I feel like my whole body is falling apart.

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Lee Umbower
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/5/2008 12:24 AM (GMT -7)   
Hi, My name is Lee :)
 
I was diagnosed with M.S. in June of 2007.
 
I really think I have had it for many years and doctors kept telling there was nothing wrong with me and I was just a hypochodriac.
 
In 2001 I started experiencing tinnitis so loud I could not hear over the buzz in my ears. That was at about the same time I started having problems in my wrists and back.  I was diagnosed by my family physican with carprel tunnel syndrom and musular strains from geratric nursing. I was sent to a specialist for the carprel tunnel who thought it was odd that the problems with my wrists were come and go. (pain, tingling in my hands and fingers, some loss of sesitivity, and swelling) I eventually just learned to live with the problems since no treatments short of surgury worked and I was not willing to go the surgical route.
 
During this time my memory slowly began circling the drain.  I found that I would put something down, only to forget where I put it and sometimes I would just stop mid-scentance because I simply forgot the word I was going to say.
 
Over the years the pain I would experiance would be so bad I couldn't move and my energy levels kept getting lower and lower.  I was then diagnosed with depression and place on a series of anti-depressants. None of which worked.
 
In August of 2005 I began getting more and more frustrated with my hands, I kept dropping things, and flinging stuff I was trying to hold onto unintentionally. In November of 2005 just after Thanksgiving I honestly thought I had had a small stroke.  Suddenly I could not walk right, my legs just would not work the way I wanted them too. Plus my ability to write was simply gone. I could grasp a pen, but as soon as I pressed it to paper my hand would temble like a leaf in the wind and I would have no control over moving it.  That's when my doctor finally sent me for my first MRI and found masses of lesions.  He referred me to a Neurologist who finally had time to see me in April. He sent me for several tests including an extreamly painful lumbar puncture and gave me the diagnosis of Multiple Sclerosis.
 
Now, I feel like my entire body has rebelled and it is falling apart.  I have constant pain, sometimes just a dull ache, sometimes so bad I am in tears. And it's not always the same thing that hurts, sometimes it's my joints, sometimes it's the muscles in my back, or my legs, sometimes it feels like someone is pouring molten metal inside my bones and there is nothing I can do to stop it. 
 
I have loss of sesitivty in my hands and feet and get come and go prickling sensations not only in my hands and feet but my legs from the knee down.
 
My memory is completly shot.  The pauses in speech I used to have a few times a week have progressed to a dozen times a day.  I have to keep a day planner with me at all times and write everything down and look at it regularly or I won't remember something I am supposed to do, an appointment, or something I was supposed to pick up.
 
My balance is a thing of the past too.  I can no longer do things I used to love like dance, bowl, or wear heels. (I used to be such a girlie girl)  I have to use a cane when I walk because if my balance goes and I have nothing to grab onto I will simply fall over.
 
My energy level is through the floor.  If I walk my kids to the bus stop (1 block round trip) I usually end up falling asleep on the couch shortly after because I an exausted and need a nap.
 
The loss of co-ordination in my hands never fully went away.  I have regained enough to write legibly sometimes, but my beautiful script is gone, and I am afraid to handle knives even when I try to cook because of tremor. I am terrified I will slice off a finger.
 
The headaches are impossible.  I never had Migraines until about 3 years ago, at first it was just a couple in a few months, then a couple a month, not it's 3 to 4 days a week I want to hurl from the pain in my head.
 
The tinnitis never went away either. Any time it is quiet all I hear is a constant buzz, sometimes so loud I can't go to sleep from the noise.  After all this time I should be used to it. Guess it shouldn't be an issue since I also have had a major issue with insomnia for about a month and a half now.
 
If that's not enough I have had an ever increasing issue with incontinence.  I actually *noticably* wet myself at a party this summer.  I was horrified, and in fact have not returned to that person's home since then. And my sex drive...well I don't have one anymore.
 
I have a feeling the way I feel now, beat up, worn out, and sick of freeling sick, is how I am supposed to feel at the age of 70......but I am only 29!
 
I think of my kids (boy 10 and girl 6) and all I wish I could do with them, and my *fairly* new husband (he married me 1 month after my diagnosis) and all I wish I could be for him, and I just want to cry.  A part of me want to give up, I feel like such a burden. Another part of me wants to beleive the diagnosis was a mistake and that I am just a hypochodriac. And another part of me wants to whoop this and get my life back...the one that was just starting when my body started going haywire.
 
Well, I think I've introduced myself :)  I haven't gotten the chance to talk to others with the same diagnosis and really want to know.......are all of my problems problems other people with M.S. suffer? Please tell me I am not alone.
 
 
 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/5/2008 7:04 AM (GMT -7)   
Hey Lee

Welcome to the board friend. I'm so sorry for all u'r struggling with! U do have quite a lot going on and tho i would like to say it won't get worse, i can't. BUT...there is the chance it will improve over time as well. Are u taking any meds? Symptom type meds or any of the MS CRAB's meds? If not please consider these. U may be able to get some relief from the symptoms such as fatigue (Provigil) or nerve pains (Neurontion). U'd also certainly need to consider using one of the CRAB's (Copaxone, Rebif, Avonex, Betaseron). Thanks so much for posting and telling us about u'rself. We're so glad u'r here and hope to get to know u better soon. Please feel free to ask any questions u may have or to just vent as needed. We'll be here to support u.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Lee Umbower
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/5/2008 10:23 AM (GMT -7)   
Hi and thank you :) 
 
I am not currently on any of the CRABs, I have my neurologist looking into the M.S. Vaccine that is still in clinical trials.  From what I have found 4 doses of this medicaion stops M.S. progression completely.  Plus, I have a fear of needleds that borders on a psychosis,  All of the medicatin I have looked at so far have been injections on a rgular basis (from weelk to daily) for the rest of my life.  Thank got I'm not diabetic because I would probably die from not using isulin.  I am also looking into serveral oral medicaions that are being tested, I will eventually be on something for the M.S. specifically.
 
Right now I am only on Imitrex for the mirgranes and MS Contin for the pain.  We ave tried alot of other medication including neurotnin and none o fthem have worked well, To be honest the MS Contin isn't working well either and I can't wait for my next appointment so they can get me off of it.
 
As far as Provigil I've never even hear of it, but I will mention it to my doctor :) If it can help me from feeling so worn out all the time I am willing to try it.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/5/2008 4:07 PM (GMT -7)   
Hey Jojosmom

Well i can certainly understand u'r desire not to use needles if u have a fear of them! I do hope u get to try the med and it's successful for u. I've not heard of this med. Do u have a name for it? I'd love to read more about it! I've not heard of MS Contin either. Is it for the pain with the migraines or ms?? Neurontin is not a good fix for some, but there are other meds that may be helpful to u. I'm sure others will be along soon to give u their suggestions. U might try listing the meds that are suggested here and discussing them all with ur' doc. There is no need for u to be in pain or suffering with these symptoms if there are reasonable meds to use for them. Take care friend and please let us know how u'r doing.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 11/5/2008 9:47 PM (GMT -7)   
Most of the reports of the MS vaccine are very exciting.  There are actually several in the making.  However, these treatments are literally years away.  Pretty much the earliest you will see these will about 7 years away.  Most neurologists recommend early treatment.  Are you sure you want to wait?

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 11/5/2008 10:06 PM (GMT -7)   

Hi Lee, and welcome to the board!

I’m so sorry you’re having such a rough time of it. It does sound like you have such a lot going on, and I really hope your neuro will continue to look into progression therapies for you, as well as some more effective symptom management. I’m sure the thought of daily or weekly injections must be really challenging with a needle phobia, and I wonder if you’ve considered Tysabri. Tysabri involves an IV which is probably not so good with the needle phobia, but it is only once a month and you do not have to inject yourself. I thought I’d just throw that one out there for the heck of it. Another thought is getting in on one of the clinical trials…but with most of those you run the risk of getting a placebo.

Rhonda gave you a great suggestion with the provigil. There are several other fatigue meds out there that have helped some people as well, including adderall, ritalin, and amantadine.

I am wondering if you’ve been to the urologist for the bladder issues, as they have testing and also treatments and management strategies (including oral medication) which can help some people. The same goes for the cognitive issues…have you undergone neuro-psych testing? These tests show what particular cognitive difficulties you are having, and then they can to help work on these issues, such as through rehab and also oral medication. None of these things are perfect of course, and I am likely repeating things you’ve already tried, but I thought I’d bring these things up. You are not alone here, there are many on this board who are struggling right along with you…hang in there, okay?

Sunny

 


Lee Umbower
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/6/2008 12:27 AM (GMT -7)   
Unfortunatly the only thing my Neurologist has suggested is Tysabri and I have had my doubts about trying it right now, I have seen that in the first sudies people developed a serios brain infection and a couple of them died from it. The thought of that scares me when my children are so young. I am collecting information on other treatments for both treatment of the MS and my symptoms. Thank you for all of the suggestions I will definatly be bringing them up at my next appointment.

For Rhondab

The medications I have come accross that are in testing phases are:

BHT-3009 more info can be found at http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=78

Oral Teriflunomide more info can be found at http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=68 and here http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=248

Oral Fingolimod more info can be found at http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=97 and here http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=53 ( this drug is in phase 3 studies and had a fatality reported about 6 months ago)

BG00012 more info can be found at http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=70

Laquinimod more info can be found at http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=251

As far as I have found in my research all of the medications above are still in one phase or another of clinical trials but only Fingolimod has had any fatalities so far. I am watching them as closly as I can and hope one of them shows to be really good.

By the way..MS Contin is a form of Morphine and I'm taking it to treat the daily pain I have from the MS. The Imitrex is for the Migranes.

Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 11/11/2008 11:19 AM (GMT -7)   
Lee,

Don't feel bad honey. I am only 31 and I am in the same boat. The past month has been the worse I've ever felt to date. My kids are 11, 6 and 4. AND they are all boys, so I have Boy Scouts and Cub Scouts and Football Meeting and Practice that I have to find the energy for. My husband and I have been married for 5 years, but we have been together for 13 now. I feel like a total burden because he didn't sign up for all of this when we met nor when we married because I didn't get a dx until June of 2007 ( 4yrs almost to the day that we married).
I have yet to find a combination of meds that help for more than just a few weeks. I have severe insomnia and can't take sleeping pills cuz they just don't work for me any more. I build a tolerance for medicine super fast, and I don't like to take pain pills for the simple fact of my past.
And to make matters worse, I don't have any insurance until Feburary. I have applied for Disablity because I can no longer work a full time job outside of my home.

Just keep telling yourself that you are NOT alone, and I hope that you can find something that helps you feel better soon.

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 


Lee Umbower
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/11/2008 6:21 PM (GMT -7)   
Thank you Heather :)

Some good news..I talked to my family physician since I don't see my neuro again until Dec, and he placed me on Adderol and Rozerm...When the adderol is working I feel so awake and alive....I don't think I relized how worn out and tired I felt until I took the Adderol and felt the difference. It works kind of strange...about 6 hours in the am and then only about 3 hours when I take a second one in the afternoon. The best I can figure is it works better in the AM because I had a full night's sleep (thank you Rozerm) the night before, and at noon time it does not work as long because there is more fatigue to combat. But at least I am getting some things done now..I acutally had the energy to do laundry from start to end instead of just washing them and needing a nap. :) I also have lost 10lbs since I started my new meds. (not arguing since I have a bit of a weight problem)

Another bit of good news..... Georgetown Hospital in Washington DC called me and I have an appointment for next Friday to see if my test results will be good enough to get me into their clinical trial of BG00012 :) It's an oral MS medication that is supposed to do the same thing as Copaxone and all them...I really hope I pass the test for their study, being on that will save me from listening to my neuro push shots on me when I hate needles.

I'll keep you all updated :)

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 11/12/2008 11:42 AM (GMT -7)   
Wow, that's great Lee! I'm so glad you're getting some relief from the sleep and fatigue issues! Yes, please do keep us posted on your progress, as well as your appt with Georgetown.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/12/2008 2:33 PM (GMT -7)   
Hey Lee

I second sunny's applause! It's so good u'r getting some relief! I wonder if u'r afternoon dose of Adderall could be increased? Maybe a half amt of the pill u'r currently taking? I"m not sure of the dosage levels and how they come. My daughter is on this med and it's a capsule that of course cannot be broken. Maybe there is a dosage prescribed that is in between?? I don't know if doubling that dosage would be a good idea tho just because of the sleep issues already present. Take care friend and let us know how that appt goes!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 11/12/2008 6:46 PM (GMT -7)   

Rhonda,

Don't forget that your daughter is on Adderall XR...(extended release).  Regular adderall is a tablet that can be broken.

 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 11/12/2008 7:41 PM (GMT -7)   
Lee,

Glad the adderall is helping. Let us know how the exam at Georgetown goes. I am looking for a new treatment/trial.
Barb/mystery reader
Diagnosed April 2007
Started betaseron --  May 2007 -- experienced allergic reactions after 2 weeks
Started copaxone -- June 2007 -- stopped after 4 1/2 months;experienced  severe 5 IPIR's
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 11/13/2008 10:17 PM (GMT -7)   
Lee,

That sounds promising. Hope everything works out for you. And I am so happy that you are getting some needed sleep.

Heather
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 11/14/2008 8:39 AM (GMT -7)   
i couldn't do daily injections due to injection-site reactions. finally broke down to trying ivig drips which my neuro recommended. have been on it for a couple of years now... had to get a port installed when veins gave out... it is an initial injection but you don't see the needle going in or out. the ivig dose has been adjusted to two days (about 4 hours each) twice a month. according to neuro and mri, the ivig has stopped ms progression. the injection at port works with some novocaine cream and novoderm patch on site for an hour before nurse arrives. pain equals maybe a hangnail. the ivig doesn't stop all flares, but i usually feel much better after getting it. i am lucky in that my insurance covers it, and i can get the drip at home. i suggest that you ask neuro about it, as well as checking out sites about it. also check your insurance, as it is very expensive without coverage. (i fought it for about 2 years but wanted to do something!) linda
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