I do have a demyelinating disease after all

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Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/2/2007 10:08 AM (GMT -7)   

Hi All,

 

I thought I’d write an update on my “status.” Several months ago I posted that I was taken off Copaxone because my neuro no longer thought I had ms. Anyway, he did refer me to an ms center, and I had my appointment with the specialist yesterday.

 

The ms neuro said that I do have a demyelinating disease, and he pretty sure it is ms. He confirmed that a lot of my history and abnormal clinical signs are consistent with the location of the lesion in my brain. However, he also feels that there is at least one other lesion on my spine causing other problems. He ordered additional tests, and at the next visit we will discuss diagnosis and treatment. Unfortunately, his next available appointment isn’t until February 2008, but it is worth the wait. In the meantime, I am supposed to call the ms nurse if I have any problems, need the ‘roids, etc.  

 

Sunny


Paris Girl
Regular Member


Date Joined Feb 2006
Total Posts : 33
   Posted 10/2/2007 11:19 AM (GMT -7)   
Dear Sunny,
 
I'm so glad that at least you are getting some answers finally. You'll be in my thoughts and prayers. Please keep us updated.
 
Hugs,
Paris Girl
in LimboLand

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/2/2007 11:21 AM (GMT -7)   
I'm sorry your diagnosis is confirmed...but it is too bad that you have to wait that long to get back on one of the drugs. Hang in there, and do keep him informed if you have any further symptoms, or worsening of existing stuff!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/2/2007 11:41 AM (GMT -7)   

Hey Friend

I"m so sorry this is taking so long, but very happy to hear that this doc is able to interpret u'r signs/symptoms and lesions into a likely dx for u. As i know u'r aware, being in limbo with all those symptoms u have is (at the LEAST) frustrating. U have my thoughts and prayers friend on u'r visit in Feb and in the meantime do as Uppitycats said and report all new or worsening probs. I know it must sound horrible to hear, but i'm so happy that u'r close to a dx...to an answer...and can get on meds. Take good care and let me know how i can help u.

 


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/3/2007 2:25 PM (GMT -7)   

Thank you so much for the support! While the long wait for an appt is a drag, I am incredibly grateful to have a neuro who is so knowledgeable and kind.

 

Yes, limbo is quite rough, huh. This second time in limbo I have really struggled both physically and psychologically. Having my “answer” and treatment abruptly (and not too nicely) revoked was a really jarring experience…it also happened in the middle of what the ms specialist seems to think was a flare. I am not able to work or drive right now, which has also made this limbo a lot harder to ignore than the first time around.

 

The return to limbo was also very hard to explain to friends and family. I felt like I had somehow deceived them by (previously) telling them I had ms, and I was also just pretty sick of talking about the situation. I lost touch with a lot of people during the past couple of months, because I didn’t know what to say to them. Has anyone else felt this way? Now that I have some answers, I know I need to tell my family. Even though I am not diagnosed and of course I don’t want to have ms, I feel a sense of relief simply knowing what is going on with my body.

 

Sorry for the long ramble. It really does help to be able to share this with people who understand…this stuff is just hard for me to write about in a clear manner (oops I am still rambling..lol).

 

Sunny


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 10/3/2007 8:49 PM (GMT -7)   

Hi Sunny :-)

I'm glad you posted this, your message was very clear and not rambley at all.  You've been through so much and I hope this new neuro is the key to getting a firm diagnosis and being able to move forward with treatment again.  It's such a shame that your old neuro confused and upset you by acting so abruptly (and wrongly by the sounds of it!).

You know I'm always here for you,

Shar


Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/3/2007 9:11 PM (GMT -7)   
Hey Friend

I"m so glad to hear from u!! I agree with Shar...u didn't ramble at all...i was glad to hear it all. U've really been thru it lately and we all know u've struggled. We're here for u...i'm here for u. U mean so much to us all here and we want to see u get the proper care and treatment u need and deserve. I"m so happy u'r new doc is doing that!

I know how u must've felt...as if u'd misled u'r family, but u can only go by what u'r docs tell u for the most part...and in the end it's all about what u'r experiencing and not the label u'r given. U'r symptoms didn't go away when the doc revoked u'r dx....u were still hurting and that wasn't at all deminished. Don't let how that doc made u feel become what u think of u'rself or how u feel u'r family and friends saw u. That was a quack doc and he's proven it in the way he acted with u. Now, u are back on a good path...moving towards a dx....and u can focus on making Sunny better inside. Do that. Lean on us here and elsewhere and don't let anything or anyone keep u down friend.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 10/4/2007 6:28 PM (GMT -7)   

Hey Sunny,

I am so glad you are on your way to treatment.  I know it is a long time to wait but if you like your doctor it is worth it.  Hang tough girl and know that we are all here for you.  You add so much to this forum.  Breathe and know it is going to be alright.  You need to go and get your hands dirty and get that yard planted and maybe even force some cool bulbs.  I know you would rather hear that you don't have MS, but you are strong and you will continue to fight.  We need you to stay strong so you can continue to do battle against the tomato stealing army of squirrels that are a blight to this world.  I am writing all of this so you actually know what rambling looks like. 

Love and prayers,

 


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 10/5/2007 1:33 PM (GMT -7)   
Sunny, You are too hard on yourself. You are not rambling in your posts. They are clear and well written. Gretchen, on the other hand, is a whole different story. Just Kidding! Oops, I think I have been grading too many papers! LOL
Barb/mystery reader
Diagnosed April 2007


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/5/2007 5:36 PM (GMT -7)   

I really, really appreciate the words of encouragement. I wasn’t exactly sure what I was saying, but I’m glad it made sense to some of you…lol. I continue to feel an immense sense of relief just knowing what is going on with my health…is that weird?

 

I finally saw the doc today after 3 weeks of coughing and wheezing. Apparently I have a lung infection. I hope this is why I am having more problems with my leg (which have now spread to the other “good” foot), and that this will resolve once I have the infection under control.

 

Since Gretchen brought it up…here is some true rambling for those of you who are following the squirrel gossip: the tomato-stealing squirrels seem to be gearing up for winter, and have become even bolder in their crimes. This morning two of them looked at me, ran down, snatched tomatoes, and then sat nonchalantly munching and dribbling tomato juice while I yelled at them. I am afraid I am no match for the little thieves, lol.

Sunny


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/5/2007 6:43 PM (GMT -7)   
Sunny
 
I"m so sorry about the lung infection!! My goodness!! U must be so sick! I'm so glad u saw the doc. Take good care friend and please do let us know how u are. As for the battle with the small furry animals...all i can say is....

HAHAHAHAHAHAHAHAHAHAHAAHAHA.....aaaahhhhhh.......AAAAHHHHHHHAAAAAAAAHHHHHHH........hehehehehehehehehe!!!!!! Go get 'em!!


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

Post Edited (rhondab) : 10/5/2007 7:50:35 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 10/5/2007 7:12 PM (GMT -7)   
My Dearest Sunny,

I am so totally not understanding why you are still having squirrel problems. I sent you weapons of mass squirrel destruction and yet you suffer from the squirrel infestation. Well, I for one, am no longer sympathetic. You have the tools at your disposal to disapatch those pesky rodents. Stand up and get the job done. I can hear those rodents laughing at you from here.

love and prayers and frustration,
Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/8/2007 9:41 AM (GMT -7)   

I finally slept through a lot of the night last night, so the antibiotics seem to be working. I had no idea I was that sick either, lol. I haven’t gotten sick in almost 5 years, and this certainly isn’t a normal case of the “cooties.” The problems with my leg/feet seem to be holding pretty steady, and I am especially relieved that the weakness doesn’t appear to be getting worse.

 

Rhonda and Gretchen, I’m glad you appreciate the seriousness of the squirrel situation here. You have seen pics of the tremendous cute factor these thieves posses. That cuteness is unfortunately more powerful than the “weapons of mass squirrel destruction” (good one G!) I have to admit that their antics really do brighten my day…but if they go after my flower bulbs, it is war!

 

Sunny


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 10/8/2007 12:40 PM (GMT -7)   
Hey Sunny!

WOOHOOOOO!!!!! Feeling better, eh?? VERY GOOD!!! Keep going with this healing u'r doing and feel good soon friend. The cooties are no fun, but sounds like u have the cooties with a whammy!! I"m sorry the probs with u'r leg and feet aren't improving, but u'r right, no worse is great. I'm keeping u in my thoughts and prayers friend and i just know u'r going to get better and better.

Don't listen to Gretchet...she is not sympathic and will not aid in u'r efforts to contribute to a kinder, gentler world. (as noted by her offers of 'weapons of mass squirrel destruction') I for one would offer up the peace offering i mentioned a few days ago. Plant a cherry tomato plant and offer these frisky furry friends some bite sized meals. This could serve to protect u'r prized plants as well as introducing the borrowers to the rodent version of a happy meal. Remember that their crimes are crimes of passion and they simply cannot resist.

Take care friend! ;)
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/8/2007 12:53 PM (GMT -7)   
My husband actually plants a "critter garden"....corn, beans, squash, tomatoes, and it is entirely for the critters...squirrels, deer, woodchuck, rabbits, whatever gets in there.    He just plants the garden, fences it off until it starts to come up, then takes down the fence and leaves it for the critters. And then there is the fox who comes to get the squirrels, and the raccoons who come and clean up after everyone else...  and an occasional (very occasional, thankfully! bear)...
 
We had tried a "people garden" for a couple of years...and it took SO much effort to keep the critters out, we gave up, went this route, and I buy my fresh veggies from the farmers across the road who have a HUGE "truck farm" and sell veggies from their barn..  :)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/10/2007 5:08 PM (GMT -7)   

Uppity, it sounds like the critters have trained your husband well. I’ll bet it is pretty entertaining to watch them “harvest” the garden.

 

Rhonda, thank you for your insight into the squirrel psyche.  We have a variety of cherry and regular tomatoes. Unfortunately, the humans and squirrels both agree that the sungold cherry tomatoes are the most flavorful. You are right - the thieves will leave the regular tomatoes alone if the sungolds are ripe and available.

 

I can see the squirrels’ favorite pine tree from my bed, so I watch the drama unfold even while resting …I love it. I spend a lot of time home alone these days, but do find that squirrel and plant gossip and photography does help pass the time tongue


Uriel
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/12/2007 8:25 PM (GMT -7)   
Hello. I have demyelinating disease. My Head really hurts. The Neurologist and orthopedic surgeons are speaking words to me that I dont understand. Apparently the nerves in my brain are dying and some parts of the brain are already dead. They`ve put me on heavy tranqiulizers and beta blockers. There is also evidence of Arterial Damage in my neck. I struggle with ocassional blindness in both eyes, as well as memory loss. I cant sleep. I have many tests that I have to go for with many doctors to see. they said that there are 18 scars that are in and on my brain as well as some open wounds that seem to be clotting. I honestly dont know why I am still alive. I feel sick. and the World is tilted to the left to anyone who reads this? can you tell me what to expect.

thanks.
 
                   Diagnosed with the disease March 2002   
 
P.S. I was a Trucker for 14 years. They took away my AZ and regular drivers licence.
I lost my Job as well and sometimes cant talk right, My words are slurred and my arms and legs will sometimes jolt out and shake for awhile. IS THIS NORMAL!!!!!!! OR IS IT GONNA GET WORSE?

Post Edited (Uriel) : 10/12/2007 9:35:21 PM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 10/12/2007 11:26 PM (GMT -7)   

Hi Uriel,

I am sorry you are having such a rough time.  Which demyelinating disease have you been diagnosed with?  What tests have your doctors ordered?  You need to have your doctors explain things until you understand them.  If you don't understand, just tell them you don't understand and ask them to explain it again.  Good luck.

Love and prayers,

 

 


Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Uriel
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/13/2007 10:40 AM (GMT -7)   
Adrenomyeloneuropathy. So far More MRI `s than i wish to count. Many beta blockers and  pain killers that totally paralyize me. They want to cut the top off my skull off so that they can some way miraclous way repair these dead aprts of the brain. they have me scheduled for a (pls excuse the spelling) a Little shaky today. They want to insert huge needle with a scope in the end of it up through my shoulder through the carauded artery as well as a spinal tap in the lower back and one under the skull.

Post Edited (Uriel) : 10/13/2007 11:48:49 AM (GMT-6)


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/3/2008 1:40 AM (GMT -7)   
I do not profess to know anymore than what I just read about your condition, 1 from your post, 2 from looking it up. It does say the legs will progress but the other measures to treat your condition are life saving? (id take comfort from that).


I didn't see anything that would explain to me why you'd have open ones still healing or trying to clot?

It did mention visual and hearing problems. Let me go grab that link again for you. I'm sorry that your going through this,
please try to obtain a copy of the doctor's reports that way you can see what they are saying since hearing them talk is too overwhelming for you to understand.
Hang in there and take a look at this. I'm not at all certain it explains all of it but it is what you have named in your post as the diagnosis, so maybe it can clear at least a few things up for you?




http://www.cmaj.ca/cgi/content/full/171/9/1073


(since i dont know how to activate a link, can you do this for me gretchen?)

thanks,
kiera

Post Edited By Moderator (Gretchen1) : 1/3/2008 8:43:34 AM (GMT-7)

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