NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   OK, Just thinking out loud here (and venting). (https://www.neurotalk.org/multiple-sclerosis/38475-ok-thinking-loud-venting.html)

momXseven 02-08-2008 08:35 AM

Quote:

Originally Posted by lady_express_44 (Post 210191)
The rest might be buried in the tables, but perhaps I just didn’t pick up on the description? Have you had the rest objectively tested; for example, did the neuro find abnormal reflexes? Are you sure the symptoms are not getting worse from increased fatigue (which seem to go part and parcel with these kind of diseases), instead of increased heat? Is the trembling due to weakness or a warning of diabetes problems? Could some of this be attributed to thyroid problems? Etc...

Abnormal reflexes
Flashing lights in eyes
When I look up my eye lid doesn't always move up
Increase in severity of symptoms with heat
shaking/tremors

Cherie

I don't know if the neuro found abnormal reflexes. The SX do get worst with heat (as well as fatigue). I don't have diabetes, I was hypoglycemic until a few years back when I went IR because of PCOS, I check my glucose level a lot. My thyroid has been checked a lot, no problems.

DAY1 02-08-2008 08:43 AM

I was just wondering if you have seen a Rheumatologists? A Rheumy might be able to tell you if your symptoms were Fibro or if there was more to this.

Feel better hon,
DAY

momXseven 02-08-2008 08:46 AM

I think I have to cancel the eye Dr today :( I have two sick kids home today and my 3 year old. DH was going to watch the 3 year old at work so I could go but than when the 2 others came up sick he said he couldn't have them there and he couldn't come home that long. :( he's the owner, if he wants to come home he can :mad: He doesn't want to!

I just can't believe this, almost every Dr.'s appt. I make for my self I end up with a sick kid.
Before anyone ask, No, there is no one that can watch the kids. No family here, everyone around us works, our nanny/house keeper watches her newborn grand child in the day and can't watch a sick kid. I have a drop in daycare I use for the 3 year old when I need to but still have the sick ones to deal with. http://i90.photobucket.com/albums/k2...y/dontknow.gif

OK, vent over, I just wanted to let you guys now I'm not going to be seeing the eye Dr today after all.

momXseven 02-08-2008 08:47 AM

Quote:

Originally Posted by DAY1 (Post 210383)
I was just wondering if you have seen a Rheumatologists? A Rheumy might be able to tell you if your symptoms were Fibro or if there was more to this.

Feel better hon,
DAY

That was one of the Dr.'s I was thinking of also after I saw the eye Dr and the PCP. Thank you, I think I will do that before the new neuro.

Jodylee 02-08-2008 08:49 AM

Hi Julie!

I just wanted to let you know that I don't think that any of us are dismissing you.:) :hug:

We just want you to look at the big picture and try to use all of the avenues available to you so that you can find out what is wrong. :hug:

There are so many things that "look" like MS.

He!!, sometimes I still think I don't have MS even with a diagnosis from an MS specialist and the lousy mri's to prove it :D.

For one thing, you don't want to be put on a DMD without a pretty positive dx. I can tell you that my experience in the last 9 months since my diagnosis has been awful. That is putting it very lightly LOL.

Not everyone has problems with the DMD's but I've had nothing but more problems since I was on Copaxone and Avonex. Sometimes you feel like you've been poisoning yourself on purpose:rolleyes:.

Just think about all of your options. I think most of us, especially, newly-diagnosed MS'ers and limbo'ers benefit from therapy. Even our close family members benefit from it.

Hope your day is better today!:)

momXseven 02-08-2008 09:02 AM

Quote:

Originally Posted by joellelee2000 (Post 210389)
Hi Julie!

I just wanted to let you know that I don't think that any of us are dismissing you.:) :hug:

We just want you to look at the big picture and try to use all of the avenues available to you so that you can find out what is wrong. :hug:

There are so many things that "look" like MS.

He!!, sometimes I still think I don't have MS even with a diagnosis from an MS specialist and the lousy mri's to prove it :D.

For one thing, you don't want to be put on a DMD without a pretty positive dx. I can tell you that my experience in the last 9 months since my diagnosis has been awful. That is putting it very lightly LOL.

Not everyone has problems with the DMD's but I've had nothing but more problems since I was on Copaxone and Avonex. Sometimes you feel like you've been poisoning yourself on purpose:rolleyes:.

Just think about all of your options. I think most of us, especially, newly-diagnosed MS'ers and limbo'ers benefit from therapy. Even our close family members benefit from it.

Hope your day is better today!:)


Thank you, I know everyone here is just trying to help and not just dismissing me. I have done the therapy route before a few times, I'm not saying I will never do it again just don't think I will be doing any time soon.
Thank you :hug:

momXseven 02-08-2008 12:14 PM

Quote:

Originally Posted by momXseven (Post 210386)
I think I have to cancel the eye Dr today :( I have two sick kids home today and my 3 year old. DH was going to watch the 3 year old at work so I could go but than when the 2 others came up sick he said he couldn't have them there and he couldn't come home that long. :( he's the owner, if he wants to come home he can :mad: He doesn't want to!

I just can't believe this, almost every Dr.'s appt. I make for my self I end up with a sick kid.
Before anyone ask, No, there is no one that can watch the kids. No family here, everyone around us works, our nanny/house keeper watches her newborn grand child in the day and can't watch a sick kid. I have a drop in daycare I use for the 3 year old when I need to but still have the sick ones to deal with. http://i90.photobucket.com/albums/k2...y/dontknow.gif

OK, vent over, I just wanted to let you guys now I'm not going to be seeing the eye Dr today after all.


Well I reschedule for next Wednesday. Prayers I don't have anyone home sick that day. :rolleyes:

lady_express_44 02-08-2008 02:03 PM

Quote:

Originally Posted by momXseven (Post 210382)
I don't know if the neuro found abnormal reflexes. The SX do get worst with heat (as well as fatigue). I don't have diabetes, I was hypoglycemic until a few years back when I went IR because of PCOS, I check my glucose level a lot. My thyroid has been checked a lot, no problems.


I think you may have missed my point though, Julie. Almost ALL of the symptoms you have are on fb list that I attached, and the rest could be explained by other (perhaps yet unknown) conditions.

When I visit the doctor, he NEVER assumes a symptom is because of MS. He sends me for blood, glucose, ultrasound, EKG, COPD, Xrays, etc . . . and if nothing else becomes obvious up, he MAY blame it on the MS (if it makes sense to). Since you already have a dx that FITS almost to a T, the only symptoms that need to be checked at this point are those that DON'T fit. As was evident from my comparison of the fb chart to your listed symptoms, there really weren't too many there that don't fit that particular dx though . . .

Of course, a lot of your symptoms also fit MS too. :(

If you had not already had a MRI . . . or if the MRI had even one suspicious (but not confirmed as MS-type) lesion . . . or if your LP had showed O-bands, then I would say, get another opinion, pronto! However, your tests came up clean for MS-specific criteria (at least for now), so what can you or your doctors possibly do except wait?

This may very well turn out to be MS in the long run, but for now it is fb (and maybe some other stuff too).

We are just a bunch of low energy and very sick people, that are trying to find ways to keep our sanity with a very gross disease to contend with. Please don't think I am trying to tell you to go away or anything (we definitely can identify with many of your medical issues) . . . BUT I think you also need the support of a fb forum at this point. I have no doubt they will relate to your frustration over the feeling that something else is wrong, and this is where you seem to need the most support right now. :hug:

Cherie


All times are GMT -5. The time now is 02:25 PM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.