Aa
WITS End!!!!!!!!
What's got you at yours?
My end came last month with the compounding pain associated with my neck. Took me waaay to long to do something about it, but I finally did.
Now, I can manage - not to say I don't still have to deal. But, you all know how it is when your plate gets just a "feather" lighter? Man, it's a break that is priceless.
What's got you at your absolute wits end? ...Spill!
Asking in the hopes we can all help each other make a step, where there is one, to lighten our load a bit.
If even as small as a vent about it... cuss if you want, lol
AND, don't forget to mention what lightened your load if you got a break. Mine was the epidurals.
(((Hugs)))
My end came last month with the compounding pain associated with my neck. Took me waaay to long to do something about it, but I finally did.
Now, I can manage - not to say I don't still have to deal. But, you all know how it is when your plate gets just a "feather" lighter? Man, it's a break that is priceless.
What's got you at your absolute wits end? ...Spill!
Asking in the hopes we can all help each other make a step, where there is one, to lighten our load a bit.
If even as small as a vent about it... cuss if you want, lol
AND, don't forget to mention what lightened your load if you got a break. Mine was the epidurals.
(((Hugs)))
They were such nice ladies - I was so thankful to see them! And Jack was so good with them - he is such a sweetie!
Reading everyones entries really does make one think.
Sidesteps - the cognitive function gets me sometimes too - I used to have the memory of an elephant now I see people at work that I do not see all that often and have a hard time remembering names. I write everything down.
Candy - the restrictions get to me as well - That coupled with fatigue make me rethink my day everyday - I always intend to do more than I do but then the old legs get in the way. Financial restrictions are a factor as well - This is not a cheao disease to combat.
Lu - so sorry that you had a relapse - and you went so long without one - but you of course handled it with your usual grace - you are amazing!
The best part about being at ones wits end is that we have each other to share it with - Imagine a world without the internet and social media and without each other! If there is an upside to having this horrible disease it is that I have found you all and that makes me smile everyday when I log in!
Have a wonderful day all!
Tracy
Reading everyones entries really does make one think.
Sidesteps - the cognitive function gets me sometimes too - I used to have the memory of an elephant now I see people at work that I do not see all that often and have a hard time remembering names. I write everything down.
Candy - the restrictions get to me as well - That coupled with fatigue make me rethink my day everyday - I always intend to do more than I do but then the old legs get in the way. Financial restrictions are a factor as well - This is not a cheao disease to combat.
Lu - so sorry that you had a relapse - and you went so long without one - but you of course handled it with your usual grace - you are amazing!
The best part about being at ones wits end is that we have each other to share it with - Imagine a world without the internet and social media and without each other! If there is an upside to having this horrible disease it is that I have found you all and that makes me smile everyday when I log in!
Have a wonderful day all!
Tracy
Jehovah Witnesses are kind and loving people...they always help anyone if all possible....Happy that you and your dog was able to get in out of the heat....
Oops! Darn iPad keyboard.
.......soaking in a tepid bath, massaging my left hand with hand lotion. These different techniques provide a temporary distraction to the painful sensations. On top of the discomfort I am getting more and more clumsy, constantly dropping things, breaking things, practically throwing objects when I mean to gently hand them over. I was almost in tears today breaking two coffee mugs and a wine glass! I know that's ridiculous and that people are dealing with much worse. It's pretty trivial really. Though it wasn't so much the broken objects themselves, (even though the mugs were both ones I've picked up on my travels, the only souvenirs I usually get for myself), it was the the d@mn frustration of not having total conrol over my limbs.
Some days it makes me want to scream. Most days I suck it up and carry on.
.......soaking in a tepid bath, massaging my left hand with hand lotion. These different techniques provide a temporary distraction to the painful sensations. On top of the discomfort I am getting more and more clumsy, constantly dropping things, breaking things, practically throwing objects when I mean to gently hand them over. I was almost in tears today breaking two coffee mugs and a wine glass! I know that's ridiculous and that people are dealing with much worse. It's pretty trivial really. Though it wasn't so much the broken objects themselves, (even though the mugs were both ones I've picked up on my travels, the only souvenirs I usually get for myself), it was the the d@mn frustration of not having total conrol over my limbs.
Some days it makes me want to scream. Most days I suck it up and carry on.
The paresthesia that I have on my left side from the tips of my fingers up to my elbow frequently has me at my wit's end. It started with a flare in 2007, remitted, returned in a subsequent flare in 2008, and is here to stay. Well over 4 years of relentless, 24/7 discomfort and clumsiness. I've tried a number of different meds with moderate to zero effectiveness. My current regimen includes gabapentin, noritriptyline and nabilone. I'm getting some relief but I feel like I should be getting more relief than I am considering the massive number of pills I swallow daily. My neuro recently switched me from amitriptyline to noritriptyline as they are very similar meds but slightly different side effect profiles. My prob with the former is urinary retention. I'm hoping the latter won't have the same effect on me. The nabilone (Cesamet) is synthetic THC and it doesnt seem to be making much difference though I'm tolerating it well. Maybe as a titrate to a higher dose it will be more effective. In the meantime I have a number of non-drug tricks: wrapping that limb in an Ace bandage, using a gel ice pac
COMMUNITY LEADER
Hey babe, its not actually been the vertigo, thats just the last issue on the list, the problem has been caused by one thing after the other. It started with my jaw pain, I seriously didn't want to go anywhere or do anything, day after day in pain took its toll. Eating was also a problem because i couldn't chew, and fatigue battered me before, during and long after my jaw settled but i could see the end coming when the pain stopped so all was moving in the right direction.
Though there really wasn't any block of time before I couldn't talk, communication was practically impossible through the stutter. There is no doubt my cognitive took a dive too, when that happened i couldn't say, only realised just how poor it was when it became hilariously bad.
lol I started feeling like my normal but everyone around me was getting sick with a winter bug, and even when it got me too, if not for the vertigo i still didnt feel all that sick. No big deal, just a sore throat, stuffy ears and nose, i didn't feel like i'd been hit by a mack truck, my fatigue was (almost) back to base line etc not really sick at all. Remember my mobility and balance is already shot, i fall and have for a while now. The bug is almost gone and the room hasn't spun for a couple of days, still a bit wonky but its probably safe to say the vertigo is caput, yeah!
Cognitively i feel more like me and i have since before the vertigo so i'm confident i could drive (though my family is freaked by the idea) but physically i'm not ready to go anywhere yet, i'm not totally nutts lol. I have to be stronger because my tremors are worse when i'm not strong, not to mention the way i walk is tiring too. I feel like i'm slowly moving forward but this is mentally one of the hardest times for me. My desire to do is so much stronger than my ability, and when I push too soon i typically do something stupid, and toast my self.
There isn't anything anyone can do, what if anything, can be done for any of that? The answer is realistically nothing much, so what can be done is more about management than anything else. It gets frustrating but i'll get there in the end, cause i usually do, i just need to be patient whilst i'm regaining strenth.
Cheers..........JJ
Though there really wasn't any block of time before I couldn't talk, communication was practically impossible through the stutter. There is no doubt my cognitive took a dive too, when that happened i couldn't say, only realised just how poor it was when it became hilariously bad.
lol I started feeling like my normal but everyone around me was getting sick with a winter bug, and even when it got me too, if not for the vertigo i still didnt feel all that sick. No big deal, just a sore throat, stuffy ears and nose, i didn't feel like i'd been hit by a mack truck, my fatigue was (almost) back to base line etc not really sick at all. Remember my mobility and balance is already shot, i fall and have for a while now. The bug is almost gone and the room hasn't spun for a couple of days, still a bit wonky but its probably safe to say the vertigo is caput, yeah!
Cognitively i feel more like me and i have since before the vertigo so i'm confident i could drive (though my family is freaked by the idea) but physically i'm not ready to go anywhere yet, i'm not totally nutts lol. I have to be stronger because my tremors are worse when i'm not strong, not to mention the way i walk is tiring too. I feel like i'm slowly moving forward but this is mentally one of the hardest times for me. My desire to do is so much stronger than my ability, and when I push too soon i typically do something stupid, and toast my self.
There isn't anything anyone can do, what if anything, can be done for any of that? The answer is realistically nothing much, so what can be done is more about management than anything else. It gets frustrating but i'll get there in the end, cause i usually do, i just need to be patient whilst i'm regaining strenth.
Cheers..........JJ
Side steps,
I feel you on the cognitive problems...my memory went out the window last term in school which was why I decided to take the summer off after grandpa died. Thought a break from extreme pressure was helpful.
I can't imagine losing a husband, having children, MS, and a demanding job. The only thing that I know of although I have no idea if there is any benefit is I play word games. My other grandfather has alzheimers (sp) the dr suggest games to not only him in the beginning but also encouraged family members to do the same. I had fallen off the wagon but am back on :).
Cheers
Belle
I feel you on the cognitive problems...my memory went out the window last term in school which was why I decided to take the summer off after grandpa died. Thought a break from extreme pressure was helpful.
I can't imagine losing a husband, having children, MS, and a demanding job. The only thing that I know of although I have no idea if there is any benefit is I play word games. My other grandfather has alzheimers (sp) the dr suggest games to not only him in the beginning but also encouraged family members to do the same. I had fallen off the wagon but am back on :).
Cheers
Belle
Thank you so much for your reply! I have been real down since yesterday. I ended up taking my avonex tonight on my own gut feeling about it. My case has been odd from the get go. What was said yesterday prompted me to look through some record from when my journey all started.....
Needless to say according to an ear clinic where I had 8 tests run that took over 8 hours revealed that I had either a lesion or broken bone that was causing my extreme vertigo and interrupting the communication between my eye and ear. In the MRI and cat scan they did there was nothing.
Noe I'm curious if this isn't the first time this has happened to me. The odd thing is...is that she kept saying nothing else could cause a pronounced lesion like I had in my thoracic..and is the culprit behind my numbness,pain, and sensory changes in my left arm and responsible for my banding pain.
Thank you soooooo much for the link! I was seriously feeling whacky again even though family an friends kept telling me they don't put just anyone on interferon. Anyways thanks again I love the support and information here it truly helps my anxiety with all of this medical uncertainty.
Cheers,
Belle
Needless to say according to an ear clinic where I had 8 tests run that took over 8 hours revealed that I had either a lesion or broken bone that was causing my extreme vertigo and interrupting the communication between my eye and ear. In the MRI and cat scan they did there was nothing.
Noe I'm curious if this isn't the first time this has happened to me. The odd thing is...is that she kept saying nothing else could cause a pronounced lesion like I had in my thoracic..and is the culprit behind my numbness,pain, and sensory changes in my left arm and responsible for my banding pain.
Thank you soooooo much for the link! I was seriously feeling whacky again even though family an friends kept telling me they don't put just anyone on interferon. Anyways thanks again I love the support and information here it truly helps my anxiety with all of this medical uncertainty.
Cheers,
Belle
I know this is related to not feeling well but so far, I've been told my endurance is high on physical issues. (To make a joke, it could be because I have a significant amount of decreased sensation. ;)
My wits end moments tend to be related to my cognitive function. I am in an industry that requires my knowledge and professionalism. My kids need me to remember things... and honestly, I would be scared what the Neuro-Psych examination revealed. :(
I have had babies, lost a husband and now have MS. All these experiences seem to significantly reduce your mental capacity. Each time it REALLY scared me.
My wits end moments tend to be related to my cognitive function. I am in an industry that requires my knowledge and professionalism. My kids need me to remember things... and honestly, I would be scared what the Neuro-Psych examination revealed. :(
I have had babies, lost a husband and now have MS. All these experiences seem to significantly reduce your mental capacity. Each time it REALLY scared me.
Hi LuLu,
I don't live in remote Australia. I used to live on a sheep station (ranch) outside Charleville in western Queensland but I have lived in South East queensland for many years now.
I live half way between our capital (Brisbane) and the Gold Coast. It's basically urban and suburban the entire way.
My problem is that while it's only a 5-7 minute taxi ride to a dental clinic, I have no way of getting from where the taxi would drop me off, down a path, up a ramp and into the clinic. I haven't got the arm strength to push myself and no one to do it for me. I have got 2 friends who would do it if I asked them but they both work full time and I don't want to ask them to take time off work. My father (84) has done this for me until a few months ago but he isn't well and needs spinal surgery.
I BADLY need a haircut too and am feeling more and more unkempt. I'm getting to the stage where I'm almost too embarrassed to be seen in public anyhow. I think I'm becoming a bit agoraphobic.
I empathize and sympathize with supermum-ms. Besides medical appointments and a friend taking me out to a club last Saturday night, I hadn't been out of the house in 10 or 11 weeks.
The scary part is how quickly this life of isolation becomes normal.
Regards
Chirley
I don't live in remote Australia. I used to live on a sheep station (ranch) outside Charleville in western Queensland but I have lived in South East queensland for many years now.
I live half way between our capital (Brisbane) and the Gold Coast. It's basically urban and suburban the entire way.
My problem is that while it's only a 5-7 minute taxi ride to a dental clinic, I have no way of getting from where the taxi would drop me off, down a path, up a ramp and into the clinic. I haven't got the arm strength to push myself and no one to do it for me. I have got 2 friends who would do it if I asked them but they both work full time and I don't want to ask them to take time off work. My father (84) has done this for me until a few months ago but he isn't well and needs spinal surgery.
I BADLY need a haircut too and am feeling more and more unkempt. I'm getting to the stage where I'm almost too embarrassed to be seen in public anyhow. I think I'm becoming a bit agoraphobic.
I empathize and sympathize with supermum-ms. Besides medical appointments and a friend taking me out to a club last Saturday night, I hadn't been out of the house in 10 or 11 weeks.
The scary part is how quickly this life of isolation becomes normal.
Regards
Chirley
ATTENTION BELLE!!!
You REALLY need to take a look at the Health Page titled,
Lesions - Can they Disappear? A Hypothetical Case Overview.
Other people with MS have experienced the same thing
AND
We have a Health Page that explains the how and why.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions---Can-they-Disappear-A-Hypothetical-Case-Overview/show/566?cid=36
Here’s my own story. In 1990, my MRI revealed several lesions. The ONE the radiologist reported on was located in the medulla. A neuro or two told me “not to worry” because I was sitting there talking to him so the lesion “couldn’t be there”. OoooKay. I was returning to function so I didn’t worry about it.
With no diagnosis and no worries there was no reason to have another brain MRI. I disregarded symptoms that came and went over the years. I blamed myself when I never really regained my previous level of healthfulness.
A symptom spike with pronounced drama prompted a new MRI in 2009. That’s when I found out multiple lesions had actually been visible 19 years ago - and still were - EXCEPT for the radiologist’s favorite. That one - the one in the medulla - was GONE! DISAPPEARED! OoooKay, again. Except this time I’m diagnosed with MS. (So is it time to worry?)
Too bad this illusive lesion causes some of the most life altering symptoms of my MS. Lesion Gone-But-Not-Forgotten, I guess. In fact, just recently it was named the likeliest suspect responsible for my periodically very low heart rate. The cardiologist and my pacemaker are my new BFFs.
Sooooo Belle,
Quix describes my circumstance AND YOURS perfectly in her Health Page.
I have written this to encourage you to RETURN to using your DMD immediately and to stick with it until (and unless!) some other diagnosis PROVES itself to you and your neuro.
You stated you have new symptoms evolving. Please don’t miss the opportunity to reduce their further development if you can. And the BANDING pain? That is a classic symptom of thoracic lesions. No doubt the areas seen on your earlier MRI continue to cause symptoms even though your body has rendered them invisible.
I suggest you do yourself and your MSologist’s knotted stomach a huge favor. Read Doc Quixotic’s article and print off a copy for Belle’s doc when you’re finished. People of your city who are diagnosed with MS far into the future will benefit from what you and your doc learn as a team now.
Good luck bringing this particular frustration to an end.
You REALLY need to take a look at the Health Page titled,
Lesions - Can they Disappear? A Hypothetical Case Overview.
Other people with MS have experienced the same thing
AND
We have a Health Page that explains the how and why.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions---Can-they-Disappear-A-Hypothetical-Case-Overview/show/566?cid=36
Here’s my own story. In 1990, my MRI revealed several lesions. The ONE the radiologist reported on was located in the medulla. A neuro or two told me “not to worry” because I was sitting there talking to him so the lesion “couldn’t be there”. OoooKay. I was returning to function so I didn’t worry about it.
With no diagnosis and no worries there was no reason to have another brain MRI. I disregarded symptoms that came and went over the years. I blamed myself when I never really regained my previous level of healthfulness.
A symptom spike with pronounced drama prompted a new MRI in 2009. That’s when I found out multiple lesions had actually been visible 19 years ago - and still were - EXCEPT for the radiologist’s favorite. That one - the one in the medulla - was GONE! DISAPPEARED! OoooKay, again. Except this time I’m diagnosed with MS. (So is it time to worry?)
Too bad this illusive lesion causes some of the most life altering symptoms of my MS. Lesion Gone-But-Not-Forgotten, I guess. In fact, just recently it was named the likeliest suspect responsible for my periodically very low heart rate. The cardiologist and my pacemaker are my new BFFs.
Sooooo Belle,
Quix describes my circumstance AND YOURS perfectly in her Health Page.
I have written this to encourage you to RETURN to using your DMD immediately and to stick with it until (and unless!) some other diagnosis PROVES itself to you and your neuro.
You stated you have new symptoms evolving. Please don’t miss the opportunity to reduce their further development if you can. And the BANDING pain? That is a classic symptom of thoracic lesions. No doubt the areas seen on your earlier MRI continue to cause symptoms even though your body has rendered them invisible.
I suggest you do yourself and your MSologist’s knotted stomach a huge favor. Read Doc Quixotic’s article and print off a copy for Belle’s doc when you’re finished. People of your city who are diagnosed with MS far into the future will benefit from what you and your doc learn as a team now.
Good luck bringing this particular frustration to an end.
you do a good job of going on with us here and I had no idea the vertigo was that bad. A good checkup with the doctor is in order, and you probably know that.
hugs, L
hugs, L
COMMUNITY LEADER
Hmm my wits end is secondary, i've not left the house for a long time, its got to be months and that actually bothers me. It bothers me that i dont really know how long its been, but truthfully its probably better if i dont try to work it out. Time has just flowed along with one day bleeding into the next, and i'm stuck here.
If i could, i would run!
If i could I would drive my beautiful car and visit everyone!
If I could i'd even do the shopping lol
If I could I would stop shaking because it exhausts me!
A few weeks ago, before the vertigo hit, i was chomping at the bit to get out. I was only planning on popping around to the local shops, nothing big, lol i'm sure i could manage 30 minutes on my own without a disaster. Why this simply normal thing is so hard, is just a pain with no easy solution.
I miss my freedom and my patience is wearing thin, whilst i'm waiting for a break and things to click back into place lol patience!
Hugs.........JJ
If i could, i would run!
If i could I would drive my beautiful car and visit everyone!
If I could i'd even do the shopping lol
If I could I would stop shaking because it exhausts me!
A few weeks ago, before the vertigo hit, i was chomping at the bit to get out. I was only planning on popping around to the local shops, nothing big, lol i'm sure i could manage 30 minutes on my own without a disaster. Why this simply normal thing is so hard, is just a pain with no easy solution.
I miss my freedom and my patience is wearing thin, whilst i'm waiting for a break and things to click back into place lol patience!
Hugs.........JJ
Oh my, that vomiting and spasms doesn't sound good but that toothache sounds even worse. I'm guessing that you live in a remote area of Australia? Are there any social services folks who can help you with transportation? I wish I could give you some home remedy for that tooth. If it is infected, it could be setting off all sorts of problems with the MS.
let us know if you can get some help -
very gentle hugs,
Lulu
let us know if you can get some help -
very gentle hugs,
Lulu
Toothache with no way of getting to a dentist. Last straw. I've had it for two weeks now. At first I thought it was the TN but the tooth (left upper molar) is tender to touch so I have to assume toothache.
Add that to the esophageal spasms and vomiting this morning and I've had it!
I don't want to play this game anymore, I want my life back!
Bye
Chirley
Add that to the esophageal spasms and vomiting this morning and I've had it!
I don't want to play this game anymore, I want my life back!
Bye
Chirley
Shell, I´m sorry your neck has been so very bad, and glad that you´re better, hope that it will keep getting better!
And I´m sorry about all of you what you have gone through. I´m ok comparing to all of you, so I guess I have not met my "wits end" yet (hope I never will).
Wishing you all, all the best,
Dagun
And I´m sorry about all of you what you have gone through. I´m ok comparing to all of you, so I guess I have not met my "wits end" yet (hope I never will).
Wishing you all, all the best,
Dagun
Hey all!
I too am having one of those extremely frustrating moments...
Yesterday I went to my MS specialist whom has knots in her stomach over my case...never had a doc say that to me before.
Apparently my spinal lesions have disappeared over three scans. The first stated that with the contrast the lesion at T4 lit up...the second scan months later described a demylation plaque at T4...and the third scan said nothing...
She doesn't know exactly what to think I asked her what else would cause a lesion and spots like I had on my first MRI and she said MS is the only thing that it could be...
She has decided to re-run a bunch of tests to rule out causes of new symptoms I've been experiencing. She also gave me the option to stop the therapy to wait for results. So I decided to, but she said I could restart if I started feeling crappy.
She hasn't taken back my diagnosis...and I don't see her again til November. She started me on gabepentine for this banding pain that i have.
Anyways haha I don't know what is up and what is down! Hope all of you are making it through your moments and hurdles!
Belle
I too am having one of those extremely frustrating moments...
Yesterday I went to my MS specialist whom has knots in her stomach over my case...never had a doc say that to me before.
Apparently my spinal lesions have disappeared over three scans. The first stated that with the contrast the lesion at T4 lit up...the second scan months later described a demylation plaque at T4...and the third scan said nothing...
She doesn't know exactly what to think I asked her what else would cause a lesion and spots like I had on my first MRI and she said MS is the only thing that it could be...
She has decided to re-run a bunch of tests to rule out causes of new symptoms I've been experiencing. She also gave me the option to stop the therapy to wait for results. So I decided to, but she said I could restart if I started feeling crappy.
She hasn't taken back my diagnosis...and I don't see her again til November. She started me on gabepentine for this banding pain that i have.
Anyways haha I don't know what is up and what is down! Hope all of you are making it through your moments and hurdles!
Belle
To save typing but hopefully not minimize your sufferings, I second what Lu posted.
Lu- I'm sorry you have had your first relapse...we can all commiserate with that.
With best wishes and encouraging news to you all,
Ren
Lu- I'm sorry you have had your first relapse...we can all commiserate with that.
With best wishes and encouraging news to you all,
Ren
My wit's end moment -
Since my dx in 2008, I have been doing fairly well. Yes, I have the nuisance of heat fatigue and learned to work around it. Yes, my bladder tried to take control of my life, but with the help of an excellent urogyno and the miracle of modern chemistry, I have wrestled that control back to my side. And my gait is a bit off, but there are a lot of people out there who walk a bit different and I could just blend in.
What hit me with this relapse - my first major one since my diagnosis - is how capricious MS really is. It's not that I don't know that already, but living it is a different thing. And then, while figuring that out, it also comes to me that no matter how talented or knowledgeable my medical team is, they can't help with this, either. That has to frustrate them almost as it does to me.
A while back I asked my neuro how he deals emotionally working with a disease that has no known cure and his answer stuck with me - he said he always reminds himself that we have MS before we walk through his door.
Since my dx in 2008, I have been doing fairly well. Yes, I have the nuisance of heat fatigue and learned to work around it. Yes, my bladder tried to take control of my life, but with the help of an excellent urogyno and the miracle of modern chemistry, I have wrestled that control back to my side. And my gait is a bit off, but there are a lot of people out there who walk a bit different and I could just blend in.
What hit me with this relapse - my first major one since my diagnosis - is how capricious MS really is. It's not that I don't know that already, but living it is a different thing. And then, while figuring that out, it also comes to me that no matter how talented or knowledgeable my medical team is, they can't help with this, either. That has to frustrate them almost as it does to me.
A while back I asked my neuro how he deals emotionally working with a disease that has no known cure and his answer stuck with me - he said he always reminds himself that we have MS before we walk through his door.
Jen,
I am so glad that there was help for you - it is a terrible feeling to realize a major problem like that and pondering a solution. Thanks for sharing this because it proves again that there are good people every where willing to help.
Jensequitir, So glad you got the answers, sort of! It sounds like a trade-off with the Baclofen.
Debgen, I can sure understand that frustration. Can we assume that your diagnosis and treatment finally came because you were doing worse then and it's not a direct correlation to getting treatment.
Ren, I almost picture you splinted from top to bottom. I feel so bad that these injuries continue. I want you to catch a break and I don't mean the literal one.
Candy, I am so sorry to hear about your sister. It is difficult enough to hear that type of news, but to be so far removed is even worse. Maybe when she is feeling up to it, she can come visit you in your lovely town of Victoria?
I am so glad that there was help for you - it is a terrible feeling to realize a major problem like that and pondering a solution. Thanks for sharing this because it proves again that there are good people every where willing to help.
Jensequitir, So glad you got the answers, sort of! It sounds like a trade-off with the Baclofen.
Debgen, I can sure understand that frustration. Can we assume that your diagnosis and treatment finally came because you were doing worse then and it's not a direct correlation to getting treatment.
Ren, I almost picture you splinted from top to bottom. I feel so bad that these injuries continue. I want you to catch a break and I don't mean the literal one.
Candy, I am so sorry to hear about your sister. It is difficult enough to hear that type of news, but to be so far removed is even worse. Maybe when she is feeling up to it, she can come visit you in your lovely town of Victoria?
I so agree with Rendean, the restrictions on us as people, not just people with MS. I have had a sad story, my sister that had her breast removed at Christmas last year due to cancer, has now been told that she has 2 cancerous moles on her, one on her ankle bone, and one on her forehead, and there is one more on her thigh, that they don't know about you. They will be removed on the 10 of August.
I so wanted to do a road trip and go and see her. She is in Worland Wyoming, and I'm in Victoria Canada, and it is just to much for me to drive that far. The money is another issue, and I hate to say that money is the issue, but truly it is. I just don't get enough on my disability to save any, and my hubby still isn't working either, and fighting Workers Comp.
So, my wits end is just that. I hate this, and I wish we could all just snap our fingers and it would all go away. But, to be real, that can't happen.
So, here I sit, telling you all, as I look out at the sunshine and the ocean, and I'm thankful for what I have TODAY, and I'm not going to worry about tomorrow, my anxiety gets to high if I plan muc more than that.
Hope you all are seeing the sunshine in your lives, I sure have it in mine....
((HUGS)) to all,
Candy
I so wanted to do a road trip and go and see her. She is in Worland Wyoming, and I'm in Victoria Canada, and it is just to much for me to drive that far. The money is another issue, and I hate to say that money is the issue, but truly it is. I just don't get enough on my disability to save any, and my hubby still isn't working either, and fighting Workers Comp.
So, my wits end is just that. I hate this, and I wish we could all just snap our fingers and it would all go away. But, to be real, that can't happen.
So, here I sit, telling you all, as I look out at the sunshine and the ocean, and I'm thankful for what I have TODAY, and I'm not going to worry about tomorrow, my anxiety gets to high if I plan muc more than that.
Hope you all are seeing the sunshine in your lives, I sure have it in mine....
((HUGS)) to all,
Candy
What has gotten me to my wit's end is my current restrained lifestyle. I have a wrist splint on my left arm due to atrophy, a splint on my right hand and thumb due to tendonitis post wrist bone fracture , pulled muscle on top of left knee sprain that hasn't healed...knee brace there and knee brace on right knee since it is doing the work of two knees.
The hand splints are why you haven't seen much of me in a while as it is extremely slow and painful to type, not to mention the many typos. I still read about you all, I just cannot respond to all that I like. when my hands say that's enough I have to stop or pay the price tomorrow.
The trigeminal face pain that cannot be treated properly due to drug allergies is the icing on the cake. done . spilled the worst of it.
Ren
The hand splints are why you haven't seen much of me in a while as it is extremely slow and painful to type, not to mention the many typos. I still read about you all, I just cannot respond to all that I like. when my hands say that's enough I have to stop or pay the price tomorrow.
The trigeminal face pain that cannot be treated properly due to drug allergies is the icing on the cake. done . spilled the worst of it.
Ren
I have some negatives, and some positives!
Bad news is that the thyroid biopsy on my right side is too ambiguous, and they'll need to do another one. Good news is that the rest came back as simple nodules, no problem.
Good news is that I've successfully titrated off Baclofen, and my quality of life isn't much changed - in some ways, it's better. I get to stay up longer. Bad news is that I now have constant lower back pain, and pain in my hip flexor, and some pain in my arms. So I guess I know what the baclofen was doing! Good news is that most of the pain can be relieved with stretching, so I've been doing a lot of that.
Good news is that my recent tests came back negative for the lupus anticoagulant, which is great. Bad news is that my hematology doctor says this is something that waxes and wanes - I might come back to positive in the future. I certainly had it in 2010, when the first tests were done. Good news is that it seems to come with angioedema of my face - any sort of injury, such as a bitten tongue, causes my face to swell up alarmingly. So perhaps if I start getting that, then I'll know to be careful.
Bad news is that the thyroid biopsy on my right side is too ambiguous, and they'll need to do another one. Good news is that the rest came back as simple nodules, no problem.
Good news is that I've successfully titrated off Baclofen, and my quality of life isn't much changed - in some ways, it's better. I get to stay up longer. Bad news is that I now have constant lower back pain, and pain in my hip flexor, and some pain in my arms. So I guess I know what the baclofen was doing! Good news is that most of the pain can be relieved with stretching, so I've been doing a lot of that.
Good news is that my recent tests came back negative for the lupus anticoagulant, which is great. Bad news is that my hematology doctor says this is something that waxes and wanes - I might come back to positive in the future. I certainly had it in 2010, when the first tests were done. Good news is that it seems to come with angioedema of my face - any sort of injury, such as a bitten tongue, causes my face to swell up alarmingly. So perhaps if I start getting that, then I'll know to be careful.
Hi Shell!
To make my biggest gripe concise, I am frustrated, tired and scared of my regression. I remained at the same level for 25 years, then I was finally dx with MS and given a DMD: Copaxone, and Baclafen for my increasing spasticity. Since then I have become truly disabled. I need to walk with a WalkAide and a cane or a Rollator on bad days. I am crying just letting this out because I tend to put up a very positive front.
Excersise, PT and most of all a very supportive family and a great group of supportive friends who keep me laughing lighten my load.
Sorry this post from me is a real downer :(
I truly hope that you get domed relief soon!!!
(((hugs)))
Deb
To make my biggest gripe concise, I am frustrated, tired and scared of my regression. I remained at the same level for 25 years, then I was finally dx with MS and given a DMD: Copaxone, and Baclafen for my increasing spasticity. Since then I have become truly disabled. I need to walk with a WalkAide and a cane or a Rollator on bad days. I am crying just letting this out because I tend to put up a very positive front.
Excersise, PT and most of all a very supportive family and a great group of supportive friends who keep me laughing lighten my load.
Sorry this post from me is a real downer :(
I truly hope that you get domed relief soon!!!
(((hugs)))
Deb
Jen, the Groupon and living Social coupon deals on massages are almost always great savings and an excellent way to help yourself. I always have trouble telling people about massage because they think it is an indulgence so I always call it massage therapy so it adds that medical sound to it. I have gone regularly since May 2008 to the same person and I credit her with keeping me upright. Massage therapy is highly recommended for people with MS.
Acupuncture is another therapy I use often and find it very helpful. Some people with MS can't do it because it over stimulates their nervous system. I haven't had that problem.
Acupuncture is another therapy I use often and find it very helpful. Some people with MS can't do it because it over stimulates their nervous system. I haven't had that problem.
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