Re: speech

[Guest guest]

Connie,

It's good to see you back! Is the speech issue new, or just getting worse. You may want to check the ARCHIVES for the last couple of weeks-- I've found a bunch of sites that explain this issue in more detail.

do take care,

Tracie

NS co-owner/moderator

[Guest guest]

Hi Tracie,

I've been having trouble with getting access to the

internet. The last speech problem I wrote about was

new. When my pred had to be upped due to breathing

that disconnected words stopped, but lately the not

being able to say words, or names of things I know,

balance problems and I guess you call it myclonic

movement problems are getting worse. I was teaching

sunday school about 2 or 3 weeks ago and could not

stop my left arm from jerking up, usually it is just

my thumbs. The weird thing with the balance is is

usually only affects me if I am turnning to the left.

I have also started having headaches mainly in one

specific spot on the right side of my head. Normally

I don't have headaches. Go figure. My neuro said for

me to contact him if things starting getting

worse....I'm kinda thinking I better let him know.

--- tiodaat@... wrote:

> Connie,

>

> It's good to see you back! Is the speech issue new,

> or just getting worse.

> You may want to check the ARCHIVES for the last

> couple of weeks-- I've found a

> bunch of sites that explain this issue in more

> detail.

>

> do take care,

> Tracie

> NS co-owner/moderator

>

________________________________________________________________________________\

____

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[Guest guest]

Connie,

Do let the neuro know what is going on. It is important that he figure out why this problem is advancing. I doubt it has anything to do with the prednisone, it sounds more like a vasculitis or granulomas pressing on the spot of the brain that controls these functions.

A CT or MRI with and without contrast would be a good idea. That also would tell them if you are having TIA's or CVA's. (Transient Ischemic Attacks or Cerebral vascular accidents-which are transient strokes or strokes.) Transient means intermittent- and/or a stroke that is so minor that it doesn't leave a blood clot for them to see.)

I know that is scary, but truly we have to follow the "golden hour rule"--get it checked in that golden hour, and they can administer TPA--which is a clot buster, and the chances of permanent damage fall to very, very low percentages.

Take care, and call the neuro on Monday.

Tracie

NS Co-owner/moderator

[Guest guest]

Thank you Tracie for the information, sorry it took me so long to reply. I haven't had much access to the internet lately. I will be careful, strokes are a problem in my family. Thanks for everything.......Connietiodaat@... wrote: Connie,Do let the neuro know what is going on. It is important that he figure out why this problem is advancing. I doubt it has anything to do with the

prednisone, it sounds more like a vasculitis or granulomas pressing on the spot of the brain that controls these functions. A CT or MRI with and without contrast would be a good idea. That also would tell them if you are having TIA's or CVA's. (Transient Ischemic Attacks or Cerebral vascular accidents-which are transient strokes or strokes.) Transient means intermittent- and/or a stroke that is so minor that it doesn't leave a blood clot for them to see.) I know that is scary, but truly we have to follow the "golden hour rule"--get it checked in that golden hour, and they can administer TPA--which is a clot buster, and the chances of permanent damage fall to very, very low percentages.Take care, and call the neuro on Monday.TracieNS Co-owner/moderator

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[Guest guest]

Kat,

Some of the stuttering could very well be from the high dose solumedrol. That stuff is like speed in our bodies, and our brains can't catch up with our mouths, bodies, minds-- you get it...

You seriously need something other than the steroids. Plaquenil, Methotrexate, Imuran, etc---- are all good steroid sparing drugs.

There is a drug list in the ARCHIVES-- check it out.

Take care,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Thanks Tracie. Prior to the solumedrol I had trouble with saying one thing but meaning another but not stuttering. Then I had the 3 days solumedrol and then all hell broke lose and then I was placed on 60 mg of prednisone with monthly solumedrol iv treatments and I am now on alternating 20/15 mg of prednisone as they try to decrease my oral dosage and continue the iv treatments hoping to get me off in a few months time.

KatSee what's free at AOL.com.

[Guest guest]

HI Tracie,

Thanks. They are weaning me off the oral prednisone and trying to only continue solu-medrol for another few treatments and see how I do. I am getting better day by day and hopefully that will continue.

KatSee what's free at AOL.com.

[Guest guest]

Kat,

I had similiar issues with recalling words even before the pred or

any other drugs. The doc thought I was making it up so eventually I

stopped mentioning it. The first time I heard of anyone else having

similiar issues is when I came here. I always thought this might be

linked to the 'other' memory issues.

Peace, Tony

>

> Thanks Tracie. Prior to the solumedrol I had trouble with saying

one thing

> but meaning another but not stuttering. Then I had the 3 days

solumedrol

> and then all hell broke lose and then I was placed on 60 mg of

prednisone with

> monthly solumedrol iv treatments and I am now on alternating 20/15

mg of

> prednisone as they try to decrease my oral dosage and continue the

iv treatments

> hoping to get me off in a few months time.

>

> Kat

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

[Guest guest]

Hi Tony,

Well at least I am not alone. I have more problems obviously since I have gone back to work and answering questions in the office and it is embarrassing. I have had a bad day today since I am feeling sorry for myself and want to be the way I use to be. I get tired mentally and find myself forgetting to do things at work and at home and that is definitely not like me at all. I use to have the best memory in the office and anyone can tell you that. I even remember years back and what color folder it was and what color ink. Now I can't remember and it is so frustrating and I feel embarrassed. In my job if you forget to do something there can always be a grievance.

KatSee what's free at AOL.com.

[Guest guest]

Tony,

I too have stuttering and speech issues; without prednisone. It goes

along with my memory issues too.

Terri G.

[Guest guest]

Hi Kat, Before I was diagnosed with sarcoid and was still working, I started having those issues at work also. I worked at this company for 17 yrs. and knew just about everything that was going on in the front office. I was the office mgr/purch mgr/ did payroll and accounts payable. I had worked in other positions as well so I remembered a lot of information as to what happened in the past as you had mentioned. I could rattle off all the old customers and where they were from, where there information was and what type of business they did with us. Then I as you said, my memory started to slip and I started to feel very insecure in my position. My boss would ask me questions and instead of being able to rattle the answers off , I would have to look down ashamed and say " I will have to go look that up for you." It is frustrating and very embarrassing when your mind isn't

like it used to be. At home I would have the same issues, and my kids would start to make fun of me and say"Oh it's just Mom again!" It really hurts your self identity. I wish I had words of wisdom to tell you. Unfortunately, I don't. I can just say you are not alone . We are all here in the same place. If you need support , just ask and anyone here can help you out. Hope you are feeling better. Hugs, Debbie T. Co-Moderatorkatskreations1@... wrote: Hi Tony, Well at least I am not alone. I have more problems obviously since I have gone back to work and answering questions in the

office and it is embarrassing. I have had a bad day today since I am feeling sorry for myself and want to be the way I use to be. I get tired mentally and find myself forgetting to do things at work and at home and that is definitely not like me at all. I use to have the best memory in the office and anyone can tell you that. I even remember years back and what color folder it was and what color ink. Now I can't remember and it is so frustrating and I feel embarrassed. In my job if you forget to do something there can always be a grievance. Kat See what's free at AOL.com.

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[Guest guest]

Thanks Debbie. That is exactly how I am feeling. I never told my story when I started here a few weeks ago but my initial attack of sarcoidosis was in 1980 and it damaged my left lung and lymph nodes. I was fortunate it only hit there but I had numerous medical problems prior to the attack which they were having a hard time explaining like phlebitis in both legs etc as my body broke down. I had a huge weight loss. I thought I was in total remission but every year when it got stressful with temporary help hiring I would get erythema nodusum in my lower legs and one time I got a tumor in my ankle which they removed and found it to be sarcoid and I had to go on prednisone once when the erythema nodusum got really bad. So I have been good with sarcoid until December when I was diagnosed with optic neuritis. I had been stressing for months at work, trying to renovate everything outside and inside the house here and was working with chemicals, new carpeting, new flooring, paint, fumes and then I got hairspray in the left eye. I had been showing signs of autoimmune now that I think back but it did not sink in. The fatigue, dizziness, strange feeling in my thighs and I was not eating right for my diabetes. Then when the optic neuritis was diagnosed at christmastime I started saying one thing and meaning another and the memory loss was more evident at that time. It had been going on for months. I have been under a lot of stress with parental health problems, them passing away, my multiple other medical problems, surgeries etc which were major stressors during the last few years. It took them awhile with all the neurological testing and spinal taps for everything and even my ACE comes back within normal limits like it had in the past. So they had a hard time trying to rule out MS or sarcoid. They determined with my history of sarcoid that it is most probably NS. I have 2 to 3 lesions on my MRI. Cervical MRI is normal. My left eye is damaged but thankful my vision for close has returned. It has not returned to normal but thankful I can see. So now the doctors have me on a regimen on vitamins, calcium, magnesium, fish oil since I cannot take flax seed oil, tonic water for cramps as it contains quinine and sleep which I was only living on 5 to 6 for a long time.

So my regimen at present is monthly IV solu=medrol with oral prednisone. They are decreasing my oral to get me off of it and were doing it fairly quickly but I was reacting so they slowed down the pace. I am now going to alternating 20/10. I was at 60 mg for 2 months. They want me to try aricept for the memory loss but I am afraid to try other meds. I want to see how I do and I am hoping things will get better. I still experience problems with walking into things, tripping on carpeting, memory loss, stuttering, trouble with finger dexterity but they are tons better than January and February. I had to go on insulin while I am undergoing the prednisone treatments to control my blood sugar so that was something else I have had to add to the mix with high and low blood sugars. But, I am hanging in there. Some people are work are so caring and others are awful in what they say behind your back. It is hard accepting what is happening to you personally, let alone dealing with the comments you hear. I could never imagine making fun of someone because they have health problems. I brought my children up to respect people with all disabilities as it might be them someday. My daughter has been awesome with friends who have illnesses or disabilities but for some reason she is having trouble accepting my health issues for years and does not want to hear about it and does not want me to go to events she has. She is afraid her friends will be depressed. That has hurt the worst compared to what I am going through.

Thanks for listening and for your advice. It helps to talk about NS with others who experience it. No one really knows a lot about sarcoid and some say it is a made up disease and I wonder where they get that from. My daughters friends work in a lab and I cannot believe that they would say that it is a made up disease. I do not know where they got their training.

KatSee what's free at AOL.com.