Still no answers for my daughter

hyacinth003 · ‎03-12-2010

She is still in pain constantly and having difficulty with weakness in her lower legs.

The rheumatologist only offered her Celebrex, which she has taken for about 3 weeks. It has not helped at all. He refused to give her other pain medication, as have about 5 other doctors.

She has taken a job in a grocery store. They started her in the bakery (which she liked), but she fell and they then placed her as a bagger. They thought not having to walk around so much would be helpful. Unfortunately, it is not. The work may actually be more physically taxing, and she is having trouble bending down to retrieve things from the bottom of the cart. She said she has to keep one hand on the counter as much as possible. She is in a lot of pain during work and when she comes home.

We told her it is up to her whether to keep the job or not. I don't think she's really capable of it. I don't know if it is HURTING anything or not.

She is going to have an MRI of the thoracic spine now. I wish it was of the lower spine, but maybe we are working down! Went through the wringer trying to schedule it locally instead of going to U of I for it. It is a more than 4 hour travel time, plus the time of the test. Her being on Medicaid has run us around in circles.

Then we will see the neurologist again. I want her to be out of pain and get an answer for her pain and weakness. She is in her 20's, and it is cutting my heart out to see her limp, use a cane, and be in pain all the time. I've heard it said that a mother is only as happy as her most troubled child.

That is so true.

Hyacinth

doxie1 · ‎03-09-2010

I do not have any answers but my heart goes out to you. That sounds so horrible. I hope that somehow she can find answers and treatment that heals.

doxie

K9buddy · ‎03-09-2010

I'm so sorry for your DD. Have they done and EMG on her legs? Seems at the moment she'd be best suited at a desk job.

hyacinth003 · ‎03-12-2010

@K9buddy wrote:
I'm so sorry for your DD. Have they done and EMG on her legs? Seems at the moment she'd be best suited at a desk job.

The neurologist originally said she was going to order the MRI and an EMG. We received the orders in the mail, but none for the EMG. I do think she IS going to have one.

Oh, how I wish she could find something she could sit doing. A college degree and all she can find are minimum wage jobs so far. NOTHING wrong with the jobs, but she is having too much trouble.

Hyacinth

Kachina624 · ‎03-10-2010

Did you ever have her go to your state's rehabilitation commission as I suggested you do months ago? It is their job to assess people with disabilities, determine what they can do and assist in finding suitable employment. Every state has one of these agencies to be found in the government pages of the phone bookbook.

Your (and her) efforts are causing her more harm than good. GROCERY BAGGING IS A JOB FOR STRONG YOUNGSTERS(OR OLDSTERS), NOT SOMEONE WITH DISABILITIES. LET THE PROFESSIONALS HELP HER!

New Mexico☀️Land Of Enchantment

pjoy · ‎03-10-2010

I imagine you'll get all sorts of responses, positive and negative. I hope you get HELPFUL information. :-) Anyway, I went through a similiar thing myself a year and half ago. Ended up with a diagnosis of multiple schlerosis, which I'm grateful to say seems to be mild and I am now taking meds for. MS is really hard to diagnose, and the neurologist will probably tell you that. It might help, though, for you to look up the symptoms and see if your daughter has had any of them in the past. If not, great. If yes, then it's something you want to keep in mind as she pursues medical help.

Annabellethecat66 · ‎03-12-2010

My middle daughter (now 40) was plagued with the same severe leg pain much of her life.

We live in the Washington, DC area and have family members who are Drs and got us into some of the best Drs in the country. No one could help us.

My daughters have always had some form of dairy allergies. When they were babies they couldn't drink regular formula, but had to have weird formulas (this one had a formula that was made primarily from bananas).

As she got older she still had the leg pain. You name it, we heard it from Drs.

Then when she was 25 she was diagnosed with Crohn's Disease, but it didn't have anything to do with the leg pain. She was hospitalized a few times, still the leg pain. We had special orthodox made for her shoes (these cost us $300. You can imagine how expensive it got as her feet grew (we got those when she was around 13). Still leg pain, not as bad but bad.

All through college, leg pain. Nothing seemed to help. Meantime she didn't have much dairy, but would eat pizza and things.

Then after she got married she said, "Mom, I've discovered that as long as I don't eat dairy (and do things like take the cheese off of pizza, etc) the pain is almost gone. As soon as I eat it, I start to feel the pain."

So, here's my advice. It is probably a combination. She should go to a good podiatrist and have her stance checked. She probably needs inserts (good ones) for her feet.

It could be coming from her vertebra which will throw off hips and then make the legs hurt.

People who have allergies to gluten suffer in many different ways. Gluten is in just about everything.

Cut out almost everything you can. Go to a nutritionist (worth the money) and they will show you how to find out what food allergy is contributing to the leg pain. Keep very careful records on what she eats, for how long and how she feels.

I know all of this sounds like a lot and it is. I know I'm rattling on and on. I know how bad my daughter suffered.

Once she does something that stops or slows down the pain she will be willing to do whatever it takes to keep it away because it will be like the angels are singing (I'm sorry, I just feel for your daughter, been there).

I think by now you realize that you and your daughter are going to have to figure this out on your own. That's what we did.

To summarize. I would have a foot Dr check out the way she stands (barefooted) and maybe made inserts for her shoes. I would find a good nutritionist and work with him/her in finding out what food is triggering this (maybe gluten).

I would sit for hours and rub my daughters legs because they hurt so bad. Even after she had two of her babies I'd go to the hospital and rub her legs. By the 3rd baby she'd figured out what it was.

It isn't going to be easy and it will take time and single-mindedness on both of your parts.

Please come back and let us know what's going on.

http://www.drmyhill.co.uk/wiki/Allergic_muscles

Google, "Can food allergies cause severe leg pain". You'll be surprised. Above is just one of the websites.

Good luck. Please come back and let us know how she is. Annabelle

Abrowneyegirl · ‎03-15-2010

@Annabellethecat66 wrote:
My middle daughter (now 40) was plagued with the same severe leg pain much of her life.

We live in the Washington, DC area and have family members who are Drs and got us into some of the best Drs in the country. No one could help us.

My daughters have always had some form of dairy allergies. When they were babies they couldn't drink regular formula, but had to have weird formulas (this one had a formula that was made primarily from bananas).

As she got older she still had the leg pain. You name it, we heard it from Drs.

Then when she was 25 she was diagnosed with Crohn's Disease, but it didn't have anything to do with the leg pain. She was hospitalized a few times, still the leg pain. We had special orthodox made for her shoes (these cost us $300. You can imagine how expensive it got as her feet grew (we got those when she was around 13). Still leg pain, not as bad but bad.

All through college, leg pain. Nothing seemed to help. Meantime she didn't have much dairy, but would eat pizza and things.

Then after she got married she said, "Mom, I've discovered that as long as I don't eat dairy (and do things like take the cheese off of pizza, etc) the pain is almost gone. As soon as I eat it, I start to feel the pain."

So, here's my advice. It is probably a combination. She should go to a good podiatrist and have her stance checked. She probably needs inserts (good ones) for her feet.

It could be coming from her vertebra which will throw off hips and then make the legs hurt.

People who have allergies to gluten suffer in many different ways. Gluten is in just about everything.

Cut out almost everything you can. Go to a nutritionist (worth the money) and they will show you how to find out what food allergy is contributing to the leg pain. Keep very careful records on what she eats, for how long and how she feels.

I know all of this sounds like a lot and it is. I know I'm rattling on and on. I know how bad my daughter suffered.

Once she does something that stops or slows down the pain she will be willing to do whatever it takes to keep it away because it will be like the angels are singing (I'm sorry, I just feel for your daughter, been there).

I think by now you realize that you and your daughter are going to have to figure this out on your own. That's what we did.

To summarize. I would have a foot Dr check out the way she stands (barefooted) and maybe made inserts for her shoes. I would find a good nutritionist and work with him/her in finding out what food is triggering this (maybe gluten).

I would sit for hours and rub my daughters legs because they hurt so bad. Even after she had two of her babies I'd go to the hospital and rub her legs. By the 3rd baby she'd figured out what it was.

It isn't going to be easy and it will take time and single-mindedness on both of your parts.

Please come back and let us know what's going on.

http://www.drmyhill.co.uk/wiki/Allergic_muscles

Google, "Can food allergies cause severe leg pain". You'll be surprised. Above is just one of the websites.

Good luck. Please come back and let us know how she is. Annabelle

This is very interesting-- I worked with a woman who was being dx of MS and went to Dietitian to work on what to eliminate/modify from her diet when she learned that she was sensitive to rice. Her ONLY symptom when she eats rice is extreme leg pain and muscle weakness. Now she is free of all symptoms has no dx of MS and takes no medications! All this after several years of pain and tests.

The point is.... do not give up, press on!

Reba055 · ‎06-23-2014

@hyacinth003 I know how discouraged you can get. I'm still on the merry go round of doctors and tests. I have a ton of spinal issues but my neurosurgeon doesn't think that it's causing the symptoms I'm having, or at least the severity. Most think it's ""some" kind of autoimmune problem. No definite diagnosis yet. I've been at this for YEARS. I'm having more neuro tests in a few weeks. Meanwhile I go from not too bad to horrible pain and weakness. Lately it's been really bad. I feel stuck in some nightmare Groundhog Day.

I really hope you can get to the bottom of it. I would be happy just to get to a point where it could be managed. But I'm not in my 20's. I don't remember. Has she seen a pain management Doctor?

Unfortunately since Obamacare (and this is nothing political ) my experience has been that if you don't fit into the cookie cutter of an easy diagnosis, they want to ship you off to the next guy. No one has time to deal with you anymore. It really wears you down. Best to you! Catch your breath and trudge on. That's all you can do. She's lucky to have your support.

K9buddy · ‎03-09-2010

Your DD does need tests if only to eliminate certain conditions. She definitely needs an EMG as well as an MRI. What about a job as a receptionist or working at a call center, something like that? I hope she has these tests done in a timely fashion as it sounds like she's been in pain for far too long. Best to you and her.