View Full Version : what next???
02-14-2008, 07:07 AM
ok background...undx...have many sxs similar to MS sxs...so far MRIs have been clear...sxs come badly when humid outside...(hense snowfall in this season), or when body is overheated, or when I am stressed....
I have hardly any sxs when preggo...
sxs include, numbness/tingling, pins needles, stiffness kind of muscles feel worked out but hadnt been type, cogfog,(results on neuropysch testing...very poor on memory recall, and attention), have fallen, balance issues, issues wth vertigo, others too...
so anyhow, went to a few different neuros, last neuro said anxiety, which no sxs when preggo cause then I am happy....:confused::eek:( I am a happy go lucky positive person most my life....when preggo last few times..I would think maybe some underlying stress..due to lost a baby full term in past )
anyhow...all my sidekick drs over the years, always ask..HAVE YOU been checked for MS....
anyhow..question is, I have a newer pcp, due to the one I adored moved away...I have met this dr, she is understanding like the last....I jsut wonder if any know how seriously bad I feel when humid/or overheat body....not many have seen my ailments....although I cant easily walk heel to toe walk.....
Just when feeling so blah...I dont think I should call each time all the time....but how do I know when I see her once in great while that she also doesnt start thinking anxiety....
she did understand my issues with balance, and having little kids..with this issue..and my weakness..enough to grant me a handicap 6month card, for parking...and said for my bad days...
I guess, I dont have a question...just venting maybe...it is snowing the pretty fluffy snow...love the prettiness of it...but after three years now of the winter humidity affecting me like the summer humidity...(8 years sxs...just the last 3-4 creeped more and more often)
just venting..thanks all....I did the travel away to a neuro thing..too...had them just look me over, look at the MRIs already read before..and say Fibro...then to come home and learn all about fibro(my mom has it) come to find out..naaaaa not fibro not even in his report...and pcp checked me out and really thinks neurological...ugggg sick of being sick of whatever I am sick with....thanks if you made it this far...haah,sarah
02-14-2008, 07:14 AM
I have nothing to offer but hugs. It must be so darned frustrating!
You're always in such good spirits that just posting what you did lets me know that you are not doing well today. Vent away!! You deserve it!:hug:
02-14-2008, 07:21 AM
Riverwild, many days I am not doing too good, I just try to be positive...it is my nature....:) Just after a certain amount of days, where I am having to be super duper careful even holding the baby....or holding walls to stay upright, from balance issues....after doing yoga and balance great..then because body overheated..at end left holding walls to walk....just having a rough one...your right....
I will read about how MRI reports can be read different from dr to dr to radiologist..and so forth...and it makes me wonder...and I dont like to doubt any drs..but really....then what the heck do I have...guess once in great while..I get where YES I want answers...but NO I am not going thru another neuro..or place...and spend time/money/energy/my excitement then plummeted.....to be told...anxiety/stress/these things happen to a womans body after ahving a baby/ things like this.....ugggggg
hugsss and thanks, riverwild....gotta get ready...Ciara and baby Maria both have school today...Ciara is speech delayed so goes to a disability school..and now they noticed and I let them test Maddie....who is delayed a bit on speech too...she is 9months but doesnt do the mama or dada or baba...just aaaahhhhhs....so tests at 3-5months ...so since at the school anyhow..might as well let her get the extra help ...
02-14-2008, 07:29 AM
Sarah I am going to offer my hugs also! But, I also want to stress how important it is to let the doctor know each time and when something new happens. When I had the Lhermitte's which was new to me. I was told to call the doctor and I did. My PCP wants me to call in and tell them when I am not doing good or something new happens. I was told that when you call that is documented and you need everything documented! I fully believe this now. I wouldn't of called but since I was told and told to I did and now I am a little closer and I have doctors who believe me....
I call my PCP and my Neuro's office and talk with the nurse or his assistant. I don't talk with the doctor. The nurse documents it and it is at least in writing.
:hug::hug::hug::hug::hug: Believe me I know how hard it is...
02-14-2008, 07:36 AM
:hug:Sarah I'm sorry that you are struggling. It must be so hard to have these symptoms for so long and docs still can't find out whats going on!
I'm sure it would be a total relief for you if you could just get some kind of dx other than Anxiety and/or stress.
I would call my docs everytime you get a new sx or worsening sx. That way they will know of your daily struggles.
Good luck! I'm thinking of you.:)
02-14-2008, 07:44 AM
thanks guys....not sure..havent had any new sxs...just same ones hit me...
I will think about calling in more often...that would be almost every humid day..hehehe
I have learned to control how body overheats or not, I have stopped power walking due to sxs....and started the yoga...as usually I dont overheat with it....this past time..the room I think was warmer than usual....
Just having a bad, no good, horrible sxs day, cogfogging, numb/tingling facial pain, and all the above..hugsss,sarah
02-14-2008, 08:19 AM
I know you've had an MRI, but have you had any of the other tests (EMG, VEP?) I didn't have them because I was a next textbook case, but they might help. What about getting a neuropsych test? I've heard that they can help show that your problems either are related to anxiety or not. That might be another nice tool to have in your arsenal when you go to a neuro next time. I hope that someone is at least treating your symptoms - no need to suffer even without a dx. Best of luck to you!:hug: Hope this day looks a little brighter.
02-14-2008, 09:01 AM
Greta, I had a neuropych testing done..the neuropysch said to me..that it seems neurological related..my memory/attention issues....not anxiety....but then this was before the last neuro...she said the report shows...I have ADD adult ADD..and that it is anxiety....I dont believe in this neuro that said this....the neuropysch who said what she said I believe in.....
I have had vision evoked yes...and passed, a bit closer to the number that dont pass but in normal range I guess...
anyhow...thanks so much...for support..and help..
on my way out to the school for the little ones...I called my mom for help...I dont think on day like today I can easily get to and from, in and out of school with the toddler and baby...so called in the help....so cogfogged out here...good to have someone with me..hugsssss,sarah
02-14-2008, 09:05 AM
I'm sorry you're feeling so poorly. Do you have a sympton journal? If not, possibly writing down how you feel each day - and anything new that appears - will help. You can highlight the new stuff and take the journal with you when you go to the doctor. This way you don't risk forgetting to mention something and they can see a timeline of when the new symptoms appeared. I do this on the computer - it's easier for me to type and faster, too.
I do this because I got tired of thinking of all kinds of questions and things to mention to my Neuro and then forgetting almost all of it once I was there. I'd get home and think "why didn't I bring this up while I was there?"
Just a suggestion - I hope things ease up for you. It's hard enough having all the symptoms when you KNOW what's wrong. I can only imagine how frustrating it must be without a dx.
Take care. :hug:
Hi Sarah! Quick question...Have your Dr's RX'd any Anxiety meds for you? Since the word "anxiety" has come up so much, just wondering.
Also, When you say "humidity" bothers you alot right now, I'm thinking well, the COLD bothers me, but the humidity of Summer really makes my Sx's flare. I wish they would just say anxiety to me. :( I'm heading back next week for more XRays, MRI's etc, as my Dr says I'm getting worse. :( I was so shocked when he said that, as I hadn't mentioned it to him)
Something we all like to hear, right? I don't want another DX of any sort, so I just try and get the sx's treated, which right now means. I need an overhaul. Hope you feel better soon. You have alot on your plate w/family, work and running around. Being a Mom is hard work.
(Your Docs are probably waiting for something to prove a DX aka McDonald Criteria, etc.) Probably not what you want to hear, but my cousin was wrongly given an MS DX for ten yrs. She went to an MS Spec and lo and behold... NO MS>>> It was Fibro. She was so mad, but also GLAD. The Neuro who wrongly DX'd her had passed away.
So, guess they just need to be and SHOULD be right B4 DX'g. take care....
02-14-2008, 04:36 PM
Hi Sarah, Just thought i'd send a HUG
Limbo stinks but we got to stick together,some day we will have our answers
02-14-2008, 04:39 PM
Afraid I don't have any answers (or even good guesses), just wanna show my support for you and send you lots of (((((HUGS)))))!
02-14-2008, 05:34 PM
I'm so sorry Sarah! You've really been through the wringer as far as tests and doctors are concerned. I have no words of wisdom I'm afraid, but I'm sending you lots of sunny hugs from across the ocean, from a place where humidity forgot to venture.
02-14-2008, 07:48 PM
Sarah how are you doing tonight? Any better? Cold does to me what humid weather does to you.... Hang in there - we are with you!
02-14-2008, 10:45 PM
........Cold does to me what humid weather does to you.... Hang in there - we are with you! :hug::hug:
I'm with you there Yeahbut! I do quite well in the summer, but once it turns cold I have to watch out. All of my most severe relapses have been in the cold winter months.... :eek:
02-15-2008, 09:20 AM
Sarah, you know you have my hugs and prayers. I hope you get some answers.
All I can tell you otherwise is how I do this.
If I had still been having kids, they would, I'm sure, been saying post partum to me just like they say it to you...
But they didn't have that to fall back on.
I was at the same point, didn't know where to go. I did have a decent neuro, who could not say it was ms, but couldn't say it wasn't either, so he said we could call it fibro. I didn't believe that either. You know that story.
I just said treat my sx and we'll see what happens. I don't know what's up with me and maybe never really will and that has to be okay, you know? If it's meant to be, it'll happen. I know maybe that is not the answer for you, but it was making me too crazy, too mad, to pset the other way, having to know the dx.
Does that make sense? It was too hard having to know for me. I had to let that go. I have to live right now and not think about how I'm gonna do this tomorrow or next week, because those things sink me.
And trust me, I am not strong enough to keep my head on that straight all the time.When you hear my crazy seeping in, that's the crack it seeps in through, lol.
02-15-2008, 09:51 AM
:grouphug: for Sarah.
I feel for you, and know it's rough.
been there, done that, own the T-shirt even...
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