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 shoulders.my 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!🙂

11 Replies

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  • 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.

    anida.co/understanding-neur...

    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 parodmia for more information about phantom smells and their possible causes.

    nhs.uk/conditions/phantosmi...

    mayoclinic.org/diseases-con...

  • 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 .

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