cold sensation on top of my head or sides

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

cold sensation on top of my head or sides

Postby mar0131 » Wed Sep 25, 2013 3:51 pm

Hello,
I have not been diagnosed with MS yet. I had a sister that passed away from MS 4 years ago. I started having a mild numbness on the left side of my face and left arm at the end of June, 2013. I immediately saw a neurologist the first week of July. He ordered a brain and spine MRI. The MRI results came back normal and I was told I do not have MS. I thought maybe I was being paranoid and most certainly traumatized from seeing my sister suffer from Primary Progressive MS. I decided to wait for a couple of weeks and see if the numbness would go away. Well, it hasn't gone away. It is mild but it is there. In addition to that, I started feeling dizzy and I have this cold sensation on my head. My head feels heavy and again numb. I have pins and needles sensations all over my body, muscle tremors, eye pain, tingling sensations on my legs and arms, ear pain, heat intolerance, etc. Pretty much something new every other day. I have already looked for a second opinion. The neurologist I am seeing now specializes in MS and he wants me to go for a new MRI at the end of October to see if I start showing brain lesions. The MRI will be done on a more powerful machine ( 3 Tesla as opposed to 0.7 Tesla for my first MRI back in July).
All my friends think I am being paranoid because of what happened to my sister. I'm tired of everybody telling me that nothing is wrong with me. I don't feel well at all. What really bothers me is the numbness and cold sensation on the top of my head. I feel dizzy when it happens. Does this happen to anybody else? I've read of people with MS talking about leg and arm numbness but not so much head numbness. Does is ever go away? :(
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Re: cold sensation on top of my head or sides

Postby Annesse » Wed Sep 25, 2013 9:04 pm

Hi mar0130~

I am sorry about your sister. I don't think you are being paranoid at all. Your symptoms sound quite serious.

Numbness and cold sensation on top of the head is called head paresthesia. Paresthesias are "abnormal" sensations and they can be associated with MS. Paresthesias can be caused by subacute combined degeneration of the spinal cord. It is called subacute combined degeneration of the spinal cord because it damages sensory and motor nerves. Head paresthesia is mostly associated with damage to the sensory nerves. Your other symptoms could be due to spinal cord degeneration as well.

I made some posts on the the cause of subacute combined degeneration of the spinal cord under the thread "Some Interesting Connections" if you would like to understand more on the disease process taking place in MS.
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Re: cold sensation on top of my head or sides

Postby LFT » Thu Aug 28, 2014 1:47 pm

hi. I too have had months of cold-icy hot sensations to my brain along with many other more classical MS symptoms. I had a brain MRI last winter...unremarkable. I am now following up again with different neurologist tomorrow....I will be trying to rule out Lymes Disease. It gets tricky if it went unnoticed and you've had it a while with blood tests (need social testing other than standard Western Blot)...from what I am told. Apparently, a lot of neurological diseases like MS, ALS, etc are undisguised Lymes disease. I will keep you posted when I have more answers.
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Re: cold sensation on top of my head or sides

Postby LFT » Thu Aug 28, 2014 1:49 pm

edit correction for my last post:
"need social testing other than standard Western Blot)"
should read:
need SPECIAL testing other than standard Western Blot).
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Re: cold sensation on top of my head or sides

Postby LFT » Thu Aug 28, 2014 1:53 pm

sorry, another edit correction to above main post:
"neurological diseases like MS, ALS, etc are undisguised Lymes disease."
should read:
neurological diseases like MS, ALS, etc are UNDIAGNOSED Lymes disease.
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Re: cold sensation on top of my head or sides

Postby ElliotB » Thu Aug 28, 2014 2:15 pm

"Does is ever go away?"

Yes, but obviously it depends on the cause as to how long it takes to go away.

My first neurologist was positive I did not have MS, even though he was aware MS is in my family history. He was not a specialists. The 2nd neurologist was a specialist and made her diagnosis using the same MRI scan that the 1st neurologist has reviewed. He obviously did not know what to look for.

There are over 400 diseases that mimic the symptoms of MS. Also, about 10% of those with MS do not have abnormal scans. MS is typically a diagnosis of exclusion.

My suggestion for now, consider one of the MS diets and take vitamins and supplements until you find out what is going on (this would be beneficial to you regardless of your situation).
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Re: cold sensation on top of my head or sides

Postby rhs1040 » Thu Aug 28, 2014 9:02 pm

Any update mar? I know this topic was bumped from a year ago, but your experience and symptoms sound so much like mine... Wondering if you've got any answers yet.
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Re: cold sensation on top of my head or sides

Postby NHE » Thu Aug 28, 2014 9:31 pm

LFT wrote:sorry, another edit correction to above main post:
"neurological diseases like MS, ALS, etc are undisguised Lymes disease."
should read:
neurological diseases like MS, ALS, etc are UNDIAGNOSED Lymes disease.


Hi LFT,
Welcome to ThisIsMS. You can edit your original post by just clicking on the edit button, making any desired changes and then clicking on the submit button.
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Re: cold sensation on top of my head or sides

Postby mar0131 » Sun Aug 31, 2014 12:40 am

Hello Everybody,
I want to start by saying that I am feeling so much better now compared to last year. Let me tell you what I have been doing.
To recap, my symptoms started June 2013. In August 2013, I saw a neurologist that specializes in MS. He ordered different tests to rule out multiple diseases that mimic MS. He checked my vitamin B12 level which was 957 pg/mL and my vitamin D level which was found to be deficient at 20 ng/mL. He also scheduled a brain and spine MRI for October 2013. As you can imagine, I was going crazy waiting for my MRI. I was really stressed and I was feeling worse. The numbness and the feeling of cold water running down my head were not going away. Some days my balance was terrible and other days I would have episodes of slurred speech. Also, I was having bladder issues, numb feeling on my left foot toes, etc.
As I waited for my MRI appointment, I changed my diet radically. I eliminated dairy, grains, soy, processed foods and red meat from my diet. I had quit smoking in April 2013. In fact, I quit smoking because I had not been feeling well for some time and I thought it was all because I was smoking. Anyway, in addition to changing my diet, I started taking supplements and vitamins including 1,000 iu of vitamin D3 which is what my neurologist prescribed when we found out my vitamin d level was deficient. I was still not feeling better because of all the stress which was only aggravating my symptoms. All I could think about was MS, from the moment I woke up in morning to the moment I went to sleep. I read more than 5 books about MS and MS diets. I started taking a megadose of fish oil and I increased my vitamin D dose to 5,000 iu daily.
I went for my MRI on October 21st 2013. I was supposed to get my results on November 7th 2013 but my doctor rescheduled my appointment to November 14th . By the first week of November I was feeling a little bit better. I was more relaxed. I had already accepted my situation. I finally got my MRI results and I was told I had a spot on my brain. I was diagnosed with a demyelinating disease of the central nervous system. I was told I do not meet the MS criteria yet since I don’t have at least 8 lesions.
By Feb 2014, I kept going with my diet. Feeling better than last year but was still having really bad days. I was noticing that some foods would cause my symptoms to show up. For example, eating fried foods gives me eye discomfort and the feeling of numbness on my left arm. If I eat bread, next day I wake up with a numb feeling on my toes.
I am determined to find a way to feel better. I am not waiting for my MRI to show 8 lesions before I can be taken seriously. All the books that I read last year listed vitamin D deficiency as a possible cause of MS and other autoimmune diseases. I read more and more about vitamin D and I found a doc in Brazil who is treating people with MS and other autoimmune diseases with a mega dose of vitamin D. I got in touch with one of his patients and I increased my daily dose of vitamin D since May 2014. I am feeling so much better now compared to how I was feeling last year and beginning of this year. Before I bumped my vitamin D dose I asked my GP to order some blood tests. Also, I was able to schedule an appointment with this doctor in Brazil. I am actually traveling to Brazil this week for my appointment.
My advice to everybody that reads this because they have been searching online for answers is: Never give up. Never let anybody tell you that there is no solution for your problem. When my sister was diagnosed with MS, we were told there was no cure for it and that she was going to get progressively worse. I made a mistake. I believed that was true and she believed it was true. I can’t say that there is a cure for MS but we don’t have to give up trying.
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Re: cold sensation on top of my head or sides

Postby NHE » Sun Aug 31, 2014 1:33 am

Hi Mar0131,
It's great to hear that you're feeling better. Congratulations on quitting smoking. It will go a long way to improving your health. Moreover, smoking has be found to worsen MS and hasten disability progression.

Be careful with long term high doses of vitamin D3 as it can interfere with / use up magnesium. There has been extensive discussion of magnesium and D3 on the forum. Try running a search search.php Here's one thread. There are many more. natural-approach-f27/topic24537.html#p226515
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Re: cold sensation on top of my head or sides

Postby ElliotB » Sun Aug 31, 2014 5:30 am

Thrilled you are feeling better!!!

"I do not meet the MS criteria yet since I don’t have at least 8 lesions"

Where did you hear this? I am not aware of such a criteria. In fact, it is my understanding there are a small percentage of individuals with MS that do not have any lesions.
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Re: cold sensation on top of my head or sides

Postby euphoniaa » Sun Aug 31, 2014 11:37 am

ElliotB wrote:Thrilled you are feeling better!!!

"I do not meet the MS criteria yet since I don’t have at least 8 lesions"

Where did you hear this? I am not aware of such a criteria. In fact, it is my understanding there are a small percentage of individuals with MS that do not have any lesions.

ElliotB, I went searching, because I knew I had read that number from when I was first diagnosed in 2003. It's part of the 2001 revised criteria that are noted on one of my favorite "go-to" MS websites for basic information:
http://www.mult-sclerosis.org/diagnosingms.html

Here's a quote from the chart I linked showing different combinations of diagnostic criteria:
Positive CSF
and
Dissemination in space demonstrated by
• MRI evidence of 9 or more T2 brain lesions
• or 2 or more spinal cord lesions
• or 4-8 brain and 1 spinal cord lesion
• or positive VEP with 4-8 MRI lesions
• or positive VEP with <4 brain lesions plus 1 spinal cord lesion


It looks like "9 lesions" (MS specific ones, of course) can get you a diagnosis whether you meet some of the other criteria or not. Just as no lesions (or 1, or 2 or 3) might still get you a diagnosis of MS as long as you DO meet some of the other criteria.

I remember it because my brain was so jammed with "classic" MS-type lesions on my very first brain MRI that I got an instant MS diagnosis from the radiologist & a physiatrist even before I saw a single neuro. :smile:

I was told later by the neuro that I had too many lesions to count. It seemed like at that time, the docs really liked to see at least that many lesions to be sure of the MS diagnosis. I'm sure things have changed a bit since then, however.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: cold sensation on top of my head or sides

Postby Deacy » Wed Sep 17, 2014 7:02 am

These symptoms together are now being experienced by a growing number of people. They are odd symptoms..cold head sensation itching all over for no reason. Pain in joints, bee stings..etc. you may have been illegally chipped..perhaps during surgery, under GA. The cold is gamma radiation, the bee stings are scaler waves,..the rest is EMF. Get yourself a RF scanner scan yuor self. Secret human chipping without consent is on the increase. It's here in the UK. These symptoms are usually diagnosed by the medical profession as 'something else'. At worst the victim is diagnosed as delusion.
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