I hope they say MS.. Crazy?

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

I hope they say MS.. Crazy?

Postby Slimslam » Thu Jul 17, 2014 8:11 pm

Once was a healthy person never seeing Dr..For the last few years have seen several: PCP, Rheumy, Orthoped and now Neurologist. UGH!

Numbness, weakness, tingling, itching, vertigo, fatigue, rib cramps and now this vibration like a tuning fork. All of these come and go. I never now how long the symptoms will last or how severe they will be. Usually I can sleep and rest and can manage but this Summer they just cycle.

MRI is tomorrow. If they don't come back with a definite diagnosis, something that has a name and treatment plan I think I will be devastated. I think I could handle anything but I can't move forward without a name. This never ending unknown is horrible.

Who do you go to when symptoms hit? How severe should you let them get? Frustrated. But hope to get an answer after the MRI.

Anybody else understand or is this crazy?
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Re: I hope they say MS.. Crazy?

Postby NHE » Thu Jul 17, 2014 10:05 pm

Slimslam wrote:Numbness, weakness, tingling, itching, vertigo, fatigue, rib cramps and now this vibration like a tuning fork. All of these come and go. I never now how long the symptoms will last or how severe they will be. Usually I can sleep and rest and can manage but this Summer they just cycle.


Have you ever had your B12 levels checked? All of the symptoms you have mentioned are consistent with low B12 and high homocysteine levels. Low B12 and high homocysteine can also cause lesions on MRI as well as white matter atrophy. You may want to read the following thread for background information.
natural-approach-f27/topic24857.html
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Re: I hope they say MS.. Crazy?

Postby Slimslam » Fri Jul 18, 2014 7:59 am

Thanks for this information.

I was dx with low b12 and take injections every month for the last year. My Neurologist sent me back to the hematologist to check levels before he would order the MRI. My Hematologist said ( before even ordering the test) that there was no way my symptoms could be B12 related. So I went back to Neurologist for MRI. B12 levels were 427.
I understand that low B-12 can mimic MS. But Can MS cause low B-12?

Thanks for your reply and information.
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Re: I hope they say MS.. Crazy?

Postby NHE » Fri Jul 18, 2014 11:48 pm

Slimslam wrote:Thanks for this information.

I was dx with low b12 and take injections every month for the last year. My Neurologist sent me back to the hematologist to check levels before he would order the MRI. My Hematologist said ( before even ordering the test) that there was no way my symptoms could be B12 related. So I went back to Neurologist for MRI. B12 levels were 427.
I understand that low B-12 can mimic MS. But Can MS cause low B-12?


I've never heard of MS causing low B12. However, several medications used to treat MS can lower B12 and/or raise homocysteine. Two of these include methylprednisolone (Solumedrol) and interferon-beta. MS is a diagnosis of exclusion. A B12 deficiency is one of the things that needs to be ruled out before a diagnosis of MS can be made. A B12 level of 427 is borderline OK, but probably a little low. In Japan, the lower end of the acceptable range for B12 is 500 pg/mL. Was homocysteine ever checked?
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Re: I hope they say MS.. Crazy?

Postby Marty63 » Sun Jul 20, 2014 4:38 pm

I totally understand your frustration in not putting a name to your health maladies, as I also have a similar problem. This totally not knowing in regards to what is occurring with our physical beings I am of the opinion can only add greatly to one's stress levels and maybe some connected mental health symptoms. I am beginning to also seriously believe that some neurologists seem to neglect that a patient not knowing what is actually wrong with them only heightens health maladies whenever they are dealing with these same patients which of course only shows up their deep lack of concern for a said patient who's only wish is to find an answer to their health problems a.s.a.p.
My symptoms are a weekly disabling fatigue, also head and leg and hand jerks, also my vision has gotten worse in recent times, alongside bowel and bladder and mobility problems with also countless muscle twitches and spasms on a daily basis with added ample pain and numbness and tingling.
As I am also diet controlled Diabetes 2 and with all my blood sugars being normal since my dx of being diabetic 2 my Neurologist is wholly convinced that I have Diabetic neuropathy. DN apparently has a similarity to the symptoms of having MS as it affects the outer nervous system and not the central nervous which MS is attributed to. This I am not convinced about as the symptom of jerking is not attributed to being a diabetic neuropathic nor I believe is the bowel and bladder problems that I also have to deal with. Plus, my neurologist in recent times sent me to a DN specialist 2 hours from my home to confirm this dx and this specialist would inform me that I did not display any symptoms of having DN. Yet here I am 2 months later still awaiting my next appointment with the same Neurologist while my symptoms seemingly are only heightening. Frustrating! is too kind of a word.
Why don't Neurologists simply give folk the MS testing first before they go on a merry-go-around of different testing and total frustration for the patient? Of course the answer to this question may lay with finance which in my mind is purely medical fraud and also morally corrupt. :sad:
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Re: I hope they say MS.. Crazy?

Postby Alainaluvsu » Sun Jul 20, 2014 10:01 pm

There are no tests that say "This is MS". Many other things need to be ruled out first. Besides, easier tests can see if you have things like Lupus, RA, Lyme, B12 deficiencies, or other inflammatory diseases. Even if your MRI tests positive for a possible MS lesion, they need to see if there's evidence that you've had multiple lesions over a course of time, so you'll likely need more than 1 MRI if nothing but to make sure the lesions actually disappear and aren't something totally different.

I'm undiagnosed and they're thinking it's not MS. They have NO clue what it could be, and I've been trying to get this diagnosed since February or March, but they've seen something unusual in my spine AND in my brain. I know how frustrating it is and even kinda wished that they'd DX me with MS so I could just get on with my life too. But after the week I've had with symptoms (a complete inability to walk, extreme muscle weakness, spasticity like you wouldn't believe, bladder leakage, constipation so bad that a prescription strength laxative isn't working, extreme pain, fatigue so bad that I sleep for 16 hours a day, memory loss, poor cognitive function), if this is MS I don't want it. I want something curable. Badly.
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Re: I hope they say MS.. Crazy?

Postby THX1138 » Mon Jul 21, 2014 9:52 am

Not knowing the problem is certainly frustrating.

:?: Possibly ever worse would be to have a diagnosis that not a lot can be done about. Or a diagnosis that, when doctors don't know where to go with diagnosing a new problem, they attribute the symptom to MS, if it seems at all plausible.
In my experience, the diagnosis of MS kind of locks one in a prison where serious attempts to diagnose any new problems are forgone, replaced with the statement, "It's probably your MS."
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Re: I hope they say MS.. Crazy?

Postby Alainaluvsu » Mon Jul 21, 2014 6:48 pm

THX1138 wrote:Not knowing the problem is certainly frustrating.

:?: Possibly ever worse would be to have a diagnosis that not a lot can be done about. Or a diagnosis that, when doctors don't know where to go with diagnosing a new problem, they attribute the symptom to MS, if it seems at all plausible.
In my experience, the diagnosis of MS kind of locks one in a prison where serious attempts to diagnose any new problems are forgone, replaced with the statement, "It's probably your MS."


You're pretty right. I'm glad my doctors aren't just saying "It's MS". They're actually actively looking for other things. Even though it'd be easy for them to say "It's MS" instead of "What the heck is wrong with you???!"
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Re: I hope they say MS.. Crazy?

Postby NytViolet » Sun Jul 27, 2014 6:40 pm

I'm in the same boat. I'm dragging myself to work with the worst exhaustion I've ever had. Nonstop twitching all over, burning feet, left arm and leg feel weak and I also get sharp shooting pains in my legs and hands. My PA ordered an X-ray of C-spine and sent me to an ortho who wants MRI (c-spine only). I've had routine blood work and they're doing an Endo blood panel in August -but the constant running here and there while trying to work is just too much. Not to mention the out of pocket expenses for deductibles and co-pays. I haven't even seen a neuro yet and am too tired to fight this. I'm sending prayers and hugs your way. I'd like to believe that by the holidays we have diagnoses and are improving. God bless.
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Re: I hope they say MS.. Crazy?

Postby holliephonic » Wed Jul 30, 2014 3:01 pm

I also know exactly how you feel. I have been dealing with this for two years. Saw a neurologist for migraines two years ago, did not think to tell him about my other problems, only the migraines because I never thought they were all related. I was diagnosed with trigeminal neuralgia after my MRI was normal. I told him about my tingling in my hands and was diagnosed with carpal tunnel. The pain/numbness in my face went into my back, and now I have muscle twitches all over. I don't exactly know how to describe the feeling in my body. It feels like icy hot is in my veins going through me, my feet feel strange and especially when they get cold, they hurt. I have had trouble sleeping, but I'm tired all the time, even when I do sleep. I've developed a tremor in my hands. This isn't the first time I've had all these symptoms, but they all seem to fade away then come back. We moved almost 2 years ago and I started seeing a new doctor, it's taken me a year to get her to refer me to a neurologist. I finally switched regular doctors and my new one is much better(he actually reads over my file before talking to me). I get to see a new neurologist next month. I was tested for lyme disease and that came back negative, so now I get to start the process of having all sorts of tests done. My new doctor suggested today that it could be MS, but I just don't know. I want a diagnosis so i can just start a process towards getting better, or at least some sort of treatment that will help in the long run instead of just controlling the symptoms.
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Re: I hope they say MS.. Crazy?

Postby want2bike » Fri Aug 01, 2014 5:23 am

If the doctor does not tell you what the problem is Dr. Bergman has a solution. It involves nutrition, exercise, sleep, prayer and meditation. It will not cost you anything to try it. Here are a couple video which explain autoimmune disease.

https://www.youtube.com/watch?v=zGmyUppmt-g

https://www.youtube.com/watch?v=_dhlp8jSiiU
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