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Multiple Sclerosis Message Board


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Oh You poor baby. First of all, YOURE NOT CRAZY and you havent been "here" long enough to have heard the hot/warm bath/ shower HORROR stories!! No, that wasnt a coincidence....you truly sent your myelin into overdrive..Myelin is what protects the nerves, and what is attacked by MS. Heat is a HUGE trigger in MS patients. It doesnt have to be "so hot", only warmer than the conditions you started in. SO, if you were in a comfortable 70 degrees in your home, and got into a mere 74 degree bath, you did it. The good news is you didnt do any permanent damage. Heat reactions usually reverse themselves as soon as the body temp cools down to normal...however, when it happens, BOY does it happen! One of my first experiences, before I was dx was taking a hot shower on a summer day- getting out, into airconditioned 68 degree house and then starting to blow dry my hair...my body went from cold, to hot to cold to having heat blown at my very long hair...within seconds I was on the ground, dizzy, shaking, crying, not having a clue what the heck was happening to me...my husband made me "lie down" on the bed....but within seconds, I was back in the shower, trying to wash the cold sweat off of me! It wasnt until almost a year later, when my Neuro's nurse was taking my history that I remembered that epsiode. This is why all of us "veterns" tell you to PLEASE keep notes of everything....this is a perfect example of how you want to tell the story when they ask you about heat sensitivity. And, they will...
Now, you said you see a new physician this week...always a thrill, huh? Feel like your whole world is revolving around doctors appointments yet? It gets like that sometimes....This new doc is another primary? Why not a MS doc? Or, A Neuro? Does your insurance demand that you get a referral for a Neuro? IF not, please look into scheduling an appt with one, and when you call- ask if they see MS patients. Tell them you have many MS symptoms and feel you should get an opinion from someone who treats MS regularly...if your insurance DEMANDS that you get a referral from a primary, then talk to the primary about the fact that YOU WANT to be seen by a neuro. Especially if he or she orders an MRI, which might happen. You have every right to have a Neuro read those results and see you.

Desperate, please dont be "desperate". I can tell you arent crazy. You make perfect sense, your sentences are completely lucid and clear~ even your fear is 100% rational. Not to mention your frustration. Look back over MONTHS of threads on this board and see how normal you are. Everyone who has ever gone thru the long DX journey feels like this at some point. Remember though, its necessary to rule out everything else before you can be give a dx..its takes time. I hate that for you, especially since I got a relatively quick DX, but in your case, too many things are happening which no one is willing to commit to a dx overnight. You cant blame them. What if they treated you for the wrong thing??
The one piece of advice I can give you is this: TRY as hard as you can to focus on what is positive....stress, exhuastion and mostly fear can trigger things which will make you feel worse. All 3 are your worst enemies. You really have to find ONE thing to do which relaxes you , makes you smile, or gives you hope. Pet the cat? Brush the dog? Call an old friend who you dont talk to enough? Keep typing away your frustrations here....and if typing is a problem, look into voice recognition. I used it for quite awhile at one point. It works! Find a local support group where you can make actual, instead of virtual friends, people you can actually call when you need them...I found that both types helped me. The people here literally saved my life at the beginning of my journey with MS, however having actual people to see and hug, made it possible for me to have a place to vent where I got automatic understanding. I became quite close with a few people lin my support group, all of which I see once a month. I talk to "you all" so much more often!

Forget the psychiatrist for now, and forget the doc who told you it was in your head. Right now, you need to look for a doctor who wont dismiss your symtoms and one who truly understands neurological diseses. Whether or not it is MS, time will tell, but you have something neurological going on! In the meantime, while waiting to find out, dont be your own worst enemy. Keep in mind that so many of us have been where you are and are doing so much better now. Keep in mind that even if it is MS, heck- if we can handle it, you can! If one has to have MS, this is the time to have it..the meds DO work at keeping things at bay...and trust me, once you get on them and take some control over your illness, you start to relax again. Life will get back some sense of control and normality...its just going to be a bumpy ride until that happens.....believe in yourself, believe in us. We all know what you are talking about both in your head and with your symtoms! A doctor out there will listen to you and get things rolling for you. You have to be persistent enough to find him.
Hugs to you..
Nikki





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