BEE

Havent been on for awhile good see the past posters still here..(miss you guys) and welcome to all the new ones:).

I have developed a cold a few weeks ago and of course it did its usual number on me..I know what infections do to us.

My question for all of u is that I have neuorapthy (or what is presumed) feels like tight rubber gloves on hands and goes up arms and makes them feel REALLY weak. Even sensations in my head like my nerves are twinging.

I am being treated at this time for some sort of Mitochondrial disorder with Carnitine and COQ10.

Those of you that get infections and neuropathy along with it. How long does it last? I have been weak and numb for more than two weeks. I am taking an antibiotic and I know that initself screws some people up. But geesh..is there any light to this tunnel?

I know it can come and go but it has been unrelentless along with just feeling fatigued. especially in arms.

Take care and good to see all of u on here(well you know what i mean)

Hugs..

Belinda

gastroparesis..is slow motility or none at all of the tummmy. There is a term also for the feeling of the lump in the throat. I posted quite a bit on this in the past. I have not been aon in a while though. I too have throat and esophageal problems probrably due to the fact that there are alot of nerves that line these areas. I also get a numb tongue and nasal area. I am finding out while this is rare it can be part of POTS. As some other patients have had these strange symptoms. Having a GI study done is a good thing..

Good luck dear it is a bothersome symptom. Hope they get to the bottom of it for u:)

I also have boughts with this..moreso in the winter. Hands,feet..etc. They also diagnosed periphial neuropathy. My extremities in the winter turn to ice and I end up wearing multiple socks on my feet. I think last year we were trying to figure out about a nose warmer..on this site.

Sorry to hear about the sores that is interesting and sounds painful and terrible. I too wonder what is casuing it much worse for you.

Bee

Amy..That is so much to handle your family and you are in my thoughts and prayers. I hopea ll goies ok with your son,mom,grandmother. I am sorry about the cardiologist. And hope that you find someone quickly so you don't lose the picc line.

HUGS..Bee

Two or three days before and a few days after I am weak and fatigued moreso than ever..there is definitelya correlation there. Wish they could do a little more investigating into it. Hang in there...

I have caclium deposits all over my arms and legs..only about two are noticeable from the human eyeball. Hope tht is all it is Jacquie..

yes..I recently had a hemmorage in my eye..and noticed that my clear matter on my eye was thickened via push up on eyelid and it bunched together. I asked doc about this e said it is casued somewhat by dehydration.

I too get this potassium levels are usually quite low..hang in there.

BEE

Melissa..I hope your doing okay. I am sorry to hear about this..hope the docs are figuring this out and getting you better.

BEE

vertigo for me was inner ear..i get the dizziness like I cannot hold my head up but not actual spinning like vertigo.

Yes especially when I am brave and take warmer than tolerable showers.

As is sometimes it is high too..and I have seen mine as many as 70 between and as close as 15 between maybe less. You sweetheart girl..it is scary at times to have these readings. I remember when I was first diagnosed this issue crossed my mind.

Hang in there..Bee

I agree on all of it..dizzy especially your statement. My autonomic papers from the tilt say SEVERE sympathetic dysfunction..I thought the sympathetic system goes along with autonomic if I am not mistaken.

ANd I have POTS,small fiber neuropathy and periphial neuropathy. Hmmm...not sure if they are all the same or not.

But that doc..needs to have an MRI of his brain becasue obviously he has a bit of brain fog going on.

My jaw is tgiht,my lips and tongue have been numb, feels like my nose is tight too like I cannot get air in..

and my left hand pinky ring finger are numb.

Anyone get this and figure out what it could be..other than maybe neuropathy.

I have periphial neuropathy for some strange reason I cannot figure out for the life of me what is making this worse?

all answers appreciated.

Bee

This was sent by Michigan Jan's son: As many of you are aware, Jeff Jones, (my dad) passed away this morning before 8 am. Below are details of the arrangements. Shortly there will be a link under the funeral home's web page under the obituaries were you can leave messages of condolence. My mother and father both greatly apperciate the support you have given throughout Jeff's lengthy and difficult battle against his cancer.

Ralph Jones on behalf of Jan & Jeff

Visitation:

Friday, November 17th 5-8pm

Vermeulen Funeral Home - PLYMOUTH

46401 W. Ann Arbor Road

Plymouth, MI 48170

Phone: 734.459.2250

Obituary link on Vermeulen?s site will soon be active and allow you to leave & share messages of condolence. Site also has map.

http://www.vermeulenfuneralhome.com/a/index.htm

Service:

Saturday, November 18th 11:00 am

Salvation Army Chapel

9451 S Main

Plymouth Twp. 48170

Tel: 734-453-5464

Map to Chapel

Http://maps.yahoo.com/maps_result?addr=945...;name=&qty=

Donations:

Plymouth Salvation Army

9451 S Main, Plymouth Twp. 48170, Tel: 734-453-5464

http://plymouthsa.volunteerfirst.org/public/default.asp

Barbara Ann Karmanos Cancer Center

4100 John R, Detroit, MI 48201

www.karmanos.org

https://www.karmanos.org/DonationWebApp/Donation.aspx

Recommended Lodging:

Red Roof Inn Detroit - Plymouth

I-275 at exit #28, Ann Arbor Rd

39700 Ann Arbor Rd, Plymouth, MI, United States, 48170

Phone: (734) 459-3300 Fax: (734) 459-3072

Reservations:

http://www.redroof.com/reservations/inn_de...p?innNumber=016

Map of motel:

http://www.redroof.com/reservations/inn_ma...type=&redi= As many of you are aware, Jeff Jones, (my dad) passed away this morning before 8 am. Below are details of the arrangements. Shortly there will be a link under the funeral home's web page under the obituaries were you can leave messages of condolence. My mother and father both greatly apperciate the support you have given throughout Jeff's lengthy and difficult battle against his cancer.

Ralph Jones on behalf of Jan & Jeff

Visitation:

Friday, November 17th 5-8pm

Vermeulen Funeral Home - PLYMOUTH

46401 W. Ann Arbor Road

Plymouth, MI 48170

Phone: 734.459.2250

Obituary link on Vermeulen?s site will soon be active and allow you to leave & share messages of condolence. Site also has map.

http://www.vermeulenfuneralhome.com/a/index.htm

Service:

Saturday, November 18th 11:00 am

Salvation Army Chapel

9451 S Main

Plymouth Twp. 48170

Tel: 734-453-5464

Map to Chapel

Http://maps.yahoo.com/maps_result?addr=945...;name=&qty=

Donations:

Plymouth Salvation Army

9451 S Main, Plymouth Twp. 48170, Tel: 734-453-5464

http://plymouthsa.volunteerfirst.org/public/default.asp

Barbara Ann Karmanos Cancer Center

4100 John R, Detroit, MI 48201

www.karmanos.org

https://www.karmanos.org/DonationWebApp/Donation.aspx

Recommended Lodging:

Red Roof Inn Detroit - Plymouth

I-275 at exit #28, Ann Arbor Rd

39700 Ann Arbor Rd, Plymouth, MI, United States, 48170

Phone: (734) 459-3300 Fax: (734) 459-3072

Reservations:

http://www.redroof.com/reservations/inn_de...p?innNumber=016

Map of motel:

http://www.redroof.com/reservations/inn_ma...type=&redi=

Directions motel to visitation:

http://maps.yahoo.com/dd_result?newaddr=39...amp;tcountry=us

Directions motel to service:

http://maps.yahoo.com/dd_result?newaddr=39...amp;tcountry=us

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Directions motel to visitation:

http://maps.yahoo.com/dd_result?newaddr=39...amp;tcountry=us

Directions motel to service:

http://maps.yahoo.com/dd_result?newaddr=39...amp;tcountry=us

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Yes mam..I think it definetly helped bring it out..

I stopped it becasue I believe liek you said once oyu are on it you r body will eventually adjust to needing it. I will try and remember what side-effects I developed it was a little less than a year ago.

hmmm...thanks maybe I will try them. Mine is due to DYS. but still. Another thing is Aloe Vera Juice helps to soothe the GI tract.

Amy I just wanted to say congrats I haven't been on in a while. And I hope that the side effects of the pregnancy continue to be as minimal as possible..

Bee

Just wanted to pipe in and say I am sorry for your misfortune going on..I was quite bed-couch ridden for some time. . I hope your body helps regulate itself..look into the florinef I know for me that gives me headaches upon standing and such. I am on a larger amount and there is a correlation with me.

Keep your head up J.

Bee

I deeply believe so in my own case..and have heard of others..

I am the exact same way..although I don't have one day that I am symptom free.

Hang in there..Bee

I hate to sa it but they are finding MSRA in our school buildings here in Ohio..Mostly football players are passing it around..open wounds etc. Big thing as someone mentioned is using the universal precautions.

I hope that your daughter does not indeed have it at any rate. So it will ease your mind and worries.

Take care..Bee

I have had it they think for about 2 years although I had acardiac ablation in about 2000-01 and for many years I was FINE ( no symtopms ) so I think that in form it is similar to have relapses of intensity and times where things are just bearable.

And times when you kind of forget(for some POTS sufferers not all).

I have found I have been angry and blamed others at times..keep your head up girl and if you are ffeling worse then think about maybe a med adjustement. Remember youa re your own advocate on this you kind of have to be.

Hang in there...Bee

Ummm..oops THANKS SOPHIA!!! FOR pointing that out..I meant compassionate but that sounds more interesting so I will leave it..

Lack of Oxygen..I swear