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Old 05-23-2010, 08:41 PM   #1
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Need Advice

So Im still learning my boundries on what I can and cant do. I know I can do anything I want but I still need to learn my limits. Today I played in a golf scramble for the first time in my life. It was in memory of my aunt to raise money for CF so I felt like I needed to play. The problem is it was over 90 degrees here today and Im pretty sure I over did it because now Im having problems with my throat. Its like it hurts to swallow because its like the muscles in the front dont want to move. Almost like a huge knot. In the past Ive only had this feeling in a small portion of my throat and it didnt last for really long periods of time. It would just come and go. I noticed during the tournament it starting to happen and now it feels like the entire front portion of my throat and it even is affecting my talking a little. What should I do? Do you think it could have been the heat and pushing myself too hard? If it was from that does it normally go away soon or do you think this is something I should call my doctor about? Its never been this bad. I just dont know. I feel like Im crazy. I didnt get any dizzy spells or numbness today. The only symptoms I really felt were the ones with my throat and I noticed my depth perception got a little off.

 
Old 05-23-2010, 09:55 PM   #2
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Re: Need Advice

When my throat is bad, ICE water helps me. When you are on the course, I would suggest that you use a cooling vest and ride a cart between shots. You might also try a tepid soaking in a tub. I think that you probably pushed yourself too much. This is a lesson in limits. Think back what hole you were on when you started "feeling it". If you were on the 7th hole, then you probably should have stopped at the 5th hole. Depending on the playtime, you might want to adjust your start according to the temps.

You might need to take 2-3 days rest out of the heat. Stick with ICE cold water and stay hydrated.
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Old 05-24-2010, 07:51 AM   #3
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Re: Need Advice

I too have problems with the heat it took my stubborn butt a long time to learn my limits. at 90 degrees it is way too hot I will not go out if the temp is above 80. it took about 7 years for me to accept that, being that I live in S.C. and grew up in the heat. I am fortunate I haven't experienced any throat problems (yet) the ice water sounds like a great Idea you may want to try pop cycles as well they at least have a flavor. It worked for my son when he had his tonsils removed.

 
Old 05-24-2010, 10:27 AM   #4
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Re: Need Advice

Thanks for the advice. When does this become dangerous? I thought about going to the ER last night but I didnt know what to tell them or if they could even do anything. It got worse throughout the night and it really scared me. It felt like the feeling went all the way down my throat and into the beginning of my chest. Then during the night I woke up because my hands and arms kept going numb. The numbness is gone but my hands have tremors a little worse today than a normal day. The feeling in my throat is almost normal again. Just a little feeling of trouble swallowing now and then. My doctor hasnt given me a full diagnosis because he wanted to wait until the second MRI but he said he was pretty sure. The information I find online just tells so much. He hasnt started me on any meds and didnt tell me anything to do except google MS. My next appoitment isnt until Sept. I know it had to be the heat that caused the episode last night but it really scared me because its never been that bad. When do most people start meds? Most of the time I honestly dont feel like I need them but after yesterday I feel like I need more information that a doctor telling me to google it.

 
Old 05-24-2010, 11:23 AM   #5
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Re: Need Advice

I think it becomes dangerous when you start to feel woozy. Heat stroke is a genuine concern. With MS you can start perspiring and sometimes it does not stop. Hydration is quite important. When I start to sweat, I have to make sure that the flood gates do not stay open. I might have a couple of tepid showers to control my temp.

Learn your temperature limits and do not sacrifice your health for anything or anyone unless it is an emergency. The heat index will vary during the summer and you need to learn what your upper limits are.

I would get word to your doctor what you just went through. At the very least, you might be able to see him earlier. Keep this in your "do not do again" experience folder. Perhaps your golf scramble can be changed to early spring or fall?

Take care!
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Old 05-24-2010, 05:30 PM   #6
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Re: Need Advice

I just wantd to add too, that the school of thought on when to get on DMDs varies. The newer school of thought is to get on them asap. Even people with CIS (clinically isolated syndrome, meaning only one actual episode) are getting on drugs, to prevent a second from happening. The older school of thought was that until "we" know for sure- meaning too many lesions or permenant disability occur, we dont start you on anything..

Can you live with waiting? Its YOUR choice, not your doctors. If you can, seek a second opinion and try to get your MRI pushed up further. The symtoms you describe like Jayhawk said, can cause heat stroke- which is dangerous. However, more importantly, it happend for a reason. Did you develope a new lesion? Only one way to tell. Will it heal itself? Probably not. I know that when I woke up with numb tingling hands 5 years ago, it scared the heck out of me! Even with a really quick dx, and starting Rebif within a month, I still have no use of my left hand and fingers. This morning, I woke up and the right one was tingling. I was scared for a few minutes until I realized that it wasnt the same type of tinging I felt on the left side. Will it return? I pray not, but I cant be sure. The humidity has been especially bad here in the NE for the past week. Im sure the change in temps isnt helping. Like you, I appear to be really heat sensitive and humidity just adds to it.

Think about a second opinion or at the very least calling your doc and insisting on being seen sooner. It will give you peace of mind, which is also very important when dealing with this disease.

Wishing you better days ahead.
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Old 05-24-2010, 05:57 PM   #7
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Re: Need Advice

Im definatly going to be on the phone in the morning calling my doctor. Ive stayed inside all day in the air conditioner. Im in KY and it was 90 again today and I know its going to be like this all summer and the humidity is always horrible. Im even starting to feel the band like feeling around my forearm again. I also went to my eye doctor today to get a new prescription for contacts and she had me freaked out because the vision in my right eye has gotten really bad so she took a pic of the optic nerve and said it didnt look damaged but she said is comes in episodes and needs to be watched closer because the change is so drastic. The neuro I am seeing is a MS specalist but Im going to take your advice and look for another one to get a second opinion. Last night about scared me to death and I think I deserve more information than telling me to google it. I guess learning my boundries will be a trial and error type thing. One thing I know for sure is that Im never playing golf if its 90 out again. Its just not worth it. Thanks for the advice. It really helps alot to hear from other people who have MS. I find some of the info online is so in depth and there is so much of it I find it overwhealming and I cant focus enough to really read all of it and actully remember it.

 
Old 05-24-2010, 07:12 PM   #8
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Re: Need Advice

Honey, the one thing any doctor should NOT be telling you is to google your disease.
There is so much bad info out there. None of it is censored or moderated- you dont know if you are reading something because someone wants to sell you something, or if its simply an opinion. Boards like this exist, because all we do is offer our opinions based on our experinces. Nothing more. No medical help here, right?
As for your eyes- they are probably the most important sense that you depend on. Go see a Neuro-Opthamologist and get them checked out. Call your insurance company or your Neurologist to get a referral, or simplly call the local hospital and ask if they have one on staff. It might take awhile to get an appt, but if you tell the secretary that you have MS and are having problems, youll get seen. Its worth it. A picture of your optic nerve isnt the same as treating the inflammation which might be there and the only way to treat it, is with IV steroids. A good opthamologist, should be referring you to a Neuro-Opthmologist anyway.

As for trial and error, unfortunately alot of learning about this disease is just that. You have to learn your limits....for me, blow drying my hair is OUT on hot days, unless i have the a/c set to about 60 (and then my husband screams!) I had to cut 8 inches off my hair last year because I finally gave in and admitted defeat. As for the hot Kentucky sun, start experiementing with cooling vests and hats which keep your head cool...they sell hats which you soak in ice water and they remain cool for up to 3 hours. I have one, its adorable. I wear it in the winter when it isnt wet- just because. The idea is if your head is cool, your body stays cool...but you can also invest in vests and shirts which have built in ice packs if you know you are going to be outside all day. Think bandana around your neck, dipped in ice water, too. it helps.

Stick with us and we will keep your body cool and your spirits up. ok??
Hang tight and let us know what progress you make with your phone calls.
Nikki
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Old 05-24-2010, 08:10 PM   #9
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Re: Need Advice

Ill let you know what I find out tomorrow. I go back to the eye doctor next monday and I think she did say something about finding someone to refer me too. She didnt seem to please that no one had done more test and she is limited to what she can do. Im going to look for one of those hats and I think they actully sell bandanas that have like a ice pack or something built in that goes around the neck. I just cant remember where I saw them. Dont worry my spirits are still high Im not bumbed about having MS. I figure I cant really change my situation so I might as well make the best of it and take the ups and downs as they come. I think last night just scared me because it was the first sudden severe reaction Ive ever had like that with my throat. Haha right now Im just a ticked 23 year old because all of this is happening and my doctor didnt give me any info. I have a feeling the reason he said google it was because I was the last patient of the day. Oh and one more thing I meant to ask was do you think a spinal tap is worth it? I dont understand why he wants to stick a needle in my back when he already knows my symptoms and the lesions found explain why they were happening. Couldnt he just use a second MRI to get the second concrete evidence he wants for it to be so called offical?

 
Old 05-24-2010, 08:24 PM   #10
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Re: Need Advice

A spinal tap is not always necessary. For me, it was the very last test and it was negative. I had a second one 20 years later and it was still negative. The LP is not 100% effective. Of those who are diagnosed with MS and who also had an LP, 15% have negative test results.


Should you get an LP, sometimes it is necessary in order to push the medical establishment off the proverbial fence and allow you to have a definitive diagnosis. The LP is useful in checking off many diseases which can present with MS like symptoms, but a good doctor can diagnose without the LP. The VEP is a recognized piece of evidence if you need to get disability. After my MRI and VEP there was a second MRI of my thoracic spine which confirmed active lesions.

No single test provides a diagnosis for MS. Doctors arrive at MS when all other possibilities have been ruled out. For some this process is quickly completed, for others it takes time due to the difficulty of getting positive test results. Others experience delays in getting a doctor to step up and say with certainty that you have MS. Some of this, I believe, is the result of our litigious society.

The LP probably causes more stress than any other test. Do not let it frighten you. If you need one done, come back to the boards and you will find much encouragement. In 1982 I had to be hospitalized to have an LP, nowadays with the advent of the light bulb , the procedure is done in the doctor's office. Believe me, the doctor's office is easier than it was in 1982!!
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Old 05-25-2010, 03:21 AM   #11
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Re: Need Advice

I agree with Jayhawk on the spinal tap. Its a test which caused me massive anxiety, but to be honest wasnt a big deal once I had it done. The results were they ruled out certain brain infections , Meningitis, PML and something else.....they look for Obands in your fluid, which supposedly point towards autoimmune diseases. however they arent specfic as to WHICH autoimmune diseases and like jayhawk, mine was negative for obands....

However with the 50 lesions on my brain, the ON, which I had a few times, the symtoms, the balance issues, the heat sensitivity - I was given a dx based on the fact that I met criteria. So no- I dont think you should be forced into having it, but if you choose to, it might bring you closer to a dx.

Let us know what you find out.
Prayers for strength to you...
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Old 05-25-2010, 01:21 PM   #12
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Re: Need Advice

Ok so I called my doctors office early this morning and its almost closing time and I havnt heard back from them. Its another 90 degree day and even just going outside and getting in the car is making the world move from time to time today. My hand tremors are still bad and made it hard to even put my contacts in. Im getting really frustrated because everything is slowly coming back. I dont know why they told me to call if things got worse if they wernt even going to help me. Sorry for ranting.

 
Old 05-25-2010, 04:11 PM   #13
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Re: Need Advice

You are allowed to rant, but the more I hear about this doctor, the less I think you should stick with him. You were "blown off' and told to read up on your own disease......now you cant get a call back. Think maybe its time to find another neurologist? I would, if I were you.
Call them again in the morning and "blast" them. If you still arent given an immediate appointment, you might want to consider going to the ER. What you are describing, is a relapse- and its not going to get better on its own. Even the ER can start you on IV drugs and get the inflammation down.
Think about it...
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Old 05-25-2010, 06:05 PM   #14
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Re: Need Advice

Believe me Im going to look for a new one. I even called 2 more times this afternoon. The second time the person said they make calls and the end of the day. The 3rd time the woman said they have been really busy but that a nurse would call me back. Its 8:00 here so Im not getting a call back today. Im calling again in the morning and if they can get me in at some point I will go but Im just going there until I can find a new doctor. Im new to all of this and having everything come back like it has is new and a little scary espically when I call the people who were suppose to help me and I couldnt even get a call back. I ended up going to the gym for 2 hours and did very low impact exercises. I put the big fan on and did a pilates class and then the people who worked there showed be some other exercises that help work the muscles without getting too hot. I took a ice pack with me too and put it on my neck and head when I even started to feel hot. Right now I feel a little better but I know its proably going to come back in the morning or even tonight. Ive never had a infusion. Do they take a long time or make you feel sick afterwards? Im really thankful this board is here because without it I would be totaly lost right now.

 
Old 05-26-2010, 03:09 AM   #15
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Re: Need Advice

An infusion takes about an hour, its a slow drip into your vein of a type of Prendisone Steroid, which reduces inflammation and makes you feel better. The side effects are a lousy mettalic taste in your mouth for a few days, sometimes a burst of energy- and occasionally it makes you HUNGRY! Some people do complain they get moody on this; however its a short lived thing. Within a week you are back to yourself....and truthfully, Id much rather be moody then in pain!

Now, I know youre scared, but you dont know that you need IVSM (intervenous steroids) or Intervenous SoluMedrol, which is the proper name of the drug. BUt I also think you are maybe overreacting to the bigger picture. If you were having a MS relapse, it would be highly unlikely that you could get thru a pilates class. It sounds to me, that the heat is afffecting you in a way which is making you dizzy and over-reacting to things.

You really need to either go to the ER and be evaluated, insist that your doctor sees you and does something for you, or stay home in the a/c, stop running around in the heat, increasing your problems by working up a sweat and realize that with MS, taking care of ourselves is the number one priority. The anger you are spewing by not getting a call back could be better used at finding a new doctor. And the fact that you went to the gym at all, pretty much nixes the idea that youre having a relapse to begin with.

I hope you feel better soon. Scared is one thing that we all understand. Its terrribly scary when you dont know what is going on with your body....but please dont hurt yourself worse by trying to work out. that is counter-productive at this point and if you tell your doctor you were able to do that, he is going to insist this is all in your head. If you really are feeling all that terrrible, you should be evaluated as soon as possible, but please dont make it worse by overheating yourself.
NIkki
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