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Old 07-17-2013, 07:54 PM   #46
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4paininOH,

Good luck on your appointments. If I have to drive anywhere during the heat of the day, I set my A/C to "Arctic Blast" and have a large cup of ICE water to drink. I would have to guess that the heat is responsible for much of what is hitting you right now. It is easy to get overheated and hard to get cooled down. Try to cut your "outings" in half and see if it helps.
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Old 07-18-2013, 05:37 AM   #47
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4pain,
Best of luck to you with the tests. You were very fortunate to get them approved and get in so quickly.

Suggestion for you. Invest in a cooling towel. You can find them for about 10$ in most sporting good stores....OR you can invest in a cooling vest and or hat, alittle more expensive if you seek out disability cooling wear....

Either way, at least keeping the cooling towel around your neck and shoulders whenever you feel that you have to run out, and in the car, will keep your body temp regulated. I started using one last year.....heres me, with my business suit on, driving down the turnpike, and a damp towel draped over my neck and shoved down my jacket. Yes, Ive shown up with some damp spots once or twice for business appointments, but usually by the time I walk into the building from the car, they are evaporating...its just water! But it really helps.Keeping the back of the neck cool and even the top of the head (I own the hat too, for weekends), really makes a difference.

It sounds to me like what you are describing is more cognitive and less like vertigo- you wouldnt be driving with vertigo- cognitive issues can be very disconcerting, causing dizziness, "mind farts", confusion, even forgetfulness....and it can be brought on suddenly by the heat..

Try to stay cool. And let us know how things go.
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Old 07-18-2013, 02:19 PM   #48
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Re: Doctor says I am not a Medical text-book case so I am dismissed

Hello, LoL I told my daughter I was going to buy one of the cooling bandanas and wear it in my hair like I did when I was a teenager, to keep cool. I notice I have a lot of heat coming of my head. I think I will try the cool rag thing around my neck, I do eat ice-pop to try and cool myself down. I’m wondering if I should say something to the doctor and see if a can get a prescription of something for this heat. I heard those vest work good. Football coming up I need to do something so I can be there for my son. Thanks for all the information, it was helpful.

Last edited by 2young4paininOH; 07-18-2013 at 02:21 PM.

 
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Old 07-18-2013, 02:41 PM   #49
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4paininOH,

The MS Association will 'lend' you an assortment of goods, including cooling vests. I got several different items from them. I printed off a form which my doctor signed. She approved passive cooling items for me; therefore, I could pick from several items. i would encourage you to look into this. IF your temperature requires an active cooling system, this requires your doctor approving it. My neuro said that I did not require an active cooling system as she was worried that my body temp might drop too far.

If you go to a garden center and purchase polymers, you can sew these into a handkerchief or other fabric. These polymers absorb the water. Over time these polymers will degrade. if you wash the fabric item, you should wash it by hand.
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Old 07-18-2013, 05:00 PM   #50
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4pain,
There are a ton of websites which sell cooling hats, vests and other devices which do not require a prescription and are not terribly expensive. The cooling cloths which the sporting goods stores sell, remain cold, when immersed in ice water for 4-5 hours. My cooling hat does the same...it has a terrycloth liner which "looks dry" but actually cools down my head...

Also, some of the cooling vests have the inserts which you freeze and insert into special pockets, so you can reuse them over and over- I bought extra packs so that there are always frozen ones...I carry the extras in a cooler in my bag while Im working during the day....always trying to stay one step ahead of the heat!
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Old 07-25-2013, 07:19 PM   #51
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Re: Doctor says I am not a Medical text-book case so I am dismissed

Hello it been a rough week I am just checking in I have a lot going on. They found some thing going on I am a little confused. There are 3 lesion on the brain, I am going for a tilt table test and a sweat test on Aug 24th he is checking me for tachycardia syndrome. They have not ruled out MS yet. But I am little scared with everything they are throwing at me. I have bulging disc in my neck press on my thecal sac also. My neuro called today, however I missed her call so I need to call her tomorrow , I received this information from my neuromuscular doctor. I am not sure what these lesion are??? I did horrible on my neurological test again.

 
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Old 07-25-2013, 08:23 PM   #52
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4paininOH,

Lesions can be caused by a trauma, a viral infection dating back as far as childhood, age......lesion shape is generally a consideration, but an MRI does not confirm or deny MS; it is an important tool, but it is not a specific test.

Lay aside your fears because anxiety can cause symptoms to present with or with out MS and those symptoms can cause problems with a diagnosis until they are eliminated. Yes, you have a lot going on, but by the time you are through, you should have answers and more information than you might care to know. You are in good hands and getting doctors to really look at you carefully. You will be fine no matter what comes your way. Some self pampering and some solitude in your "woman cave" should help ease your stress.
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Old 07-26-2013, 04:08 AM   #53
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4pain,

Hi there. Breathe. ok?? You are the same person you were before all this started...knowing, or not knowing, doesnt change the outcome. We can only control what we can control- and this one is OUT of your control. No matter how bad you fixate on it, its not going to change anything.

With that being said, I do realize that not knowing is making you very anxious. Return the doctors call today. I guarantee that if this was life threatening, they would have called you until they reached you! Youre going to hear the latest, youre going to have more tests and youre going to have to wait until those results come back to know if any of it means anything....

But in the meantime, you really DO need to breathe through all this. Alright?

Take each day as it comes and just find other things to think about and do....because no matter how badly you WANT this to be over- youre still the same person, youre still with us and able to pursue reasons/ answers...and they will come when the correct tests are run..

Hang in there. Sending you prayers of strength!
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Old 07-26-2013, 06:24 AM   #54
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Re: Doctor says I am not a Medical text-book case so I am dismissed

Hello, you both are right I cannot control anything that is going to happen except for my stress levels and I have to stop and realize it is what it is. However I would like to be educated on what is going on with my body. It amazes me that I went to the doctors all because of back pain and here I am 2 years later with all of these problems. What the hell happen? My biggest fear is losing all senses and being deformed down the road but I cannot worry about what is going to happen. I have to just live each day as it comes and enjoy every day to the fullest. All for I know I could get hit by a car tomorrow LOL and die and would have worried about this **** for nothing. So once I figure out how to deal with this dam pain and hide it from everyone, I will be OK. I am no longer going to live in the shadows of this body and I am going to help my daughter through her pregnancy and watch and raise my granddaughter and enjoy this part of my life for now. I will have my highs and lows. But I am done it is what it is. I cannot make it go away or wish it away so I just have to deal with it. I realize I have a rough road ahead of me with everything I have going on. I have had 5+ different doctors tell me now that I have multiply things going on so I know this journey is not going to be easy, but with the help of this board, my husband, family and friends I think I can do it. When I hear from my doctor I will let you know what she says in the meantime thank you and May peace and love be with everyone.

 
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Old 07-26-2013, 08:29 AM   #55
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4paininOH,

Since the day each of us drew our first breath, we have been but a heartbeat from leaving this world. In 1982 the attitude towards MSers was fairly pessimistic. In 2002 I worsened rapidly in a 2 week period to where I spent the next few years in a power chair. This did not stop 'dad" because I could still go to the beach and enjoy activities with my boys. You will never stop being "Mom" and you will never stop being "Grandmother" once you obtain that rank and title I think you might surprise yourself.

As needed, try some adaptive equipment and see if it lightens your burdens. I have many adaptive items in my closet. I have used them when I needed them and then put them in my closet until they are needed again. Looking back at my time in the power chair, my body really needed that long rest. Nowadays I use it as my desk chair because it can recline and i can nap in it. I have not driven it in 4 years, but it is there if I need it. Embrace the tools you need when you need them.

As to hiding the pain, I do the same because I have a spouse who worries and that causes her unneeded stress. On a really bad day, I will tell my family that it is a bad day for me. I will tell you too that over the years my pain threshold has increased. what once felt like a 10/10 pain now merits a 3/10 or even a 2/10.

I have remedies for my nerve pain which are 100% effective in relieving pain for me. Each remedy I use has been found by trial and error and by testing. My head, for example, has 3 types of MS caused pain which is not a normal headache. As you are in pain, start with your doctor regarding pain management methods. If these do not work or if they are not what you want for your lie (ie side effects of meds or ?), then start with cold water/cold compresses. Your symptom journal can help you by doubling as a lab notebook. Slowly, you will find solutions which will help you or at the very least, make things manageable.

If you have site specific pain, I would be happy to compare my notes with yours. there is no reason you cannot expect to be Grandma for a loooooong time!
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Old 07-26-2013, 04:46 PM   #56
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Re: Doctor says I am not a Medical text-book case so I am dismissed

Hello, I agree, I am going to have to get some equipment to help with myself. like a wheelchair for the store will help ease the fatigue. Maybe the voice/writing recognitions (SP?) for the computer for my eyes so the do not get so tried as well. As for pain relief I would love to go all natural I tried the chocolate and Pepsi for headache and it work the 1st time have not tried it again. I have a lot of headache, neck , hip and lumbar pain my feet bother me to along with my legs right now. Ice helps with the neck but I don't care for it much, I prefer heat however I usually have to have a fan blowing on me to help because I get to hot. SO I really would like to get of the meds. By the way the neuromuscular doctor office called me today he is adding another test to my tilt table test and I need to change the date because the cardiologists needs to be there so I don't know if one of my blood test came back off or not they did not say anything and he said he would call me with my results when they were all back.. Oh well I am not goanna worry about it, well I am goanna try not to worry about it, LOL. Thanks for all your help

 
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Old 07-26-2013, 05:20 PM   #57
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4paininOH,

The healthiest chocolate is one which is at least 70% pure chocolate (towards the bitter end of the scale). I usually do well with dark chocolate, but my neice sent me a 72% pure dark chocolate bar and it worked more effectively and with less chocolate needed to consume. I have tried Pepsi, Mountain Dew, and Coca-cola, but Dr. Pepper has worked fastest for me. It is the caffeine,but I feel there is a difference (each drink has a different level of caffeine). I think that if you find something that works, use it. My head pains are frequent, but if I hit it early, I can have a good day.

During the summer many of my problems which are heat related are best treated with cold, but I do not like cold either .

I agree that you have to let the doctors worry about you and you just relax and let them "earn their keep" . I think that if we agonize over schedules, words, whatever, it just leaves us strung out and unhealthy. Stick with a relaxed attitude and you will do fine.

As to wheelchairs/Power chairs, there are some excellent sites which rate various brands and accessories. I cannot operate a manual chair due to fatigue rapidly setting in. I bought my first power chair on an online auction because I was without insurance while waiting for Medicare to kick in. My brother welded a frame lift which brought the chair up higher by 4 inches, but it made a dramatic difference. Long term comfort is important. When I got my first real power chair, I chose the ROHO cushions and a power recline. With the changes (AGAIN ) in Medicare, I am no longer eligible for a power chair because I can walk even though my neuro says that I need one. If you get one, I would encourage you to look at how it fits you. Try one out and see how it feels after 4-5 hours. I never had one pressure sore nor soreness at all with the ROHO cushions and never sweated either. If you can, try out several demo models and find one that helps you overall. My brother-in-law showed me his light weight manual chair and it was light! The others felt like heavy giants in comparison. He also went with "frog legs" (I think this is the name). These are front caster wheels with material which acts like shock absorbers.

While scooters are cheaper, they are not as mobile around a house. You might check out hinge extenders for your doors. These allow a door to swing out of a standard frame and keep your knuckles from scrapping!

Your state might have an ADA guideline book. I got one online and I used it when I built our house. Here in Kansas there are tax credit available for ADA remodeling.

Embrace the tools you need. I will share one last story and it is that of my roofing contractor. His wife discovered that she had had MS for 15+ years, but had been misdiagnosed. After getting a diagnosis, fatigue set in and kept her from her HS kids activities. Her husband bought her a power chair and just using it at home has extended her healthy times so that she can now attend her kids' events all week long. I found this to be true too.

As I slowly got better, I began to spend more time out of the chair, but I still needed rests. Eventually I could make it all day and sit in a regular wooden chair to rest. By using everything you can to extend your day and your family connections, you earn a bit more freedom and MS slowly loses its grip over you. You can still have set-backs, but with an inventory of adaptive equipment, you can be ready for each battle with MS.
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Old 07-27-2013, 09:35 AM   #58
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Re: Doctor says I am not a Medical text-book case so I am dismissed

Thanks for the information, I just realize I am sitting here talking about wheel chairs it has come to this point in my life that I need one. I can remember the day that the back doctor told me I would need one at one point in my life for my back but here I am needed it for a whole different reason. How in the heck did I start with back pain and wind up in the neurologist office HMMM!!. Oh well I guess shopping for a wheel chair is going to be a challenge, kind like car shopping LOL. I have come to terms though I need one I am so tried just going to the store, that is not normal..
Have you ever had a tilt table test? if so what are they like? I watch you tube but nothing like hearing it from someone. I am having a bad day today I am so tried and it is raining so the pain is even worse then normal, I have that electric zappy feeling from the rain today. well not going to keep this long , just wanted to say thanks for all of your help. Keep the positive stuff coming PLEASE..

 
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Old 07-27-2013, 10:04 AM   #59
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Re: Doctor says I am not a Medical text-book case so I am dismissed

2young4paininOH,

I have never had a tilt-table test and if i did, i imagine that i would last all of 30 seconds. I can get dizzy very quickly nowadays. I tried a whale tour in Long Beach and it was not good. I do not think I could even ride a cruise ship either. If I go fishing, I sit on the shore. I once rode on a missile cruiser in high swells and I did not bat an eye. Nowadays things can get iffy on the second step of a ladder!

My MS Specialist tries to push her patients to keep their legs moving as long as they can. When my back issues arose, it was due to one sided weakness which basically twisted my back as the strong side compensated for the weak. I used fore arem crutches for walking . In the store I braced my arms on either side of the shopping cart and let my service dog pull the cart. He was only 6 months old and it was something he could do without injury to his growing ligaments. When he was 18 months old i transitioned to a walking harness and eventually the forearm crutches went into the closet where they remain today.

If you do need a wheel chair, remember to keep moving and stretching to prevent muscle atrophy. I use a passive exerciser (exercycle) which I bought online after my doctor recommended it when my left leg stopped working.

There is a local store not far from here and they have many floor models of wheelchairs and power chairs. If you have this kind of store, I would encourage you to go and sit in these chairs and use them. Some of the better stores will have an "obstacle course" where you can give the chairs a spin. (Test drive). When you whittle down your choices to 3-4, then go online and read the long term user feedback. Also, ask for a chance to try out each choice in your home. If you choose a manual wheelchair, make sure that you are able to use it on your own if you are driving a car. Their are lifts available to fit in your trunk or roof or bumper. If you get a power chair, forget about breaking it into pieces to fit in your trunk! I tried this and it can be a nightmare and even after several times, I still found myself worn out- too worn out- and my destination lost its luster.

The nice thing, too, is that the wheel chair can be painted with ghost flames, spinners for your wheels.......you need not run around in a drab, boring chair. I saw one gentleman who had a power chair with a port that would power his laptop.

You might also look at some mobility magazines which highlight the latest equipment available. The United Cerebral Palsy Association has a lot of great feedback for various models too. Lastly, there are mobility expos where you can go and see vendors and test their equipment too.
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Old 07-29-2013, 02:44 PM   #60
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Re: Doctor says I am not a Medical text-book case so I am dismissed

Hello,
Just want to say hi and do a little venting. I had to go to the ER this morning I was having chest pain and what felt like heartburn (even though I do not get heartburn ) and my left arm was in some serious pain with sharp shooting pain. They did a EKG which was abnormal and an stress test which they said was OK and took some picture that were good, They had they never to tell me that I probably have had this sense I have been little. That my heart probably skips beat like this always and it was just heartburn, I told them that I know I have not had this since I was younger, but took the heartburn medicine and said I would follow up with my doctor. When I was 16 and gave birth to my son I almost die they had me hook up to ever machine; including the heart machine I had nothing wrong with my heart then. I am happy that the stress test came back good but just because you cannot explain something donít try and blame it on a life- long childhood diseases or what every just say you cannot explain it. Anyhow, I have been so tried for the last 3 days and yesterday I was not myself and was nasty to everyone because of the fatigue, I cannot get enough sleep, I wake up and I am up for 2 to 4 hour and I have to nap and I nap for 2 to 3 hours. It is a big circle. I just want to sleep but I canít seem to get more than 5 hours at a time because I wake up in so much pain in the middle of the night. I am irritable and become nasty because I am so tried. I wish they would just give me a diagnose and get me out of limbo-land so I can get the right medicine to get this under control and sleep right and stop these muscle spasms, and tingling, pain, Even my vision is going haywire etc, etcÖ. Sorry I just needed to vent again..

 
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