AnonymousApril 7, 2010 at 9:43 am
Have I ever said how much I HATE all of this?!?!? 😡
I went to my ENT yesterday, because of continuing, chronic sinusitis issues. I’ve had two surgeries in about 5 years, and lately have had horrible symptoms similar to a bad sinus infection. Headaches, eye pain, nose pain, etc., all the “classic” symptoms.
After a thorough exam, including “scoping” my sinuses and other tests, he said that he can’t find any blockages, polyps, etc., and no signs of infection. His best guess…”Paranasal Neuropathy”. He’s ordered an MRI for Friday to rule out brain lesions or tumors, but doesn’t feel those are “probable”.
So…now….in addition to symptoms in my legs, arms, wrists, hands, feets, torso, I now have diagnosis and symptoms in my brain bucket. I’ve had some facial numbing in the past, which I assumed was associated, but the thought that it’s so close to my brain is unsettling, to say the least. It would explain, though, other things like my irregular sense of taste. Things will taste extremely spicy or salty to me, at times, while my wife will eat the same thing and say there’s absolutely nothing wrong with it. Other times it’s similar to having a cold…nothing tastes “good”. Just don’t want to eat…no appetite and nothing tastes or sounds good. Have started having unusual smells, too. I know others have talked about a phantom “electrical” smell; I’ve had that, I’ve thought something was on fire in the house, and onions…for some reason I get a sense of an “onion” smell about the time things flare up. Towels, hands, etc., when I’ve not been cooking, will have a horrible onion smell to them…or at least I “think” they do.
All of this, and yet no neurologist seems to want to take this all seriously…they all proclaim it “a minor neuropathy”. If this is minor, I can’t imagine “Major”…. :rolleyes:
Have I ever said how much I HATE all of this?!?!? 😡
April 7, 2010 at 10:03 am
You have got to go to Mayo if there are no docs you can find in your state willing to help. You can’t let this keep building. Before you know it it will be major. What about an imunologist or rheumatologist, the neuros obviously are not listening.
AnonymousApril 8, 2010 at 4:51 am
Sounds very familiar Elmo – I think in my case I had more obvious cranial nerve damage that helped pinpoint the problem (my face was paralyzed) but all those symptoms of variable taste, sensation, smell etc. I was told were due to the cranial nerve damage though I can’t remember which ones were responsible for which sensations specifically. It nearly drove me and my husband crazy too – I’d swear I was smelling smoke, or burning plastic, or rancid oil, or something equally pungent and my husband would be looking at me like “did she just have a stroke?” I learned to live with it and after years of treatment and recovery I rarely notice the smells anymore, and when I do I kinda laugh now at how confused we all were in the beginning. Instead of mentioning the smells to my husband I’d just do a tour of the house to reassure myself it wasn’t flaming and go back to whatever I was doing. I still don’t have much of a sense of taste and no interest in food – I think I’ve mentioned before that I should weigh as much as a paperclip as much as I eat but sadly I’m still bloated from the Ig treatment so I’m not quite there yet. :rolleyes:
I had some MRIs done awhile back and they found some “small” lesions of “insignificant” impact which all of my doctors have assured me are likely completely asymptomatic and not all that uncommon in people my age (over 40). Before you panic and think your brain has turned to oatmeal (as I did years ago) while you are waiting for the MRI – consider this…if you have facial numbness you may have demyelination of some cranial nerves, if they are sensory nerves (numbness is a clue there) then it is possible that damaged sensory nerves are sending mixed signals to your brain – not the other way around.
I think there are some mixed opinions on whether cranial nerve damage is part of CIDP or should be classified as Miller-Fischer variant or something else. My doctor goes with “cranial and autonomic nerve damage can be part of CIDP”. I really don’t care what they call it as long as it gets fixed and those symptoms are finally starting to go away… at least the smells are – taste is still off but I don’t really care much for food anyway.
Good luck Elmo – you aren’t crazy, your body is just confused. And I’m with you on the internist too – it took me many years to realize I had to stop treating my neurologist like he could solve everything… “that’s why they have specialties” my husband says. :rolleyes:
P.S. All those sinus symptoms I also had and they were made worse temporarily by IVIg as a side effect. Now that I am on sub-Q I do not get the heavy-duty flu-like symptoms I did with IVIg so I can tell the difference between a numb tingly nose caused by IVIg vs. nerve damage. I can’t remember if you get IVIg or not but if so see if it gets worse within 1-4 days of IVIg treatment and then gets better, the IVIg definitely made it worse for me but those symptoms were already there before I was getting treatment.
April 8, 2010 at 5:19 pm
Thanks for writing about the weird smells. I too have had the family search the house for a non existant electrical fire.
For the last 6 months I have been constantly smelling cigarette smoke – really disgusting, even nauseating: like the bottom of an ashtray. (Why couldn’t it be BBQ?)
My family doctor said to take extra zinc and that helped for about a week. But it is back even as I type.
Sigh. This is such a bizarre disease.
AnonymousApril 9, 2010 at 12:08 am
I sit here with 89 degree temperatures outside and me with a blanket over me inside – no air conditioning on, so I am sure the house is warm. When I wake up in the morning, or from my many naps my mouth tastes like I’ve been sucking on nickles. Not as bad as the ash tray, but gross still the same. I take dramamine because I get so dizzy, just sitting in my beloved arm chair. 5 months in, and I am sure I have at least anither 18 to go. Someone should write a pamphlet about “The Real People With GBS”, or maybe a TV show. We are no weirder than all those housewives! 🙂
Yup, we all hate this disease – but it has given us the opportunity to meet a great, diverse group of other GBSers. We are in a class by ourselves – and oh, so exclusive! 😮
AnonymousApril 9, 2010 at 10:00 am
I guess it’s somewhat comforting to know that you’re not the only one that things are happening too, but in a twisted sort of way… :rolleyes:
Had a couple of skin biopsies done yesterday; won’t have the results of those until next week. Have another brain MRI today; again, won’t know the results until Tuesday. One good thing about all this…my ENT is much more willing to run certain tests than my last neurologist was, so…I guess I’ve found a doctor who I can maybe go to when I need a test run. Kind of a roundabout way to do it, but you do what you have to, right? It was also interesting to hear his opinion on another MRI; the neuro’s to date have all felt like the MRI from 18 months ago was an adequate source of information. He STRONGLY objected to that…said that with the type of symptoms I’m having, and how quickly they’re progressing, that repeating it every six months for a while would not be unreasonable at all. Taking my old films in with me today and going to ask that they be used as a comparison.
For those with vertigo…I’ve had to deal with it for about nine years now, and would like to offer a couple things I’ve learned. If it’s fairly minor, (to me minor means you can get out of bed) I like to start with antihistamines. Most vertigo meds are just really strong antihistamines, so sometimes a “standard” dose will help, won’t put you to sleep for eight hours, and won’t dry out your mouth too badly. If I have to elevate from there, I usually take Meclizine. One thing I learned a long time ago…if you need to take a strong vertigo or travel sickness med….take it at bedtime, and it usually will still be working the next day, but you’ve already slept, so you’re not quite as drowsy. Another important consideration…as we’ve talked about in another thread…HYDRATION!!!!! I’m convinced that whether vertigo is a physiological problem or whether it’s nerve related, drinking lots and lots and lots of water helps!! What I’ve been told, and verified on a personal basis, is that drinking a lot of water helps by keeping fluids moving. Kind of a constant replenishment system, or recirculatory system. Do you want your body trying to “reuse” the old, nasty water that’s been in your body for a few days, or do you want it using fresh, clean, re-charged water? 😀
Thanks again, and I’ll keep you posted. Seems like things are “happening” right now after a lull in all the testing, etc. That’s good, but it also makes me realize how I’d like to just KNOW what is going on so we can move on to a better, more adequate, treatment regimen. But, I’m getting there, I think. Slowly, little by little, I’m chiseling away at all the “what-ifs” and objections, and the final product is starting to come into view, I think. At least I hope so…
AnonymousApril 10, 2010 at 9:04 pm
Sense of smell and taste are very closely related… Honestly? I’d rather you have THIS problem than something else that the MRI’s mite discover… You know what I mean?
Absolutely DO do a replay of every concussion, fall etc. that you mite have had in your lifetime tho? As these can show up as scars in the brain tissues… Best they focus on new damages and not the old?
Don’t forget to read the s/e’s of the meds you are taking as well, some of them do a real number on either taste or smell as well and are reported.
With every new ‘wrinkle’ one tends to go 😮 and get even more stressed? Just get a copy of the reports and try and wrestle with it yourself. I could point you to places? But you would be better off learning the places YOUR reports lead you to and learn from them.
My response to ‘:eek: situations’? Is to sigh and do more research based on the key words in the reports.
That your doc is going to monitor your MRI’s? That is wonderful! You’ve gotten past the ‘imaginary’ patient part to the REAL PATIENT! You’ve hit pay dirt! Great job in finding a good doc!
Dry mouth? Occurs with many meds – biotene mouth lotion or spray [I get it from Rite Aid] is about $6-10 for a little bottle? But it does help in this quarter. 1-2 times during the day? Definitely rite before bed at nite. It’s not a great ‘taste’? But it is bearable, and, you get used to it. It can’t hurt at least.
I suspect that suddenly after your ‘lull’ things will pick up and once again move very fast! It’s like being on one very bad carnival ride, isn’t it? You think the ‘ride’ is over…then it starts up again. Me? I’d rather have a wild and classy party of some sort! Don’t know about you? I WANT FUN! Hope you find some and soon….
AnonymousApril 11, 2010 at 1:02 am
Wow the more I read the more I do not feel alone! i have had trouble with taste and smell for at least 23 yrs.. long before I was diagnosed. It started after my first child was born. One night I made ginger chicken ( with real ginger) I keep adding more and more. i served it to my husband and he started crying it was strong where as I could not taste it. It has varied over the years. Went for a while wher everything tasted and smelt like pinesol cleaner. It happened again after my last round of ivig everything had a waxy taste. it is slowly coming around. I too have little interest in food but can not get the weight off. Maybe now that I can no longer get ivig I will lose the weight.. tho I may be back in a chair if I can not get approved for the sub ig.
You must be logged in to reply to this topic.