Guest guest Posted August 7, 2002 Report Share Posted August 7, 2002 My expierience was, as a previous salon stylist I had been told it was carpel tunnel. I had not had a test to confirm, but repeatedly had been told this was it. I assumed it was, due to the fact it seemed to worsen with activity. Then I found out I had Chiari and then after a MRI which included Thoracic Lumbar and Cervical Regions it was found I had a long but thin syrinx on my spine. I was then told that this was causing my hand pain and also my " Growing Pains " in hips arms legs feet shoulders etc. (what a joke I'm 25....who is still growing at that age?) I didn't even think to related the 2 because my hands hurt so bad and mostly with motion. After being decompressed in June so far so good no problems. Chiari can cause alot of nerve pain and damage. So many symptoms are a result and usually you need other tests to confirm, it is not the obvious, such as carpel tunnel. I reccomend you talk to your doc and see if you can get the appropriate tests He/She determines to find out what is wrong. And yes, it could be Chiari related. Hannah I too am a righty and left hurt worse. > > > Date: 2002/08/07 Wed PM 10:04:52 EDT > To: chiari > Subject: questions > > I just found out in June I have Chiari. I will see Dr. Oro in Oct. > My questions are: Does anyone have bladder problems? My left wrisit > hurts..gets numb, hurts, weak and at times freezes up. I am right > handed so I never understood this. I am a pet groomer and I thought > it was because of my job that my wrists hurt. But my left hurts more > and I don't use it as much as my right. Is this a Chiari thing? > Last question (tonight)I have noticed in the last few weeks that my > eye sight is getting bad fuzzy and then is fine. It comes and goes. > I don't feel great presure but when I blink it hurts...I know that > doesn't make sence. Was wondering this is Chiari or do I need > glasses. Thank You! > > > Help section: http://www.yahoogroups.com/help/ > > NOTE: NCC refers to posts with No Chiari Content > > To Unsubscribe Yourself: > chiari-unsubscribe > > WACMA Home: Http://www.wacma.com > > WACMA Online Group: http://groups.yahoo.com/group/chiari/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 I have the same problem with my wrists. I am right handed & my left wrist would hurt, freeze-up, ache, go numb, ect. Then it started happened in my left elbow. My doc. said it may be Chiari (wasn't really sure) & I have a wrist brace to wear when I type or lift heavy things & it does make a difference. (I got mine at the local drug store for like $6) But then it started happening on the right side. My nsg. says because it is progressing/spreading it is probably caused by the Chiari. I have bad vision (always have), but when it started getting worse I went to the eye doc. & he didn't even know what Chiari was but said I don't have any nystigmus. He says my vision has just gotten worse & I needed new contacts. They made a difference for awhile, but I have noticed lately that my vision is getting bad again. Hope this helps. a in WA To: chiari Subject: questions Date: Thu, 08 Aug 2002 02:04:52 -0000 I just found out in June I have Chiari. I will see Dr. Oro in Oct. My questions are: Does anyone have bladder problems? My left wrisit hurts..gets numb, hurts, weak and at times freezes up. I am right handed so I never understood this. I am a pet groomer and I thought it was because of my job that my wrists hurt. But my left hurts more and I don't use it as much as my right. Is this a Chiari thing? Last question (tonight)I have noticed in the last few weeks that my eye sight is getting bad fuzzy and then is fine. It comes and goes. I don't feel great presure but when I blink it hurts...I know that doesn't make sence. Was wondering this is Chiari or do I need glasses. Thank You! Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 I have the same problem with my wrists. I am right handed & my left wrist would hurt, freeze-up, ache, go numb, ect. Then it started happened in my left elbow. My doc. said it may be Chiari (wasn't really sure) & I have a wrist brace to wear when I type or lift heavy things & it does make a difference. (I got mine at the local drug store for like $6) But then it started happening on the right side. My nsg. says because it is progressing/spreading it is probably caused by the Chiari. I have bad vision (always have), but when it started getting worse I went to the eye doc. & he didn't even know what Chiari was but said I don't have any nystigmus. He says my vision has just gotten worse & I needed new contacts. They made a difference for awhile, but I have noticed lately that my vision is getting bad again. Hope this helps. a in WA To: chiari Subject: questions Date: Thu, 08 Aug 2002 02:04:52 -0000 I just found out in June I have Chiari. I will see Dr. Oro in Oct. My questions are: Does anyone have bladder problems? My left wrisit hurts..gets numb, hurts, weak and at times freezes up. I am right handed so I never understood this. I am a pet groomer and I thought it was because of my job that my wrists hurt. But my left hurts more and I don't use it as much as my right. Is this a Chiari thing? Last question (tonight)I have noticed in the last few weeks that my eye sight is getting bad fuzzy and then is fine. It comes and goes. I don't feel great presure but when I blink it hurts...I know that doesn't make sence. Was wondering this is Chiari or do I need glasses. Thank You! Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 , slurred speech is a symptom of PLS haven't heard anyone mentioned slurred speech. I cough sometimes but I do have asthma......................I see you are from North Carolina, I mention it only because Don & Betty will be holding their annual connection on Oct 8th in Rural Hall No Carolina. Its a chance to meet many fellow PLS'ers and speak face to face. Its really very gratifying to meet people who are facing the same problems that we all have. Hope to see you there............Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Although I have many questions to ask, right now I will only ask 2. Does PLS cause stuttering and slurred speech? (which I have and never have had....) and 2nd can it cause a cough? Evey Dr. and my allergist say it is from allergies but I cough all year round.I was tested for asthma which I dont have. I was wondering if anyone had same problems asscoiated with PLS. thanks , from n--NC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Hi , yeah i have the slurred speech, altho in the last couple of months it is not so slurred anymore. And I have the cough too. There was a post here last year where a PLSer mentioned the cough and there were many replies that those here have the cough also. Maureen in Australia > Although I have many questions to ask, right now I will only ask 2. > Does PLS cause stuttering and slurred speech? (which I have and never > have had....) > and 2nd can it cause a cough? Evey Dr. and my allergist say it is from > allergies but I cough all year round.I was tested for asthma which I > dont have. > I was wondering if anyone had same problems asscoiated with PLS. > thanks , from n--NC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 In a message dated 6/10/2005 4:50:32 AM Pacific Standard Time, briteeyestwo@... writes: When I was slurring I started chewing gum When I try and chew gum, I bite the inside of my cheek.... what's the old saying -- can't chew gum and walk at the same time...altho I wasn't walking. Alone we can do so little. Together we can do so much. Helen Keller (1880-1968) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Hi If you have the bulbar symptoms of PLS it affects your speech in a couple of ways and also affects the muscles that control swallowing. First my speech slowed, then I started slurring. I also had periods of time when I just couldn't make the vocal cords move correctly. As your swallowing is affected, the throat can spasm causing coughing 'fits' and I can't leave out the spasms that cause you to blow your coffee all over the table and wall. And that's if you still have enough soft pallate control to keep it from coming out your nose. Before I was put on muscles relaxants I found two things helped. When cooughing or having spasms I could take an ice cube and rub the outside of my throat. When I was slurring I started chewing gum. Now Cleveland Clinic recommends the gum chewing for slurring IF swallowing issues haven't kicked in. Eva > Although I have many questions to ask, right now I will only ask 2. > Does PLS cause stuttering and slurred speech? (which I have and never > have had....) > and 2nd can it cause a cough? Evey Dr. and my allergist say it is from > allergies but I cough all year round.I was tested for asthma which I > dont have. > I was wondering if anyone had same problems asscoiated with PLS. > thanks , from n--NC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Quote Link to comment Share on other sites More sharing options...
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