Odd symptoms

I am a 29 year old gal who was diagnosed with autonomic neuropathy (most likely from an autoimmune sourse yet unnamed), POTS, hypovolemia, hypothyroidism, vitamin D deficiency,and gastroparesis in August of 2006 after a year of suffering. I also have asthma.

Because my GP is keeping me from consuming anything but liquids,not nearly enough of those of help with my POTS symptoms, to say the least I am struggling daily. I am seeing a surgeon on Tues to talk about pacer surgery and I am hoping it will at least get my GP symptoms under control so I can work on the rest of my complicated medical picture.

Now to my question I have been having these strange episodes and
would like anyone's opinion. 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 lose 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 ( but happen at times of rest as well). 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 (symptoms) 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 see a neurologist who specializes in autonomic dysfunction and plan on talking with him about these episodes when I see him in two weeks.

I would welcome any of your suggestions or thoughts as I am getting extremely frustrated and my parents are becoming worried.

(My current meds: 75mg qd of Atenolol, 20mg qid of Domperidone, 60mg tid of Mestinon, 100mcg of Synthroid, 300mg tid of Tigan, 10mg qd of Singulair, 20mg bid of Omeprozole, 1000IU of Vitamin D, Yasmin for BCP)  

Thanks for your input,
pickledfairy

[Annie62]

Hi AMO,

How have you been?  I'm still around on the board, I just don't read all the new  posts like I used to--so many of them now I just don't have the energy and time.  I missed this post--thanks for pointing it out to me.  She didn't mention dysautonomia in the subject area so I passed right over it.  I'll have to write something to her.

I went to see the new PCP and I think the appointment went well--thank God.  He seems like a nice person-easygoing and not that abrupt, all-knowing type that clashes with my personality.  I also had a chance to voice (briefly) what took place over the past 13 years with the other doctors (his colleagues) discounting my symptoms and what happened with my old PCP (dumping me), and he listened/didn't try to shut me up like my ex-PCP did during my last appnt. with him, so that was good :)  I don't see him again, though, until July, so hopefully by then he will have had a chance to review some of my records from Mayo, etc.  It seems like a long wait.  I was hoping to talk to him about putting me on something to help with my fatigue and possibly something for my sleep, but I guess I will have to wait and address that next time.  He also mentioned about needing to get me in to see a neurologist (good luck to him finding me one, that's all I have to say!).  Anyway, at least I've got what appears to be a good PCP now.  Let me know how you are doing.  I hope you are getting outdoors some to enjoy the weather.  

[AMO]

hi picklefairy,

so sorry to read you don't feelll welll.
i have not seen her here i awhile, but hope she does.
i had a cariologist dx' me with mild POTS due to what evver underlying neuro problem i have. Autonomic is not my most pronounced symptoms, they are movement.
But i do have wide variety of them too.
PO4.. is that potassium test?
that maybe some cause , if it is with electrolites and your liquid diet?
it couls be curious about vascular problem (with your autonomic system out of balance?)
i hope your neurologist can help you, it is tough trying to feel well.  take care.

[Annie62]

Hi pickledfairy,

I have also been dxd with autonomic neuropathy (most likely autoimmune in nature) in December of '06 up at Mayo.  Mine has been going on for 17 years, though (I won't get into that).  I'm sorry to hear that you have POTS.  I have read some on this but luckily I do not have that (and hope I never get it).  If you have POTS, do your doctors think that your (autoimmune) autonomic neuropathy is a primary one?  I kind of thought that POTS was mainly seen in AAN (primary) as opposed to autoimmune autonomic neuropathies that were secondary to other autoimmune diseases, but maybe I am mistaken.  I know (and AMO knows) it can also be seen with CNS diseases that have autonomic dysfunction as part of the picture.    

Do you have Hashimoto's hypothyroidism (if so, I'm sure you already know that is also an autoimmune disease)?  Sometimes hypothyroidism can cause gastroparesis, but I think it is usually mild in that case and it sounds like yours is severe and part of a broader autonomic dysfunction.  I know there is someone over on the GI support forum that has hypothyroidism and mild GP.  

I was also dxd with gastroparesis (severe) the end of July/August of 2006.  For me that was a turning point; my doctors did not believe any of my symptoms were organic until last year.  I assume you had the gastric emptying scan and yours is also severe if your gastroparesis is keeping you from consuming anything other than liquids--but I would really like to know more about this.  Do you have a problem with vomiting/nausea or only pain and bloating?  I'm curious about this because I have significant problems with reflux, bloating and a low-level of pain constantly (sometimes worse pain), but only occasional nausea and I have never vomitted from my GP (once dry heaves, but that is it).  From all the articles I have read it looks like vomiting is a prominent problem for most people who have severe GP.  I am trying now to not eat solid foods after the afternoon and eat only soup for dinner so that my stomach has more time to empty before I lie down to go to bed (since I started doing this I have noticed it is helping significantly with the reflux I was having every night).  What do your doctors/gastroent. say about diet?  My gastro has told me very little-just to eat small meals often.  I assume you drink a lot/consume liquids to raise your BP due to the POTS.  I am also on domperidone though only take 10 mg before lunch, dinner and at bedtime.  I was on Zelnorm for the GP but they took it off the market recently.  I also take AciPhex bid.  How did  it come about that you got recommended for a gastric pacemaker?  Is it due to your not being able to keep food down?  Sorry for all the questions, but there has been no one who actually has GP to ask these questions of/converse with (I tried with little success over on the GI forum).

Regarding your other symptoms:  I also have asthma (it was severe, now mild; got it in my 30s and I believe it is due to the chronic reflux from the GP).  I have also had slurred speech with the right side of my mouth pulling down (and other mild motor and sensory/tingling issues), but I have never had numbness in my tongue, feet, cheeks or anywhere else for that matter.  I do not have the blue cold toes or muscles twitches (other than occasional twitches in my eyelids).  I also have generalized weakness, especially in my chest muscles and arms.  These symptoms that you listed might be due to a totally different condition, especially if they only last for 15-60 minutes at a time.  It doesn't sound (to me, anyway) that this is from your dysautonomia, but I don't know, especially if you have an as yet undiagnosed autoimmune disease that your dysautonomia is part of (that's what I believe is the case with me).  Why would eating honey and drinking Gatorade help--do you think it's from low blood sugar?  It will be interesting to see what your dysautonomia neuro thinks is going on.  

Not many people on this forum with autonomic dysfunction.  I look forward to hearing back from you.