Old 01-12-2013, 02:03 PM #1 (permalink)
New Member
 
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
petlover petlover is offline
New Member
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
Default Two separate questions

Sorry to start a new thread, but I have 2 specific questions for everyone.

As a recap, I was examined by a neurologist last Thursday. I have weakness in my left hand, left foot, and left side of my face. He is referring me to the local ALS clinic for evaluation and testing. My two questions have to do with two separate possible symptoms.

The first is this - around the same time my muscle related problems started (this past summer), I went to an urgent care clinic on a weekend as I had a urinary tract infection. They noticed that my blood pressure was really high. This was unusual, as I have normally had fairly low blood pressure. They advised I have someone check into it, so I went to a family residency clinic. The resident had me keep track of it twice a day for a month. It was all over the place, ranging from quite low (100/60ish) to pretty high (160/120ish). The resident was puzzled, but didn't want to put me on meds as he worried that my lows would get really low.

I didn't think too much about after that, but when I went a few weeks ago to the new GP to whom my friend referred me, it was 165/125. I mentioned to her about the erratic readings during the summer, and she has also asked that I track it for a month. She didn't think it could be related to my muscular issues. When I saw the neurologist though, my BP was only 110/62 or something, so I mentioned it to the PA, who brought up the possibility of autonomic nervous system dysfunction. Does anyone know if that could have anything to do with neuromuscular disorders? I can't find much on it, and I forgot to ask about it again before we left. Should I bring it up at the ALS clinic?

Second question - after the neuro finished examining my mouth and tongue, my teeth started chattering. I thought it was because I was nervous. Then it happened again yesterday after I brushed my teeth, and again last night in bed. I searched the forums here, and saw that several people have issues with teeth chattering, but it sounds like they have had the disease for quite some time. Can this happen early? Or is it more likely to be nerves? Again, not sure if it is relevant to bring up to the specialist. I don't want to sound like some neurotic middle aged woman bringing up every hangnail and pimple, LOL!

Anyway, thanks again for all the patient help from everyone on this board. You guys rock.

_____________________________

Lesa
petlover is offline  
Old 01-12-2013, 04:19 PM #2 (permalink)
momap53's Avatar
Very Helpful Member
 
Join Date: 2011
City: EGA
State: GA
Country: US
Diagnosed: 05/2011
Interest: I have been diagnosed with ALS.
Posts: 1,644
momap53 is on a distinguished road
momap53 momap53 is offline
Very Helpful Member
momap53's Avatar
Join Date: 2011
City: EGA
State: GA
Country: US
Diagnosed: 05/2011
Interest: I have been diagnosed with ALS.
Posts: 1,644
momap53 is on a distinguished road
Default Re: Two separate questions

Some of us do experience some autonomic dysfunction. I have had an intolerance to both heat and cold, as well as some occasional orthostatic hypotension and some tachycardia. Some PALS may experience some bladder and bowel problems that may be related to this dysfunction. I noticed Some of these symp toms during the di ag no sis. process.

Let your specialist know about these issues as well.
momap53 is offline  
Old 01-12-2013, 06:17 PM #3 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
Default Re: Two separate questions

Lesa unfortunately there are many diseases that have autonomic system dysfunctions and teeth chattering which can be a type of tremor. You can see them in A L S and also in autoimmune diseases like CIDP, MS, and Myasthenia Gravis. But it is critical that you write down your info. and discuss it when you go in for your next EMG at the ALS Clinic as some symptoms are more prevalent in certain diseases. Keep asking your questions as the more info. you can give your specialists the better.

Laurel
laurel is offline  
Old 01-12-2013, 10:02 PM #4 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: Upstate
State: New York
Country: US
Diagnosed: 07/2011
Interest: I have been diagnosed with ALS.
Posts: 3
susan702 is on a distinguished road
susan702 susan702 is offline
New Member (Say Hi)
Join Date: 2012
City: Upstate
State: New York
Country: US
Diagnosed: 07/2011
Interest: I have been diagnosed with ALS.
Posts: 3
susan702 is on a distinguished road
Default Re: Two separate questions

Great PA, read more: Dysautonomia - Wikipedia, the free encyclopedia
susan702 is offline  
Old 01-13-2013, 02:39 AM #5 (permalink)
New Member
 
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
petlover petlover is offline
New Member
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
Default Re: Two separate questions

Thanks for the info. I"ll make sure and bring it up. I bit my tongue so hard tonight, I made it bleed during a business dinner. Ugh. It hurt.
petlover is offline  
Old 01-15-2013, 02:02 PM #6 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
Default Re: Two separate questions

How did your MRI go? Do you have appt. yet at the A L S Clinic. Sorry about the episode of biting your tongue--ouch! And pretty awkward at a business dinner to boot.
laurel is offline  
Old 01-15-2013, 10:56 PM #7 (permalink)
New Member
 
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
petlover petlover is offline
New Member
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
Default Re: Two separate questions

Hi Laurel. I had a message after work today from the Neuro that the MRI was fine, as was all my blood work. I was really hoping they would find something in my blood work that was fixable. Bleh. Anyway, now that those are done, hopefully they can get me in to the ALS clinic soon.

In the interm, I am chewing the crap out of my tongue. After teaching four classes today, the edges look like the fluted edge of a pie crust. Is it swollen? Suddenly too big for my mouth? Or am I just a nervous wreck? Really weird, and not at all comfortable.

Again, thanks to all for being so thoughtful and considerate of all the questioners who find their way here.
petlover is offline  
Old 01-15-2013, 11:30 PM #8 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
Default Re: Two separate questions

Hum-m-m tongue chewing eh? You mentioned old autoimmune issues. I wonder about Myasthenia Gravis with you. Seems I remember taking care of someone with MG who did the tongue chewing, and had the blood pressure elevation. Just thinking and your autoimmune history makes me wonder.

Laurel
laurel is offline  
Old 01-15-2013, 11:38 PM #9 (permalink)
New Member
 
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
petlover petlover is offline
New Member
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
Default Re: Two separate questions

Yeah, my autoimmune stuff really makes me wonder as well. The neuro kind of poo-pooed it, but he's not an autoimmune guy. Autoimmune stuff is weird, weird, weird, as I learned from my last go around. I'm assuming the ALS guy will test for the various antibodies. I guess it would be weird for one autoimmune thing to morph into another, but they're all so weird . . . Wow, I just used the word "weird" five times in 3 sentences, LOL!
petlover is offline  
Old 01-16-2013, 12:05 AM #10 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
Default Re: Two separate questions

I think if you have a history of autoimmune disorders you are predisposed to others. I will be hoping for something autoimmune for you.
laurel is offline  
Old 01-16-2013, 12:17 AM #11 (permalink)
New Member
 
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
petlover petlover is offline
New Member
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
Default Re: Two separate questions

Thanks, Laurel! Me too! Luckily the specialist is at the same University where I was treated for my autoimmune stuff before, so electronic access to all of my records, including all of the lung function, heart, and kidney tests I had. Hopefully that will be of benefit.
petlover is offline  
Old 01-17-2013, 09:39 PM #12 (permalink)
New Member
 
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
petlover petlover is offline
New Member
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
Default Re: Two separate questions

Wow, I finally got an appointment with the ALS clinic . . . for April 8th! ACK! I mean, what the hell? What if I have something potentially treatable, and i won't even be assessed until then? So here is what I'm thinking . . . maybe I could call the referring neurologist and see if they would at least order all of the antibody tests that accompany the autoimmune stuff that can look like ALS? Any other suggestions of things I could do in the interim?
petlover is offline  
Old 01-18-2013, 12:36 AM #13 (permalink)
New Member
 
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
petlover petlover is offline
New Member
Join Date: 2012
City: Salt Lake City
State: UT
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 59
petlover is on a distinguished road
Default Re: Two separate questions

My last comment went off to moderation land. Anyhoo, I cannot get in to the specialist until April 8th!
petlover is offline  
Old 01-18-2013, 07:11 AM #14 (permalink)
momap53's Avatar
Very Helpful Member
 
Join Date: 2011
City: EGA
State: GA
Country: US
Diagnosed: 05/2011
Interest: I have been diagnosed with ALS.
Posts: 1,644
momap53 is on a distinguished road
momap53 momap53 is offline
Very Helpful Member
momap53's Avatar
Join Date: 2011
City: EGA
State: GA
Country: US
Diagnosed: 05/2011
Interest: I have been diagnosed with ALS.
Posts: 1,644
momap53 is on a distinguished road
Default Re: Two separate questions

Seems like a long wait. Hope you're a patient person. Waiting is so difficult when you're ready for answers.
Do let them know to contact you if they have a cancelation.
momap53 is offline  
Old 01-18-2013, 01:45 PM #15 (permalink)
Very Helpful Member
 
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
laurel laurel is offline
Very Helpful Member
Join Date: 2007
City: Anywhere
State: Western Canada
Country: Can
Interest: Other
Posts: 1,439
laurel is on a very distinguished roadlaurel is on a very distinguished road
Default Re: Two separate questions

In my husband's saga to get sorted out, we were frustrated with waiting times too. I made phone friends with the receptionist where he was wait listed for an appointment with the specialist neurologist. Told her that he would take any cancellation on short notice and then I phoned each week to check for cancellations. He got in within two weeks. Sometimes you have to be a squeaky wheel. Even with the autoimmune disorders sometimes the blood work comes back negative. That was my husband's case. We paid about $1500 for the Athena special testing and his was negative. The important difference for him was the diagnostic skill at interpreting EMG and nerve conductions by the new neurologist and the second difference was she gave him a trial of IVIG which he responded positively to. In essence she was much more informed and pro-active.
laurel is offline  
Closed Thread

Tags
als, bed, clinic, early, family, foot, friend, meds, muscle, neurologist, night, pressure, problems, questions, symptoms, testing, tongue, urgent, weakness, worried


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
separate rooms? tinyandme Current Caregivers (CALS) 22 06-11-2014 06:02 PM
Homecare Medical equipment (buy everything or separate good prices) - $900 (Granby,ma ortiz4 Used ALS Equipment for Sale! 0 04-29-2014 10:55 AM
Suggestion: Separate sub-forum for toileting adozi Suggestions, Problems or Bugs 0 11-15-2013 04:10 PM
questions GoGreen123 General Discussion About ALS/MND 3 03-15-2013 01:53 PM
some questions HeatherHayes Do I Have ALS? Is This ALS? 3 01-27-2013 08:29 AM
A few questions... Tonyjim Do I Have ALS? Is This ALS? 4 11-26-2012 11:00 AM
Questions on PBP jcmom General Discussions About PBP 13 03-04-2009 09:27 PM
Few questions to someone who might know. Daughter Joe General Discussion About ALS/MND 8 02-28-2009 01:14 PM
More Emg questions Beach61 Do I Have ALS? Is This ALS? 2 01-25-2009 03:51 PM
More Questions - Help asmileaday General Discussion About ALS/MND 8 03-27-2008 10:17 AM


All times are GMT -5. The time now is 02:26 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016