 degree room mid winter), intermittent metallic taste,frequently smell cigar or cigarette smoke in my home. No one smokes in my family,not friends, none. New problems with muscles,feels different than MS, very tight neck and between hands go numb. I have massages every two weeks,do stretches,tried dry needling ( ouch!)Pt&OT weekly, all help temporarily,it makes sleeping hard and at times it limits my flexibility so badly, I can only move my head 15 degrees in any given direction.And awful painful.

Went to an Endocrinologist,my pituitary was " very pudgy" on my last 3 annual MS MRI. I though "Eureka this is the problem". My hormones must be messed up. Had Pituitary MRI= normal. Lab work for all hormone levels=normal.

Advice by Endocrinologist " keep log of symptoms " wait and see. Could be due to an MS lesion somewhere.

Neurologists( who has been dropping ball with me for years) says" not Ms related"

PCP- no clue. I asked to be tested for lupus,begrudgingly agreed ,not done yet.

I am frustrated and feeling like I did before I got MS diagnosis. I know something's messed up, I feel all these symptoms.Am I crazy, is it all in my head?

If anyone has any insight or been thru this your guidance would be most appreciated!

Have a great day and thank you for reading this way too long post!🙂

16 Replies

  • WonderMom Please don't apologize for a long post. If you can't express your emotions here, then this community has failed you. You have every right to feel plagued and ignored, and though I have not experienced all the symptoms you write about, I totally understand how you feel. Only those with MS truly know how very very odd its symptoms can be. Yes, most doctors recognize the classic, general symptoms. But similar to you, I smell odors that I KNOW are not there, and lately hear noises and sounds that I also KNOW come from within, not without. Sometimes these noises are so sudden that I startle like an infant - a whole body jerk. Whether anyone believes/understands/acknowledges or not is immaterial: they are real to me and puzzling. Because of the fear of being thought delusional, what is most painful about these sorts of events is that when we find the courage to tell someone, we are met with indifference or dismissal. Collectively, we should stamp our feet, raise our voices, and say "listen to me! Treat me with respect." I agree with you that it is probably neurological. I also believe that there may be no definitive answer, but it would be nice to have the respect of those we attempt to educate.

    See, my response is about as long as your post! But if I can't talk here, then each of us is in solitary confinement.

  • Wow WonderMom, you got the whole book of symptoms thrown at you. I'm not a doc, but It sounds to me like you've a combination of conditions going on in your body. Some of your symptoms could be attributed to early menopause. Speaking for myself, I went through a very early menopause and had similar symptoms. I would suggest just make sure you are getting your mammograms every year. And research the other symptoms. I've had times when I thought I smelled cigarette, cigar smoke. All could figure on that was the essence of someone's smoke carried in a breeze into my area. My daughter sent me this link this morning, if nothing else, it's interesting.

    I also have extreme sensitivity to cold or hot which I attribute to MS. I used to go barefoot all year long, now it's socks and slippers. I'm dreading summer weather. I sure hope you get some relief for all your symptoms and concerns.

  • Hi CalfeeChick,

    Thank you so much for your reply and feedback. They tested all my hormones and said I am no where near menopause so at

    East we can check that off. I'm with you my feet are always cold. And the thought of summer makes me wish for Alaska!

    Thanks for the link & support.

    Wonder Mom

  • I do not have an MS diagnosis, but am going through a process at the moment. About the smell thing, I have congenital anosmia which means I was born without a sense of smell, when I get a flurry of symptoms and I'm feel ill I get the strong sensation of smelling something now and then, I can't say what it is I sense but I suspect it might be smoke.

  • Hi tee8077,

    Thanks for sharing your story with me. I hope you get speedy diagnosis.

  • WonderMom

    Since you've seen both neuro and endo, I'm sure this has been checked but sounds like a prolactinoma/hyperprolactinemia to me. I believe a pituitary specific MRI protocol can better identify a prolactinoma. But they can be very small, missed, and yet cause numerous symptoms.

    Some meds (even common) can increase SPL (prolactin levels) and SPL levels should be checked fasting, AM (I believe) to identify elevations.

    No doubt MS lesions can affect all sorts of things but I've experienced specialists who are often to quick to say it's MS as soon as they hear u have that diagnosis.

    I hope you can get answers.

  • @WonderMom, people have a way of saying everything is due to menopause after you're over a certain age (45, maybe) but sometimes that is what it is. I'm not sure why they decided it couldn't be menopause--was it because you seem too young? I was about 46 and so was my mother. Early menopause tends to run in families.

    Every one of your symptoms could be due to menopause. The irregular periods particularly. If those aren't due to menopause, maybe you should find out what is causing them. You might have iron-deficiency anemia.

    I know it must be frustrating to have symptoms that have no explanation. I wish you luck in finding some answers.

  • Ask your gynecologist to check you for polycystic ovarian syndrome. Some of your symptoms sound like it.

  • Hi, it sounds to me like you need a referral to a good rheumatologist to rule some things out. Raynaud's + swollen fingers + tightness + skin changes on your face are somewhat suggestive of scleroderma. Request an ANA done by IFA be done if you haven't had this test recently, your PCP can order it if there's a wait to see a rheumatologist.

    Perimenopause can start years before menopause, and hormones can fluctuate wildly and widely during that time period. You may have a combination of things going on, and I hope you get some answers soon. Keep us posted.

  • Additional thoughts on the odd smells you're experiencing are that you should get this investigated by a neurologist who isn't dropping the ball - get a second opinion and work-up. I worry about a tumor or problem with the olfactory nerve. Not to scare you, but persistent smells that aren't there can be associated with serious conditions that at least need to be ruled out. Google phantosmia and parosmia for more information about phantom smells and their possible causes.

  • I too, have thought I smelled smoke, at times. Last year I was running around the house checking all of the electrical outlets to make sure there was no smoke or scorched marks. The smell would come on very quickly and go away just as quickly. My husband never smelled anything.

    This past couple of months it has been sounds. I had some ringing and buzzing a few times. One day I was playing on my tablet and heard crickets. I asked my husband, "Do you hear the crickets?" He just looked at me like I was crazy. I explained that I was hearing a chorus of crickets in my head. None of them have been loud or overly distracting thank goodness.

    I went into peri menopause at around 43, and it caused messed up periods, hot flashes, night sweats and migraines. My PCP, who was a young male, just kept saying that I was to young for menopause. I found a gynecologist, she checked my hormones and I was in peri menopause.

    The breast milk thing is really troubling. What did your doctor say about that? That is definitely a symptom that someone should be looking into WonderMom .

  • WonderMom I'm not even sure how to take your post.😞 I'm so sorry that you were given no answers.😕 But MS mimics other things. Or other things mimic MS. But no matter what, you need to find out what's going on with you.

    Get ahold of and they should be able to help you find a good neuro, if your not happy with the one you have.☺ 800 532-7667 ext. 154

    Like the others said though, start a journal with symptoms, dates and how long it lasts.

    I hope you get some answers soon!

    Jes 🌠

    ps long posts are ok😁

  • @erash,@morylln,@Jesmcd2,@dianekjs,agate,@plosed06

    Thank you everyone for your support and suggestions. I know it's not menopause, my hormone levels confirmed it. Just like my prolactin level was normal too. I have thought lupus in the back of my mind. I would imagine MS+some sort of Rheumatoid would send my body into a tail spin. My PCP did give me a lab slip to check this. Which I will get done.

    As far as getting a new neurologist,there are only 2 MS specialist in my state. I see one of them. I am of the current mindset that no one really knows for certain what they are doing in regards to my MS. They make guesses ,try more medicine and scratch their heads. I spend more time justifying my symptoms than they do listening. I even got hold of my records and found my Neuro had documented full Neuro checks that were never done, I know how to do and what a full Neuro check looks like and it was not done. My Neuro has documented for years I use a single point cane,never have... I went from a walker to a quad to a triple point. We are talking 6-7 years of inaccurate records, I report one thing they write another.... can you see my frustration?

    At this point, I know I don't have a brain tumor or an endocrine tumor. I figure either these nutty symptoms will stop or get so bad the cause is obvious. I just want to live my life,feel well enough to do what I want/need to do and raise my kids.

    As a nurse, if you had asked me 10 years ago ( I was diagnosed in 2008) my philosophy it was, "trust medicine and science, follow the treatment plan and you will improve". I did not believe in Eastern medicine at all,have a fever? take some Tylenol.

    Now,I don't have much faith in Western medicine. If anything it has made me worse at times. I now see the wisdom and have been helped the most by Eastern philosophy.I still take my meds to function but, know my Doctors& science/researchers are not all knowing. Listening to my body is my best bet.

    Thanks for all your help and support each and everyone of you are angels! Take good care of yourselves!

    Wonder Mom

  • You probably have several things (fun right!) I have osteoarthritis, raynauds, and MS. Sounds like that could account for some of the problems. Erash's possible diagnosis sounds like some of your symptoms. I. Would start with asking doctor to check for these first. Good luck!

  • @Angie Rowe Hi Angie,

    So sorry to hear you have so much to deal with, like MS isn't enough?

    I am going to get tested for lupus next,we shall see. I did get ruled out for a prolactinoma. I actually had one in 1998. And had MRI so no brain tumor anywhere. Prolactin level Normal. Weird right?

    Thanks for the support and sharing.

    Wonder Mom

  • So sorry to hear, WonderMom. I thought I had heard it all, but never heard symptoms like this before, except of course for the numbness. However, I wouldn't stop until you get answers. When you have to ask the dr to test you for certain diseases I think it's time to find another dr. You might try something like the Mayo Clinic or the Cleveland Clinic which have multi-disciplinary practices under one roof so that they can all communicate with one another and maybe come up with a better diagnostic strategy. Best of luck to you--you really need answers and I hope that you get them soon.

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