Not sure what is going on with me. Help?

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

Not sure what is going on with me. Help?

Postby alekandkelasmom » Tue May 09, 2017 7:31 pm

Hi. My name is Michelle and I just turned 45. I have been told I have a lot of the symptoms of MS, but my lumbar test was negative so they decided not to burden me with that diagnosis. Their words. I do have multiple lesions, but they think it could be from migraines. They said there is no way to know for sure.

I'm so incredibly frustrated, I about can't stand it anymore. I feel like I'm slowly losing my mind and physically feeling terrible too. If the lesions are there and there is no way to know for sure if they are from migraines, how do they know that they aren't from MS?

I started tremoring about two years ago. I noticed I was getting off balance really easy too. That was super frustrating to me as I was a dancer for the majority of my life. I have become seriously clutsy. I have burning pain in my legs, numbness in my arms, hands, legs, feet and toes. Comes and goes. Mostly left side, but sometimes right too. The fatigue I experience is unbelievable. I used to be able to go, go, go and now, I fall asleep during the day. I get a shower and get ready and I'm feeling done. I can't tolerate the heat. It was 83 here today and I felt like it was 110. I was barely moving and yet sweating and miserable with the heat.

My vision suddenly changed last fall, like became bad enough that I have to wear glasses almost all the time now (had to get a new script even) when before I just had to have them to work at computer. I have been lightheaded and dizzy off and on. Bladder and bowel issues started about two years ago and have become worse. My thinking is so foggy and all I keep hearing is it's the fibro or it's the RA. Well, my RA is minimal. It is well controlled with medication and so forth. I don't think all these things can be blamed on fibro and RA. I've had spasms and I tell the Dr. It's disregarded. I cannot get up the steps in my house without having to stop because I feel like I can't climb anymore, like I"m weak. I have literally climbed up the steps like a toddler because I can't walk up the steps. :( I have to think to swallow. I had an issue similar to that before when I found out I had thyroid issues. I couldn't lay flat and I had difficulty eating/drinking/anything. Well, I don't have a thyroid any more and this is back. Has been back for about a year, maybe a little less. I have tinnitus and have problems hearing out of my left ear and my favorite...random itching for absolutely no reason whatsoever.

What can I say to this new Dr to get them to take me seriously? This isn't who I am. This isn't how I want to live. It's miserable not knowing and feeling like you are going completely insane.

Thank you so much for any tips or advice you may be able to provide.
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Re: Not sure what is going on with me. Help?

Postby jimmylegs » Tue May 09, 2017 7:54 pm

hi michelle and welcome :)

here is my canned advice: when the disease management docs are stumped, turn to the professionals who are aiming their patients towards health, vs a manageable dx. if no one has referred you do a dietitian, consider asking for that. if not feasible, there's related work which can be done independently. this kind of work can be particularly relevant for the athletes among us, who clearly have higher nutrient requirements than the more turtle-esque :D
many who show up here believe they have a healthy diet when they arrive. post learning curve, can be a different story!

related - 6 pages of posts in which you may find something of interest along nutritional lines: introductions-f20/topic28969.html
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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Re: Not sure what is going on with me. Help?

Postby alekandkelasmom » Wed May 10, 2017 4:54 am

Thank you for the information and welcome! I sincerely appreciate it! :)
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Re: Not sure what is going on with me. Help?

Postby jimmylegs » Wed May 10, 2017 5:10 am

no problem. i can't work on it now, but later i will come back online and review key nutritional 'usual suspects' relevant to your symptoms in particular.
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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Re: Not sure what is going on with me. Help?

Postby Snoopy » Wed May 10, 2017 9:25 am

Hi Michelle,

Do you take a Biologic for your RA? Biologics have been known to cause demyelination of the Central Nervous System(CNS) along with Neurological symptoms and lesions.

https://www.hindawi.com/journals/crinm/2013/671935/
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Re: Not sure what is going on with me. Help?

Postby lyndacarol » Wed May 10, 2017 11:27 am

alekandkelasmom wrote:Hi. My name is Michelle and I just turned 45. I have been told I have a lot of the symptoms of MS, but my lumbar test was negative so they decided not to burden me with that diagnosis. Their words. I do have multiple lesions, but they think it could be from migraines. They said there is no way to know for sure.
......................
Thank you so much for any tips or advice you may be able to provide.
Welcome to ThisIsMS, Michelle (alekandkelasmom).

Unfortunately, the symptoms of MS are common to many other conditions; there is no definitive test to identify MS; all the other possibilities for your symptoms must be ruled out first.

For instance, migraine headaches are known to be symptoms of vitamin B 12 deficiency, also of magnesium deficiency. Has your doctor tested for these nutrients?

Per your invitation for "any tips or advice," I suggest that, if you have not had the vitamin D blood test called "25-hydroxy D," ask your GP for this inexpensive blood test. Also, ask for your own copy of the test results so that you have the actual number.

Vitamin D deficiency is VERY common worldwide. If you have this deficiency, it could result in the symptoms you describe. In my opinion (I have no medical background), it is a good idea to rule out vitamin D deficiency.

GrassrootsHealth (http://www.GrassrootsHealth.net) recommends the serum vitamin D level should be at least 40-60 ng/mL; many neurologists recommend 70-100 ng/mL for patients with neurological symptoms. My first test last year with GrassrootsHealth was 24 ng/mL, frankly deficient.

Please test first to learn your vitamin D status; discuss your result with your doctor; do not simply start any supplementation before you know your vitamin D level.
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