what is it? please help

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
albiet
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what is it? please help

Post by albiet » Fri Nov 09, 2018 8:53 am

Im having a hard time getting through this again. I would really appreciate any thoughts.

I get some strange symptoms that i have had in the past and would hope that there is someone that could give me their thoughts on whether this could be ms

im a male in my late 50’s and for the last 5 months i have been having many issues.


past:

about 30 years ago (1990)started getting burning sensations in spine and in arms or legs., pins and needles in extremities and head, insomnia, weird dryness/pulling on skin, and a head fog. this lasted about 9 months. doctors thought i was crazy since nothing was found on mir’s taken of the spine and the head along with whatever blood work they did.

in the end a tricyclic antidepressant was given to me. it helped with sleep and drastically reduced the pain and symptoms. eventually most symptoms went away and i went ff the drug.

about 1998 it all came back. lasted many months but went on same drug and possibly other drug to help sleep


2004, had whiplash and ending up getting herniation in thoracic and cervical spine. had back issues for a while which also caused tingling in arms.


2009 - felt like 1990 with added back pain. took over a year to ease up. saw a neurologist specialist would did tons of tests , including MRI of cervical, thoracic lumbar and head. lots of herniations but nothing indicating ms. i was told that I have small fiber neuropathy.

2018 - started getting chest pains- cardio dr said fine. at the same time started getting pin and needles in extremities. started getting head fog - makes it hard to concentrate- i feel like the right side of face around eye is swollen at times but doesn’t look swollen. also my hands feel stiff and slightly swollen when i first wake up with joints hurting slightly. i don’t have any loss in balance. i went back to same neuro from 2009. she looked at some blood work my gp did and took a cervical spine, she is doing an EMG on me this week. she’s says other than that nothing she can do. it been 9 years since i saw her last.

WHAT other questions i can ask her? could it be ms even though MRIs from 9 years ago don’t show it. can it be some other autoimmune disease?

also, i have hard time explaining symptoms. i have some strange feeling in arm and legs that aren’t pins, needles or numbness. how do i figure out how to describe them. same thing trying to explain the brain fog. could really use help.

thank you

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jimmylegs
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Re: what is it? please help

Post by jimmylegs » Fri Nov 09, 2018 3:09 pm

hi sorry to hear. aside from the obvious trauma element, have your professional health care providers helped you 100% exclude any diet and lifestyle contributing factors?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Scott1
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Re: what is it? please help

Post by Scott1 » Sat Nov 10, 2018 2:24 pm

Hi,

The neurologist has probably been able to rule out MS given the results of the MRIs, the symptoms you describe and, importantly, the symptoms you don't have.

The first thought I had is you probably need a rheumatologist, not a neurologist . I'm sure you have something.

Regards,

albiet
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Re: what is it? please help

Post by albiet » Sun Nov 11, 2018 7:15 am

Thank you for your reply.

Since it’s been 9 years since last mris of head, cervical , thoracic and lumbar, shouldn’t a new round of these be ordered to see if something new shows up? Could something now show up?

I read that 95% of the disease is shown in the mris. How are the others diagnosed?

Thank you

albiet
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Re: what is it? please help

Post by albiet » Sun Nov 11, 2018 8:05 am

Jimmy,

No doctor has talked specifically on lifestyle changes.

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jimmylegs
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Re: what is it? please help

Post by jimmylegs » Sun Nov 11, 2018 1:45 pm

hi again. that is unfortunately typical, even with an established pattern of developed nation chronic illnesses :(
do you have a sense of any ways that your typical routine might be out of line with mainstream public health recommendations for exercise and healthy diet?
sadly those kinds of thing are not readily picked up via lab tests in the doctor's usual clinical care setting.
luckily there are other preventative health pros who could potentially identify some useful action items - if you can get a referral to the right kind that is!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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NHE
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Re: what is it? please help

Post by NHE » Sun Nov 11, 2018 5:20 pm

albiet wrote:Since it’s been 9 years since last mris of head, cervical , thoracic and lumbar, shouldn’t a new round of these be ordered to see if something new shows up? Could something now show up?
Yes. Nine years is a long time. Lesions come and go even when a patient is experiencing no symptoms.

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Scott1
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Re: what is it? please help

Post by Scott1 » Mon Nov 12, 2018 2:02 pm

Hi,

Yes, 9 years is too long. I thought you meant they had been done recently.

Regards,

albiet
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Re: what is it? please help

Post by albiet » Tue Feb 26, 2019 9:12 am

its been a while since i posted. i went back 3 times to the neuro that i saw. all she did was take an cervical mri, and emg of my leg and physical therapy. she refused to do anything else and pushed off without any idea of what to do next.

one of the things i had a hard time explaining are some of the symptoms i have. one was a buzzing which after research sounds like internal vibrations of legs and arms. I also have experienced some handshaking and minor teeth chattering.
i posted in the general discussion if anyone has a good neuro or internist in nyc that works with the person to get testing done, i would appreciate it very much.

ElliotB
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Re: what is it? please help

Post by ElliotB » Tue Feb 26, 2019 1:27 pm

Since it appears you are not happy with your doctor, have you considered finding another?

albiet
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Re: what is it? please help

Post by albiet » Tue Feb 26, 2019 2:40 pm

thank you Elliot. I have mentioned that in the post above "i posted in the general discussion if anyone has a good neuro or internist in nyc that works with the person to get testing done, i would appreciate it very much."

thank you.

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Re: what is it? please help

Post by ElliotB » Tue Feb 26, 2019 4:30 pm

Missed that, ooops!! What kind of testing do you want done? Do you have good medical insurance? What do you think you might have?

Something to consider until you get a diagnosis and beyond, proper diet, lots of exercise, elimination of all stress in your life, and nutritional supplements could all be very beneficial to your health for the short and long term. Since there are numerous opinions as to what is best to do for all the topics I mentioned, you will have to do some research and make some decisions as to what you think is best.

albiet
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Re: what is it? please help

Post by albiet » Wed Feb 27, 2019 8:23 am

its hard to figure out what you need done when your having things that you dont know how to explain or where to go.

i just started to eliminate sugar to the best i can and am trying to stop drinking coffee. can you recommend anything else?

what type of exercise are recommended?
what type of drs do i go to that will actually take tests.

ElliotB
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Re: what is it? please help

Post by ElliotB » Wed Feb 27, 2019 9:54 am

Eliminate ALL sugar (it is 'hidden' in just about everything). NO caffeine.

I would also recommend you eliminate gluten from your diet (it too is 'hidden' in just about everything). If you eat meats, eat only 100% grass fed/finished meats. If you eat fish/seafood, wild caught only, NO farm raised products.

what type of exercise are recommended?
ANY exercise is good for you. Walking is a good starting point. Swimming. Anything you enjoy!


what type of drs do i go to that will actually take tests.
To start, A good GP should be able to take care of you.


What supplements if any are you currently taking?

albiet
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Re: what is it? please help

Post by albiet » Wed Feb 27, 2019 11:08 am

thank you for your reply. i take no supplements right now.

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