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centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/28/2007 7:58 PM (GMT -6)   
I'm still in the midst of what I had/have is a lymes relapse or the starts of lymes..
Is head pressure EVER  a symptom of MS? I'm not talking about a headache/migraine. I'm talking a pressure that feels like a brain fog..
 
Also, the numbness in my foot and arm somewhat subsided, and my energy level improved so I attempted exercise on the stairmaster. My foot became numb again in the middle of doing the stairmaster and my arm also became somewhat numb again. The exercise also made me more dizzy afterwards..
 
Do these symptoms sound like the starts of MS or lymes???
 
Thanks,
Eleanor

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/28/2007 8:31 PM (GMT -6)   
Hey Eleanor

Yes, they do sound like ms...and lyme. Sorry, very close symptoms sometimes. The pressure u'r talking about in u'r head...is it like pressure INSIDE u'r head or OUTSIDE?? There was a post here not too long ago that mentioned that...maybe even u'rs...and tho i didn't realize it at the time...u can get the ms hug on u'r head as well. I suppose it'd be akin to a tightening of the scalp?? Not sure on that, but my closest guess. The thing with ms or any other unknown illness is this...once u figure out what things trigger or bring on u'r symptoms u have to try to stay away from those things as much as u can. That can be very hard or even impossible in some cases, but now that u know exercise does it for u, maybe find another form of exercise that doesn't affect u. Unfortunately u can't know most of this until u've suffered thru it. I'm sorry. As for whether or not they could be ms symptoms and could be brought on in such a way..i think so. Try to take it easy and let u'r body get past this round of exercise...catch up if u will. I'm sorry all this is happening to u, but rest assured u'r not alone and we'll stick by u all the way.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/28/2007 8:42 PM (GMT -6)   
Thanks Rhonda.
I didn't see much if any postings about head pressure and MS so I was wondering..
The pressure is inside my head. It does feel like a brain fog like your head is not attached to your body. I know that's a lyme's symtom, not sure if that's an MS symptom.

I wasn't sure if you heard about exercise bringing on numbness from MS.. It sounds like from your e-mail that it can be a trigger.

Thanks for your compassion,
Eleanor

cocobean
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Date Joined Apr 2005
Total Posts : 538
   Posted 3/28/2007 8:51 PM (GMT -6)   
I don't have MS but I am having the western blot ignex blood test next week for lyme..anyway I was tested for MS at one time and through my reading I learned that exercise can bring on symptoms for people with MS because their body temp rises from exercise and a higher body temp or heat can exasberate symptoms of MS not necessarly bring on attack but exasperate what symptoms they do have.  Not sure if you knew that.  Take Care.

centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/28/2007 9:32 PM (GMT -6)   
Thanks.
I wonder if if that's true for lymes, though..

Eleanor

cocobean
Veteran Member


Date Joined Apr 2005
Total Posts : 538
   Posted 3/28/2007 10:21 PM (GMT -6)   
your right.  they are both so similar it seems...when you were exercising did you feel overheated?  maybe try with a cool fan or window open and see if that helps symptoms at all....i'm no expert at all..i just want sick people to feel better :-)

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 3/28/2007 10:23 PM (GMT -6)   
hi centralnjgal,

I too have MS. Was diagnosed in 1987, by 2 very distinguished MS specialists at a teaching hospital in Philly.

I decided not to post here because I don't ever mean to cause anyone to be uncomfortable with what I've learned regarding MS and my treatment.

but I thought I'd answer cnjgal because of her question. Here's my story:

I am now treating the cause of my MS with antibiotics, and am slowly beginning to feel better. One of my "symptoms" is head pressure and brain fog. I have always had MRI's -- brain, cervical, and thoracic with and without gladolium...I have lesions in both my brain and cervical spine. My initial symptom was severe nystagmus, I've had 2 bouts of ON, and I suffer off and on with Trigeminal Neuralgia. I have neck pain, floaters, L'Hermittes continuously, I lost coordination in my left hand, have a numb left foot and instep, very sore heels,tinnitus....but am considered benign! Really, all things came back to normal except the continuous L'Hermittes and my numb and tingly foot.

Yes, today I'm treating my MS with antibiotics and I could say I have Lyme Disease. IMO, multiple scaring or MS is a symptom, treating the cause of my MS is called Lyme Disease.
So do you have MS or Lyme? hmmm both?

Testing for Lyme is very flawed; and just like MS, it's a clinical diagnosis! I really recommend getting on a course of antibiotics for about 6 weeks; if you have a reaction to antibiotics....you harbor the bacteria. Testing is flawed because most of us test negative, due to our antibodies being so clumped together we don't recognize the bacteria. Our immune systems are really a sleep.

So, listen to your body and like so many others that have a MS diagnosis and are now treating with antibiotics; you too will to be on the road to recovery.

If I may njgal,,,I too experience and still experience a heightening of numbness etc when I get overheated when I exercise. Reason is the borrelia (the bugs) love it cold! and when we get hot they begin to die and it causes inflammation. I wonder if you've been taking your temp, if so, do you find it's under normal range? Again, a lot of us with MS do average 97.0. The bugs are winning, they keep us cool.

Is it possible that years ago you wern't treated long enough to eradicate the bacteria? Yes. This is a very insidious bacteria...

I really wish all here on this board health, we share a common disease. If I can influence just one person to read about lyme disease, that would make me smile.

BTW, as soon as I get my next set of MRI's and my lesions either are gone or almost gone, I do intend to re-visit my neurologist and share with him my success and treatment which lead to me beating this horrific disease! Educating our neurologists---- it's vital!

Best to all who read this, and if anyone has any questions, I'd be happy to do my best to answer them.
tory

centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/29/2007 6:01 AM (GMT -6)   
Tory.
Thank you.
Can you please tell me what antibiotics you are on? I had lymes at 28 and now I'm 41. I am going to an ID doc in a couple of weeks and can't get there soon enough.. I don't think I was treated long enough years ago on antibiotics.
The head pressure/fog is what I had experience before with lymes, but the numbness is new to me..
I am also experiencing bladder issues.. not fun..

Eleanor

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 3/29/2007 6:32 AM (GMT -6)   
I am in treatment since Nov '06. have been on different protocols..mixing things up.

I stared out with Doxy to see if in fact I would have a Herxheimer reaction. (that's the formal phrase of our bodies feeling like crap because of the antibiotics). Anyway, yes, I herxed! We all are different, so treatment is different for everyone.

What I can assume happened to you is you never were treated long enough. Borrelia along with all the co-infections associated with this bacteria hangs out inside our cells! Very tricky, very smart bugs. They replicate and steal the make up of the cell...they take over. Years of having this bug allows them to set up living quarters, and leaves our immune system incapable of fighting them off.

You need to work up to what is called cyst busting. the spirochete turns into a L form, a bleb and then a cyst form (intracelluar). and this takes place within days-weeks of "initial" infection. It's for this very reason, that getting a spinal tap to determine if we have lyme is just WronG.
Spinals will never show the bacteria(spirochete) in the CNS...it already pleomorphed into a L, bleb, or cyst form. It's already inside our cells.

All of this has been researched, proven and published. Very disheartening to know that not many docs and that includes ID docs have this info. I can assure you, if you continue with a ID you will more than likely be told you don't have lyme.....Lyme is a clinical diagnosis, like MS is.
I would recommend you find a doc who is familiar with lyme. they are called lyme literate medical doctors.

I think I mentioned I was tested through IgeneX and have a Negative test result in both IgG and IgM. I do however have lyme specific bands that came back positive. The CDC has requirements that state you need a specific number of bands positive to have a positive test result! Even though they state on their website NOT to use testing as a diagnosis! Very misleading to most PCP's and a perfect excuse for other doctors to say they are following CDC criteria.

Hense, all the underdiagnosed sufferers of diseases that mimic lyme and all the symptoms of lyme!

So, to finally answer your question: I was on Minocycline and Difulcan for a while, then Mino, Azithromax, and Mepron, I will soon start, Mino, Rifampin, and Tindamax. Sounds like a potent cocktail, but it's what is necessary to rid myself of this bacteria I've had for 20 yrs.

I can also say with assurance that although antibiotics are drugs, I am far better served than any steroid treatment I agreed with over the years. I shudder at the times my neuro told me he was giving me steroids to shut down my entire immune system....OUCH! I know today that that is the very worst thing I could have done. I needed to stimulate and help pump up my immune system....gone now are the days of being told, Don't do anything to stimulate your immune system...I take all the supplements I can to yes, help my poor sleeping overwhelmed immune system. These antibiotics will eventually do just that, and then my immune system will be up and runniing and it will ON it OWN fight of this bacteria.

I hope I helped, hang in there and read all you can about the similarities of Lyme and MS.

I wish all who suffer from MS to also become educated on the "cause" of their disease.

sylvie74
Regular Member


Date Joined Mar 2007
Total Posts : 443
   Posted 3/29/2007 7:29 AM (GMT -6)   
My mom was diagnosed with MS when I was a teenager.. and so when I started having a lot of the same symptoms (asking her "do you have this?" when something new would pop up, on the rare occasion I'd chat with her about it), I started to wonder if I had MS as well. However, my Neurologist sent me for an MRI and since she didn't see any lesions, she told me it wasn't MS. (LOL- I find this somewhat humorous, since from what I have read, lesions can pop up during an "attack".. not necessarily be there ALL the time). Anyway.. so it wasn't until quite recently that I started going to a couple boards and asking "what is this?!" and found out that my symptoms are not only possible MS, but Lyme as well. redface I have an appointment with a doctor in May, for testing. (My neuro said she'd do it, but by the sound of it, it's just to humor me).

As for this head pressure, I don't know what other people mean by that or by the term "brain fog". Maybe not all people with MS or Lyme have this? I don't know. I do know that I frequently feel like somebody is pressing in tightly around my skull. I would say everything from the ears up feels just "weird". I'm actually experiencing it right now.

As for the numbness, mine sort of comes and goes. It's awful, isn't it? :( I hope you figure out what's wrong with you. I've been searching for the answer for years now, and some days I just want to say "to h#ll with it!" and just suffer. But that isn't good.. and it wouldn't be fair to my family. So I have to figure it out. I just wish doctors were more willing to help- even admit that sometimes they DON'T know what's wrong, and refer us to somebody who can figure it out.
(undiagnosed) chronic pain, for nearly 10 yrs and counting..


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 3/29/2007 8:16 AM (GMT -6)   
Hey centralnjgal,
Why don't you come over to the lyme board to talk about lyme symptoms? I just don't want to inundate the MS board here with talk about lyme. It does sound like what you're experiencing could really be symptoms of either lyme or MS. Yes, with lyme you tend to feel worse after exercise or in the heat, as increasing your body temp can cause a Jarisch-Herxheimer reaction (a "herx"). It is very possible that you were initially undertreated for your lyme. That's what happened to me...Caught it at the beginning, had it undertreated by my GP, got progressively sicker for 4 years, finally saw a lyme specialist, and am now almost entirely better. There's lots of advice we could give you on the lyme board (particularly regarding seeing an infectious disease specialist...they are notoriously againsts diagnosing and treating long-term lyme).
Lyme Disease since fall 2001; on antibiotics since spring of 2005 (since diagnosis), treating lyme, babesiosis, ehrlichiosis
 
Moderator for Lyme Disease forum


rhodeislandlyme
Regular Member


Date Joined Oct 2006
Total Posts : 50
   Posted 3/29/2007 8:22 AM (GMT -6)   
Being another person diagnosed with MS (10 years ago), here is my advice:

You owe it to yourself and everyone who cares about you to investigate the Lyme/MS connection.

I was diagnosed MS because of lesions on my brain MRI and based on the relapsing/remitting symptoms I experienced. Didn't know it at the time, but those both indicate Lyme.

Over the years, I had several Lyme tests that came up negative, so I KNEW I didn't have it. But, I did have it, and tested positive through Igenex Labs in September of last year.

You must have your doctor (or any doctor) sign the paperwork so that you can get at test performed by Igenex (the only accurate tests available). There is also a test called CD57 (performed by LabCorp). A low number is indicative of Lyme, and does not occur with just MS (whatever that is).

My treatment for Lyme over the last few months has not been fun. But it means so much to me to have a treatable condition, rather than a progressive, permanent one.

Please do not delay! Good luck!

KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 3/29/2007 10:35 AM (GMT -6)   

Hi centralnjgal

I can appreciarte your confusion, as I am someone who has been dx with MS 7 years ago and now treating for lyme.  It is hard to know what we are dealing with.  Even the Drs can not give definitive dx and treatment.  It's frustrating.

What is the cause of your symptoms?  You have to be your own advocate.  I relied on the many neuros I saw and they gave me their pat answers and guess what they were wrong.  I am sorry I did not advocate more strongly for myself at the time but I can not get that time back. I hope by encouraging others to do so it will help someone.  

Since you had lyme at one time it is only reasonable to investigate that possibility.  I know lyme can hide out for a long time (dormant) and return when the conditions are favorable for the bacteria.  From symptoms I have had and some now going away I can tell I have had lyme for a very long time (20+ years).  I was always an exerciser and ate well and probabally able to keep it in check for a long time. 

Feel free to e-mail me.  We can compare notes, and since we live in the same area I can recommend Drs if you want.


centralnjgal
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 3/29/2007 11:03 AM (GMT -6)   
Kim.
Can I get in touch with you another way vs. using the message board? Do you have another e-mail to use?

Eleanor

KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 3/29/2007 1:14 PM (GMT -6)   

Eleanor

You can click the envelope icon under my name to send an e-mail.  I'm not sure what other way you mean.    


twinofdar
Veteran Member


Date Joined Mar 2006
Total Posts : 1837
   Posted 3/29/2007 4:21 PM (GMT -6)   
Not sure if this forum has ever had this posted but there will be a Prime Time Mystery Diagosis show that should be airing in June sometimes about MS and Lyme.

Take good care

sylvie74
Regular Member


Date Joined Mar 2007
Total Posts : 443
   Posted 3/31/2007 3:11 PM (GMT -6)   
Ooh.. that will be interesting to watch. Please keep us informed, so I can let my mom and family know. They think I'm crazy for suggesting MS *could* be Lyme. LOL
(undiagnosed) chronic pain, for nearly 10 yrs and counting..

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