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335728 tn?1331414412

Back from Rheumy...

Well I don't have Fibromyalgia...they said I have to have 11 points out of 15 or 16 to have Fibromyalgia and I have 6.  So Fibro is out thank goodness!

She said that my bursae on the outside of my thighs are very tender which could be a sign of bursitis but personally I doubt it because when I read up on bursitis the pain would be in a joint...my pain is in my WHOLE leg.  

She said that I may have a serious vitamin D deficiency which has never been brought up with me before and is testing me for that along with a myriad of other things as I was warned she would do.  I am on Vitamin D supplements as well as Calcium supplements in the meantime.

She is sending me for a bone density test as well.  Apparently when you are on steroids for any length of time you should have a bone density test...so I wonder why this wasn't ordered by either Neuro or my g.p.?  hmmmm

So I went for the blood tests and at the third vial of blood..BAM...down I went!  Apparently when the rheumy checked my blood pressure it was fine but it apparently dropped like a brick in the middle of my blood letting after only 3 vials.  So they had me lie down for the other 7 vials and I made it through.  It's strange that this has only happened to me since I started to get sick last February and every time since I have either passed out or came close to it.  hmmmm

My mother says that I should have my blood pressure tested on my ankle and that if it isn't the same as on my arm that would show that the blood isn't circulating properly.  I have noticed lately that my bedsheets are all pilling on my side of the bed because I guess my feet don't stop moving at night...I know during the day when the pain in my legs is bad I am always moving my feet around...it doesn't help the pain so I don't know why but who knows...maybe there is some connection.

As far as the nerve pain (burning in shin and thigh) (lightening bolts in both feet) she stated that this sounds to her like it would be related to my MS.  However, she stated that my neuro is the specialist and she should know if this is active MS or not. BOOOOO!!!  Guess what...I am no further ahead than I was this morning and you know what else?  I really am not that surprised.  The rheumy said to keep trying the Elavil for at least 6 weeks and if it doesn't improve then seek out something else.  I also have Osteo starting in my hands and since I can't take anti-inflammatories she said that I will have to live with the pain until my knuckles develop hard masses and then the pain will subside when I am around 60...wow, only 15 years of waking up in excrutiating pain...yahoo!!  She said to soak my hands in warm water every a.m. and squeeze a rubber ball to try to work out the kinks.  

SO...I have my bone density on May 6th and my next appt. with the rheumy on June 4th so I shall wait again for a better day I guess...I shouldn't be surprised I suppose...I didn't have my hopes up so they wouldn't be dashed but I am still a little down.  I will wait to hear about all the blood test results and if they are negative I am going to have to go to Jamaica somewhere and seek out an old witch doctor or something!  Good excuse to go to Jamaica anyway I figure.

Rena
21 Responses
Avatar universal
So sorry that you didn't have a better appointment! I'm glad it's not fibro--but I hate the "try it for six weeks" stuff. It seems that when they say it like that--like "come back in when you're going crazy from this drug not working" it's like they don't have much confidence that it's going to work at all. Like "try drinking chocolate milk for six weeks and see if that helps."  :)  It's not the dr's fault I guess, that they don't know what's wrong with us--but they're just guessing--which is fine too b/c at least it's doing something which is better than nothing--but then for the next six weeks your quality of life is no better. I want to go on that show (fiction) "House" on tv and get worked over 24 hours a day and not leave the hospital until someone can tell me something--something accurate that is. Patience is a virtue--and I apparently need to develop this one a little more.

In all seriousness though--I do sincerely hope that the drug helps your pain. If it does--go to Jamaica. If not--go to Jamaica.
335728 tn?1331414412
I LOVE your thinking happy!  If the drug helps go to Jamaica and if it doesn't, GO TO JAMAICA!

Hugs,

Rena
Avatar universal
I'm sorry your frustrating journey continues. At least a rheumatological source has been eliminated as the major cause of your problems and pain.

Getting a bone density test (is it a DEXA scan?) is a good idea no matter what. At the very least it will serve as a baseline for future comparisons. Once past the mid-40s, women's bones can really begin to thin, even healthy women. This is not good. For that same reason, taking calcium and vitamin D is important too. Calcium intake in menopausal women (not you, yet) should be 1500 mg/day, in divided doses, since the body can absorb only so much at any one time. I chew 2 generic Tums, ultrastrength, at bedtime every night. This is calcium carbonate, and is the cheapest source. It is fine, no need to buy something expensive. My women's multivitamin also has an extra dose of calcium. It has vitamin D, but only 400 international units, so I take extra as well.

Although it is maddening not have have answers to our major health concerns, we can in the meantime take the best possible care of the bod we have.

Hope things look up for you pronto.

ess
393986 tn?1303825975
Its funny how a drug (steroids) meant to treat flare ups and inflammation can do that kind of harm.  I have heard that it can make it worse for your bones, taking the steroids for periods of time.  Isn't that crazy?

Definately start taking vitamin d, are you starting out with 1000 i.u.'s a day?  I take that religiously and might have to go up to 2000 i.u.'s.   Being deficient in that can cause some major muscular pain.

So when are we going to Jamaica? :)

Love Ya,

Ada
Avatar universal
Hey Rena,

Don't get too down yet!  Those test the rheumy ran might end up being quite helpful.  Even though you passed out, it was good to hear that many vials were taken.  This means she is LOOKING!  That's the good news!  I know it's hard to stay in the game but you have to.  Sorry, no time outs allowed!

Stay hopeful...go out and play in the snow LOL.

Best wishes...
Wanna

335728 tn?1331414412
Ess...I don't know what sort of scan it is...all I know is that I am booked.  I am starting with 1000 IU/day of Vitamin D and 1250mg Calcium Twice/day.  Hopefully this will help and thanks for the info!

Spaz...where you been?  I am looking at flight costs for me but where are we going to meet, down there or in Elliott or here?  tee hee

So Wanna...while Spaz and I are in Jamaica will you come live here in the snow and look after my dog and my fish?  would ya huh...would ya???  Actually it is HOT AND SUNNY here today...well hot is exagerating a bit ok...warm!
I am here for the duration and I hope you are right...I am glad that she is at least looking cause it is a lot more than anyone else has done that is for sure!

Rena
427279 tn?1210919821
im so sorry to hear that it is still a waiting game....and hope you get to feeling better....(can i go to jamica to?)..lolol   i can just vision me on the beach with a walker..lolol....take care....deb
335728 tn?1331414412
Why not be on the beach with a walker?  I am going with my cane and if Ada doesn't stop swelling we can tie a string to her and fly her like a helium balloon! ha ha

Sorry Ada...had to do it!  tee hee

What a bunch we would be...Jamaica would never be the same!  What a party!

Rena
Avatar universal
Sorry that this doctor wasn't more promising Rita.  I have a severe vitamin D deficiency and take 5,000 units a day.

The MS neuro in Maryland is convinced that high dose vitamin D will ward off progression of MS. (although he is not diagnosed and on no MS meds).   Craig takes 10,000 units a day.  And his blood level of vitamin D is still in the normal range.  There are some theories floating around that people with MS can't metabolize vit D as efficiently and are deficient.

Have you ever tried any natural remedies for arthritis?  Can you buy "New Chapter" brand vitamins in your area?.  They are usually sold in health food stores.  Dr. Andrew Weil MD, a famous integrative med doctor, advocates "Zyflammend" by New Chapter for arthritis.  It is a natural Cox-2 inhibitor.  Turmeric and Ginger are two of its main ingredients.  I know people who use it for arthritis with success.

Have you ever had a B12 level drawn?

Steroids are known to cause bone loss when used often.  Craig has a 40 percent bone loss of his spine from unknown causes.  He is on calcium and a supplement called Strontium along with the vit D and this year he had a 9 percent bone increase.  He is on no drug for osteoporosis.

Please let us know how the bone density test goes and all those lab results!!
Elaine
450140 tn?1317947304
Hey count me in on the Jamica trip! The more I read all the posts, we really are all in the same limbo boat. I guess we should trade in the boat for a cruise ship. If we have to be there, might as well have some fun while we're at it!! Take care of yourself. Thanks again for the kind words eariler. Keep us posted on whats going on.

Hugs and Blessings,
Beth
482726 tn?1212807135
I was waiting to hear hwo the rheuma appt went, because I go on wednesday, and didn't know what to expect but after reading this... I lot a blood drawn... I just wanna know if I can go to Jamica too... I promise not to whine about the pain, and I gotta bring my walker too...don't know how the wheels will roll in the white sand but just keep the drinks coming and I'm sure it will all take care of it self, better bring a life jacket in case I have an episode and the wave take me out for a while... lol...

they should have a ms vacation camp for adults, like they have for children, we need our own camp to get away from eveybody else....

Vessel
Avatar universal
A MS camp.  Love the idea.  In fact I would love any idea that would allow Craig and I to escape from our lives for a few days.  But my vote is for Carmel by the sea in California.  One of the most beautiful places I ever saw.  I am just craving to go back there to escape!!

Elaine
Avatar universal
Hi,
Well the fibro thing is good the blood tests great but sorry about passing out! geez

Listen really hear to say I have a friend a travel agent so I want to go to jamica too!!
Listen folks we take the canes, walkers etc, get to the lodge chair hide them underneath and be waited on like princes and princess.... bet they have some cool medcine down there  te heee kidding!

not kidding bout the trip I want off the limbo boat on the jamica shore for a bit!
good luck
Mary
393986 tn?1303825975
I had to LMAO at this thread.  One thing about being swelled up, I could have a birdseye view from up above......:)  hehehe
Avatar universal
(((((Rena)))))))

I've been dx'd with fibro repeatedly even though I don't have any...not one....of the 18 tender points.  Of course, I was told last time that they were just using that dx because they didn't know and wouldn't ever know what was wrong with me @@.  I'm *very glad that your dr didn't do that to you and is trying to find real answers for you:o).

I'm so sorry about passing out!  I've done that before and it was scary.  It sure freaked everyone working in that office out too.  I'm sure they took good care of you yesterday:o).

The camp idea sounds lovely:o).  
293157 tn?1285873439
Well, you survived the Rheum...that's good...sorry about those horrible blood test.  I don't do well with them either.  Not like you though...:(

Now you wait for those results to see what happens....I'm waiting for mine as well.  I hope you feel good about the new Dr.  Even though she is a Rheum and not a Neuro... they can work together to figure things out.  All the Best ...

take care in Jamaca

andie
382218 tn?1341181487
So no fibro, that's a good thing.  You don't need that on top of MS and everything else.  Glad you are having the blood work and bone density done.  The more info you have, the better.  The whole MS / no DMD thing must be so frustrating.  I was wondering if you had written you docs about this?

db

ps: I'd love to vacation with you all but Jamaica is too hot for me.  41 degrees celsius when I was there 15 years ago.  How about a more moderate climate...say, coast of Portugal???
335728 tn?1331414412
Gee...all you have to do around here is mention getting away and wow can you ever pick up volunteers in a hurry!  ha ha

db1 mentioned going to somewhere like the coast of Portugal but to be honest...I want to hear the Jamaican sing-song language and listen to the music all day long!  I love the way they talk and I love the music!

Elaine...I am going to take the Vitamin D and Calcium like she suggested I do but I wonder really if that is the problem.  I drink about 2 litres of skim milk per day and eat a lot of cheese and cottage cheese...I can see there being a problem with the vitamin D since I live in central Alberta and we do have a lack of sun.  
I said to hubby that it is a little ironic that I may be lacking vitamin D which is provided by the sun which I have to avoid now that I am on Elavil!  Can't win for losing eh?
I will give it all a try though and let you know what happens in the end!

So, how many are game for an MS camp for adults in Jamaica?  I think it would be wonderful and I would be the first to sponsor all of you if I won the lottery!  I would hire male nurses for us ladies and female nurses for the few fellas we have around here and what a time we would have eh?!

Life kinda sucks in my quarter today so wishful thinking is a good thing I think...

Lots of Hugs for all of you,

Rena
Avatar universal
Hey Rena!  Sorry I won't be able to care for your dog or your fish while you are away.  I'll be busy at my own camp for Limbo Landers in the Island of St John in the Caribbean.  Snorkeling daily is great therapy!  

As they say in the Islands, "Enjoy it while you con, mon."

Have a good one...
Wanna

251222 tn?1270936117
Well goodness there Rena! But the Jamacia thing, could you add me on? :))  I have been thinking of you. I am learning alot about blood pressure, and that might be a fair idea to have the leg pressure checked, simple enough for them to do.

I have been very low on the Vt. D a few times also, we all have so much in common.

Thinking of you...

Jazzy
251222 tn?1270936117
Well goodness there Rena! But the Jamacia thing, could you add me on? :))  I have been thinking of you. I am learning alot about blood pressure, and that might be a fair idea to have the leg pressure checked, simple enough for them to do.

I have been very low on the Vt. D a few times also, we all have so much in common.

Thinking of you...

Jazzy
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