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Unread 11-16-2012, 06:29 PM   #41
agate
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Thanks, Sally--sinus problems are probably the reason. I take Claritin/loratadine every day but maybe I should add Sudafed Plus. I've tried that sometimes, and it's the same problem you describe--the dry mouth becomes worse.

My nose is congested in the winter months, come to think of it. And just now I sound like a frog.
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Unread 11-17-2012, 11:19 AM   #42
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Still having severe headaches and hand/arm numbness & spasms; so am undergoing tests to figure out why there may be an increased intracranial pressure and if that along with the Sx are due to MS or ???

With love, Erika
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Unread 11-17-2012, 12:25 PM   #43
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I'm so sorry Erika. This has gone on long enough now. I want you to grab your Doc by the coller or throat and demand relief...ASAP.

Know that I and others are think of and praying for you. Feel better.

Oh and let us know what your Doc says, after you let him up for air.
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Unread 11-18-2012, 01:08 AM   #44
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In all fairness, it isn't the doc's fault.

My neuro doesn't want to see me until after the MRI work-up he ordered back in May is done, but our health care system in Canada is so backed up I won't have that until mid-December.
The next opportunity to see the neuro will be in February as he's busy as head of the provincial MS Research and Treatment Clinic and doesn't come to my area in the middle of winter. The frequent snowy weather during that time often throws travel plans for doctors and patients alike into chaos.

I have avoided going in to my PCP because he is away for 6 weeks and the thought of going through history, examinations etc with someone new was exhausting in itself .

Even with my regular PCP things usually end up with him suggesting a trial of meds and I stopped being that sort of a Guinea pig many years ago; preferring to wait until there is a definitive diagnosis. There have been too many experiences with negative side effects (some requiring hospitalization), many of the meds have had on the thyroid, liver and/or regional enteritis to not use an abundance of caution in that regard.
Thus we're trying to figure out what is going on before trying anything; but it's turning out to be a slow process.

At least we have come to a couple of conclusions...
we've decided that if this body was a car it would be an Edsel (lemon); and that its driver's healthy sense of humour is intact .

Thanks for your prayers and well wishes.
Will keep you posted.

With love, Erika
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Unread 11-18-2012, 12:48 PM   #45
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Well then I'll just keep praying and wishing good things for you until your Doc takes charge, Erika.

Agate, hows the jaw? Find any relief?

Tom, How is the Pain Med Trial going? Any relief?

Mariel, Kajun, EricP, Laura, Newsmom, New2net, doydie, OffinDistance, Kitty, Jappy, Nursenancy, Kicker, Lynn, Debbie, Shady??? Hugs for you all.

Sally is a little lonely but physically dandy right now.
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Unread 11-18-2012, 01:19 PM   #46
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Thanks for asking, Sally. I'm trying to keep remembering to keep my mouth shut. Mind over matter.

I'm checking on it more often and when I find it's dropped open, I shut it and concentrate on keeping it shut. Not easy to do when it wants to drop open.

This may be just a nervous habit caused by tension, I'm thinking.

Sally, that's good news that you're physically dandy right now! MS is a lonely disorder, isn't it? People don't understand our limitations. Or they don't want to, maybe.
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Unread 11-20-2012, 04:20 PM   #47
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Been a rough time lately...
I finally made arrangements for PT, and had evaluation today. Lots of problems with posture, discs, scoliosis, dragging foot, stiffness, etc. Gave me a bunch of exercises and told me to get into the water and do a workout instead of weight training-feels it is too much for my spastic muscles at this point, and that the water will be beneficial. Sounds like my neuro talking for the past year
I am also in a full-tilt depressive episode, so DH and I are trying to find a therapist after we figure out the provider from his employer (they're always changing). I hate going down that road again, but I am overwhelmed by life right now and am near the edge; with 2 grandbabies on the way I want to WANT to be around to meet them, know what I mean?
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Last edited by Debbie D; 11-20-2012 at 04:21 PM. Reason: typo
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Unread 11-20-2012, 06:52 PM   #48
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Bless your heart Debbie. This carppy disease has no concience. It strikes when we are down, pushing us down even further..

I hope your Doc can find the magic AD that is just for you and brings you back to some semblance or normalcy.

Most of us have been where you are now. I thank God that we have all the different ADs now. I have had to utilize a few, in the last 20 years of MS depression, as they worked then wore off. I'm good now but for how long?

Feel better soon.
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Pic taken by Son n Dil-Virg, Oct 4, 2014.

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Unread 11-21-2012, 02:56 PM   #49
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So far so good on the diagnostic front; in that at least the headaches are likely not due to MS. The hand/arm issues probably are another bout of partial transverse myelitis though and this time it is likely happening in the neck rather than in the mid back. No worries, the symptoms are comparatively mild to what I've experienced before with TM and if that is the cause, things should come around within another month or so.

All that has shown up so far is a slight change (swelling) in the optic disc of one eye and a few new neuro deficits; so the tentative Dx is idiopathic intracranial hypertension.
What does that mean I asked a physician friend and she said that "It means that the doctor is an idiot and the patient is pathetic due to an increase of CSF pressure in the head" .

Will be having spinal x-rays on Monday to see if there is a problem with the spine of the neck itself and there very well may be because I had a very bad forward fall into a tree about six weeks ago (the stupid legs gave out while I was picking up windfall apples). I banged my head quite badly but at the time I had no symptoms other than a large goose egg on the top of the noggin, so didn't think any more about it.
Strange that the headaches might be related to an injury that happened so long ago, but the doctor feels that there may have been a concussion and/or a spinal compression in the neck .

He's suggested a high dose of Ibuprofen to decrease the inflammation, along with some antacids to deal with the intestinal irritation that it might cause. We'll keep an eye on liver function and digestive function in the meantime as those are concerns in my case.
Thankfully the Ibuprofen is decreasing the headache as well as the numbness & pain in the hands/arms so there is light at the end of the tunnel...and it isn't the train .

I'm feeling so much better about all of these recent symptoms, now that I have some answers that indicate that these too will pass.

Thanks so much for all of your well wishes and prayers.
It really means so much to have friends like you to confide in and who truly understand what we go through when things like these show up .

With love, Erika

Last edited by Erika; 11-21-2012 at 02:57 PM. Reason: type o hands are still not working very well
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Unread 11-25-2012, 08:09 PM   #50
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It's been some time since I've posted, and it hasn't been a very "good" time. I've been in the hospital three times since mid-September with those famous MS complications. All three times were basically because of increased weakness in my legs. In the past, I've been able to stand, pivot, transfer and back into my chair. Now the bathroom has become my nemesis......not being able to get up from the toilet and back to chair.

First time when my chair's footrest assembly was broken, I'd also forgotten my phone, couldn't get back into my chair and was stuck in the bathroom from early Friday evening until about 4:30 pm Sunday afternoon. My daughter's son had a "midget" football game against the local team, so we'd made arrangements for her to stop in for a visit. Thank heaven my garage door opener worked from one end of the house to the other to let them in....and....what a sight for sore eyes....and sore butt from sitting on the toilet lid all that time.

Bathroom was the problem the next time too since I was afraid to use it not being able to get up alone and unfortunately had a mess. This miserable disease just continues to chip away at our dignity and well-being.

This last time, the weakness was "all over". Turns out I must be bleeding somewhere and had lost half my body's blood supply. Had to have three transfusions.........wow, I sure warmed up!!!! Now I'm off the coumadin and supposed to eliminate the Aleve, but it's the only thing that even begins to take the edge off the never-ending pain.

A catheter was left in this last time which is a blessing for me since I'm unable to tell when I have to "go". I'm also on lasix which is helping with my legs swelling. Having some problems with the "other department" and am praying it's only temporary. I'm working with a different Home Health Agency this time and they seem more efficient than the last two. At the moment an aide comes in twice a week but we're working on one coming every day just for a couple hours to help me get up, dressed, bathed and going for the day. Doing that myself takes hours and uses up all my energy so I'm wiped out for the rest of the day. A lymphedema specialist will be treating my legs also.

My friend/helper took my little dog to her house all three times. I was so thankful to have a place for "Tasha" to go where she already knows the people and feels comfortable. Sally.......I can feel your pain in having to rehome "Pal". But I also know how tough it can be taking care of them. Tasha was never completely housebroken since I got her when she was two years old, so I'm always using my grabber with a tissue between the "tongs" to pick up her presents. Just glad she isn't a German Shepherd!!! My friends actually kept her at their house a few extra days after I came home from the hospital. It's those simple, everyday things we normally take for granted, that are so frustrating not to be able to do anymore or with great difficulty.

It seems I'm really being tested right now and being forced to make some changes since I still live alone. It's really hard asking for help, but I'm learning. If it means I can continue living in my home....alone....it's worth it. Guess I'm not doing the greatest right now, but I've survived 36 years of living with this beast and don't plan on giving up any time soon!

Tom..........I have a Phantom 600. Bought it gently used with 11 miles on the odometer and now have 206, all in the house. Every section moves, gel cushion for the seat, $7,000 out of pocket but new would have been around $26,000!!!! Yes, it's really fast which I like. Was always known as a "leadfoot" when I could still drive.! That comes from learning to drive in New Jersey where it's "GO" or be run over!!!

Thank you, my friends, who read through this long post. It's sure nice visiting with others who understand. Take care everyone.....
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