Question about Heat

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MJB68
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/15/2009 10:48 AM (GMT -6)   
Hello everyone.  I am new here.  Just reading through all of the posts has really helped me.  I am in the midst of waiting for answers as to my symptoms, and had a negative mri scan last fall,  (brain only mri, no contrast).  I haven't even seen a neurologist since this all started 3+ years ago.  I live in Canada, and referrals are needed by family doctors when it comes to seeing specialists.  That's the down side of our health care system.  I just happen to have one of the many physicians who do not make alot of referrals, so this has been excrutiating.  The negative mri only made things worse for me.  At least if it would have shown something, I would have recieved the referral I so desperately need.  I can relate to most of the symptoms and topics on the boards here, and really appreciate the variety of posts.  Until reading this forum, I  had no idea that my jumping eye balls may be another symptom, or the weird spasms in my tounge that just started.  I would have chalked it up to anxiety and not written it down in my symptom log.  I have a million questions, but for now, I will just ask about one particular symptom that has really thrown me off lately.
 
I used to get rid of my massive migraines and headaches by submerging my entire body, head and all, in a tub of really hot water - as hot as I could stand it.  Heat was my friend.  As of this past month however, I can't rely on this for relief anymore because every time I soak in a tub it seems that the heat caused my muscles to go insane, especially in and around my rib cage.  I thought I was having a heart attack the first time it happened.  Everything settled when I removed myself from the bath and cooled down, but I find that the rest of my day now will generally be a bad one for symptoms if I expose myself to heat at all.  I should have noticed this last summer.  It was the first summer that I was suddenly unable to tolerate being outside in the heat.  It is so humid here. 
Can anyone shed some light on this intolerance of heat, or does anyone else experience this? 
Well, I thought I had more to say but I have lost the rest of my train of thought here so I will leave it at that for now. 
Thanks for reading,
 
MJ

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 5/15/2009 1:53 PM (GMT -6)   
Wow! You have classic symptoms of MS. The heat intolerance is one of them. Unfortunately, without lesions, the chances of you getting a diagnosis is slim. Obviously I am not a doctor and I can't diagnose you. In Canada, the requirements for establishing MS are pretty rigid. Not only must you have lesions on an MRI, you must have quite a few! It used to be like 9 or 10 but someone said (Gary??) that this has recently changed.

I wish you the very best of luck in finding answers. You are very welcome here. Please ask away. By the way, the contrast does not help to locate lesions. It only helps to find lesions that are currently inflammed or active. I hope that at least puts your mind at ease that the contrast is not totally necessary. You do eventually want an MRI of your entire spine however. It is more common that lesions are located in the brain but they do occur in the spine as well.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


MJB68
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/15/2009 2:19 PM (GMT -6)   
Wow, Gretchen thanks, I hadn't heard about the rigid diagnostic criteria here, I mean I knew it was rigid but figured it was universally so.
That would explain why my GP talks to me as though I have MS, but at the same time tells me he can't diagnose it officially. He has also said that it could be many years before a diagnosis can be made and that it would be through repeated MRIs.
The heat thing.....how depressing is that? It used to be my very best friend for treating pain. I was so disheartened when I realized I was losing that comfort.
The first time this happened, I found myself punching at my rib area, just like I would for a nasty calf spasm which is a crazy thing to do to oneself, but the pain caused such a panic and impulse reaction. Exactly how many muscles are in this area of my torso I don't know, but many more than I had ever realized before this happened.
Thank you for the warm welcome,
MJ
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 5/15/2009 3:43 PM (GMT -6)   
MJ,

You might want to google "MS hug".

I was diagnosed with 2 brain lesions. A third spinal lesion was discovered soon after. I have collected a few more since then :)

I can't imagine waiting until I had so many to receive treatment. But, treatment is not all that great. It can slow the disease down but it might also do nothing. The treatments are incredibly expensive and I believe that is part of the conservative approach of Canada. My treatment costs my insurance company $ 2,800 per month.

By the way, the treatments do not do anything for current (residual) symptoms. You should be able to get something to help with treatments without an diagnosis. For example, people can get a script for an anti-spasmodic without a diagnosis. You may want to discuss that with your doctor as you clearly have that in your ribcage.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/16/2009 1:23 AM (GMT -6)   
hey MJ,

I was only diagnosed when I became secondary progressive & they don't give any drugs here once you are SPMS. Drugs are not the only things you can try. Do not wait feeling hopeless. There are lots of alternative things you can do that can help you feel better and they are unlikely to do you any harm - the right low fat diet, exercise, meditation. You could get started by seeing a good nutritionist.

The neuro who had dxd me told me that I had MS, my next attack would be in 2 months & he could not help me. Then I saw a dr who specialised in nutrition and he really helped me. I know several people with MS who have brilliant results seeing homeopaths or natropaths.

Good luck :-)
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


MJB68
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/16/2009 9:35 AM (GMT -6)   
Wow, thanks you two - this forum has such a warm feel to it. I am on so many medications right now, and have been for a long time. Right now I am on:

flexerol 2 x daily which is supposed to be a muscle relaxant
tylenol 3s as needed (hate these)
tridural 200mg. (a long acting)
snythroid (thyroid)
b12 shots
clonazepam (anti seizure / anti anxiety)
I was on something for my bladder, but I quit taking it.

I think I am forgetting some meds, but you get the picture - all band-aid meds. Don't get me wrong, I definately don't know where I would be without them, but most have lost their potency or I have become tolerant. I did switch to baclofen for a while, but I can't recall why I switched back to flexoral. Does anyone know what the difference is between these two and why baclofen may work better than flexoral? Something for me to look into again maybe. I have also had to take anti-depressants here and there, but I started thinking (when they didn't work) that maybe I have a reason to be depressed and I need to stop expecting so much out of myself. After all, how many people would be happy about their body giving up on them? The anti-depressants were horrible for me. Especially Cymbalta which is advertised for depression with pain, or FMS. The lowest dosage of that one put me into such a coma like state, it was terrible.

I meditated daily, and that is a good escape. I need to get back into that habit again. I also have a treadmill sitting right beside me in the living room here, but it has become a clutter collector again. Both of these things would do me a world of good - just have to get motivated. I have a feeling that a dx may never come, (unless I cross the border?) but I need to move forward into learning how to cope instead of waiting around for a dx. Wow, I had no idea of the cost of treatment!! That would explain a lot. I've come out of the social service politics at work and into to ministry of health politics at home.

Does joint pain and stomache problems possibly go with MS also, or would those be seperate issues to look into? The joint pain, especially in my fingers and elbows is a new one for me, and I'm trying to seperate so many symptoms here. It gets very confusing. It's pouring rain here today and I just want to curl up. Legs and arms don't want to move at all today.

Thanks again for your thoughtful responses and great info!
MJ
 


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/16/2009 8:17 PM (GMT -6)   
Hey MJ,

I have not tried flexerol but I have baclofen in a pump and it has been wonderful in taking away all pain & some of the spasticity. Oral baclofen is obviously the first option but if you cannot tolerate it and are desperate (as I was) the pump is the way to go. The advantage to the pump is you only need a much smaller dosage (drs say I am getting 1/300th of the oral dose) than the tablets.

Something I am looking at at the moment is Low Dose Naltrexone and Alpha Lipoic Acid (alpha lipoic acid is a supplement). If you type LDN & MS into the web you will be able to read about it. There has just been some research published in Canada re LDN & MS. You will need a scrip but your dr should be happy to ablige & my feeling this is really something to do in the early stages as it prevents deteriorarton.

ThisisMS is also a knowledgable website to look at.

Do try and do as much as you can now then you won't regret it later. I have been on 3000ml Fish Oil (best quality) for 12 years & it really helps inflammation (it is good for a lot of things and also good for the skin so you will look good too:). I also take 2000 Vit D3 (both prescribed by my dr).

Hang in there :-)
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


MJB68
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/17/2009 9:07 AM (GMT -6)   
Thank you so much! I will check out that website as well as the research you mentioned. There was an article in our paper yesterday about a local young woman who controls her MS without meds and with vitamin D only. Not sure how that works, but looking into it.
 


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 5/18/2009 2:59 PM (GMT -6)   

MJ,

I know I always say this, but I went four years without a diagnosis because my brain MRI's were clean.  Get a spinal MRI if you can.


Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 5/18/2009 5:25 PM (GMT -6)   
Dianna,
 
We all repeat ourselves here.  No worries.  Keep telling your story.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 5/19/2009 2:57 AM (GMT -6)   
MJ
I think Dianna's advice is good. I never had a spinal MRI but I think it would probably have shown a lot.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 5/22/2009 2:28 PM (GMT -6)   

HI there - its my turn - ha!  I live in Canada too (Alberta) and I truly know of your frustrations in attempting to get a dx, not alone a referral. My family doctor just wrote me off as being overly anxious, and that was that. i had to prove him wrong and took me two years to do it.

I just recently read that the average doctor (GP) does not know that much about MS, and out of some 2300 doctors who were surveyed, only 17 percent of them had any working knowledge. Out of the 17 percent, only 16 percent of these knew that there was alternative treatment for MS other than steroids - so that is pretty disheartening to say the least.

I had two negative MRIs, which like you, did not serve me well.  recently it has been determined that lesions may not show up in an MRI in early cases, however the damage of the MS is being done, and symptoms are present. Finally for me, when I went for a third one, the lesions did appear. As sad as it is, it was a glorious day for me, cause it determined that it was not all in my mind, that I was not only anxious, I had MS.

There was a time that they would not conclude that it was MS unless at least 9 lesions were visible, but I understand now that that has changed....thank heavens for that.

You might have to be in your GPs face, and start referring him/her to articles that are in print, ie MSDialogue.....there are articles all the time that talk about symptoms, etc...

You can find a whole lot of back issues if you visit www.msworld.com

and isnt heat just a lovely...yes i use to hop in the hot tub, and last 5 minutes, cause I just felt generally ill all over, and dizzy...  I guess at one time, this was one of the ways that the professional would dx MS, stick the patient in a hot bath - ha!

Sorry for going on and on, and have a nice day

Gary

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