Odd Symptoms

[pickledfairy]

Just wondering if anyone can shed some light on these odd symptoms I have been having. The symptoms are slurred speech, numbness in my tongue, feet and cheeks, blue cold toes, muscle twitches in my calves, arms, chest, and face (only right side of face), generalized weakness, and feeling like I am in a dream state. The symptoms generally last for 15-60 minutes however, my legs are weak and I stumble and loose my balance for hours afterwards.

These symtpoms often wax and wane and althougth I have kept track of when they occur, I can't seem to pin point a specific time, incident, food, etc. that is triggering them, it seems they come on at random, although I have noticed that after physical activity they are always present. I have tried drinking Gatorade, eating honey and other tricks to help, but they don't seem to have much of an effect.

I been to the ER once for these symtoms and they were almost gone by the time I saw the doc and they did labs and found that only my PO4 was off so they gave me IV fluids and sent me on my way. I saw my PCP on Tues and she is running labs but thinks that unless we draw the labs during an episode then we may not catch what is happening.

I also have pretty severe gastroparesis, where I am basically on a liquid diet and am having a hard time keeping my nutrition up and it is nearly impossible to get all of my fluids in in a day without throwing them back up (I am seeing a surgeon on Tues and hope to have the gastric pacer placed this summer). So, I am not sure if my nutritional status has anything to do with all of this, but I guess the most recent labs will rule this factor out or in.

Any suggestions, thoughts, etc. would be helpful as I am getting frustrated and my parents are becoming worried.

Thanks,

Sheridan

[DanniBunny]

All your symtpoms are ones I have experienced at one time or another since my more severe symptoms of POTS first started nearly a year ago. I couldn't pin-point any triggers either despite keeping a symptom journal - other than being more active would cause more severe symptoms. I had a very complete work-up at Mayo to get my diagnosis of POTS - the slurred speech, genearlized weakness, and dream state were all included in that diagnosis. But they could not say defininatively if the muscle and nerve issues were realted or not - that seems to vary person to person and doctor to doctor. Unfornately, I've found out that more often than not, other than well known issues assoicated with DA, such as dehydration and the like, the ER isn't incredibly helpful since they are not well-versed in issues like this.

Have you seen a specialist yet? Are you on any types of treatment or medications? have you slowed down your actvity level? I'm just guessing but it sounds like you might be young, and I know how hard it is to say doing the simpliest things like going to school or the grocery store are too much, but I've found the one thing that has truly helped me so far is trying to do more from home. I take college courses online and have a 'station' set up in my living room so I have access to what I need on days I feel bad. There are many days where I get very frustrated by having to restrict my young life-style so dramatically, but its much better than feeling so sick 24/7.

I hope you find some asnwers.

[Ernie]

Hi,

I have had these symptoms at one point but I don't know what causes them.

[dizzygirl]

sheridan

hi i can relate to the symptoms you are experienceing.. im sorry tho that i do not know waht causes them only that i have them... i hope that you are feeling better tonight.. just wanted you to know that you are not alone...

hugs feel better

linda

[pickledfairy]

Thanks for all of your kind words and support!! I have had another pretty bad episode today. It is so disconcerting when I realize that every word out of my mouth is jibberish and that my muscles are shimming like they are at an all night disco fest!

Hopefully, something will pop up on my labs to lead us in some sort of direction. I can't wait to see my neuro next week!

[taylortotmom]

It is possible that dehydration is causing many of your symptoms. If you are unable to keep fluids down, you are not getting the massive amounts of fluid we dysautonomiacs need. It can cause all the symptoms you describe (Minus the blue toes which sounds like a circulation issue or a disorder called Raynaud's). Dehydration can also cause migraines which can cause the speech problems, tingling, etc- even if no headache is present. This is especially true if you are already taking pain medicine for other issues- as the pain meds may mask the "headache" part of the migraine. So, one thing you might want to consider is iv fluids- heavy iv fluids, even. Talk to your doctor and see if she is willing to set you up with some mega amounts of fluids- it will probably help tremendously.

[doctorguest]

A nutritional deficiency certainly sounds like a possible cause of your symptoms. Have you had your vitamins and minerals level checked? Are you taking a multivitamin? Hope you get some answers soon.

[pickledfairy]

taylortotmom: I have been wondering about the dehydration issue as well. Especially since my neuro tested me while in the hospital in Dec. and explained that my POTS responds better to rapid fluid induction (i.e. he squeezed in two liters over a short period of time) than drinking them , perhaps because of the GP. I see my GI doc this week and I will talk to him about the episodes and the possiblity of getting IV fluids.

Doctorguest: My GP ran a CMP with P04 and magnesium last week, I haven't heard the results yet and plan on calling tomorrow.

I will let you all know what I find out, thanks so much for your suggestions.

Sheridan