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After this, no more doctors


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Old 05-16-2017, 07:44 AM   #1
dove062476
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After this, no more doctors

This is kinda my last hope. I have been off and on this board for a while. I tested positive for the EB virus and Lyme back in January. I was glad that the "problem was finally found", until they did a second test and it came back negative. I am glad the second test came back negative, but frustrated that I have to start from square 1...again. So the new doc is having me go to a neurologist for a nerve conduction test or emg.
I am just so darn frustrated at this point. I dont want to go to anymore doctors. I dont want to be poked and prodded anymore. I also dont want to be in pain anymore. The pain and muscle spasms have increased. I have had 3 bladder infections in the past year. My left leg has become more stiff and walking is a bit of a chore. I bent my left leg the other day and had a charlie horse so bad I nearly cried. My neck muscles have been so stiff on and off the last 3 weeks and I havent had full range of motion, especially looking left. My toes go numb now. Cant feel them from time to time. I dont have full range of motion with my right elbow anymore either. Seems like MS is still on the list for the docs.
But after this, no more. I am done. I just cant do this anymore. Financially or emotionally. There are things I want to do and all these appointments are just taking my valuable time and money. I am just SO DONE!

 
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Old 05-16-2017, 08:33 AM   #2
MSNik
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Re: After this, no more doctors

Hi there. I hear your frustration!!

With all that you have been experiencing, have you seen a neurologist yet, or is this your first visit? A neurologist would more than likely order an MRI, and it doesnt sound like you have had one yet...This is a really important tool in figuring out if this is MS or not. Some of your symptoms sound like they could be MS; but keep in mind that MS mimics 400+ other diseases/ disorders...so it could be one of any of the 400+....to dx MS, they have to rule out everything else. Unless you have a really "telling" MRI of both the brain or Spine, diagnoses do not happen quickly.
Some of us do get "lucky". My MRI had me dx'd within 24 hours...but I went to a neuro who's partner is a MS specialist. He didnt play around!

You want to be careful what type of Neuro you see. Not all Neuros are created equally...some specialize in Strokes or Parkinson's Disease....others work only on mobility issues....if you suspect this could be MS, you really need a MS specialist.

Are you familiar with the Revised McDonald Criteria? This is what all doctors use to dx MS...you should familiiarize yourself with it and ask about it when you see the doctor. If that doctor cant answer your questions or isnt familiar with it, you need to move on! Ask for a referral to a MS specailist. Its really important that your doctor take you seriously and know how to either dx, or rule out MS...

I hope you get some answers but an EMG is only the first step...its not a diagnostic tool for MS, it simply will let the doctor know how the signals are traveling from the brain to the muscle...

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Old 05-16-2017, 09:17 AM   #3
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Re: After this, no more doctors

Hi dove062476,

Quote:
I am just SO DONE!
I get it dove. I understand.

Have you had your potassium and magnesium checked (blood work)? Mineral depletions such as those can cause muscle pain and stiffness. Even some with MS have found there muscle pain/stiffness improves once they eat foods with or use supplemental potassium and magnesium.

Some Physical Therapists(PT) work in both area of range of motion and Massage Therapy(MT). The combination is quite helpful for muscle pain/cramping/stiffness.

Just some thoughts while you wait for your Neurology appointment.
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Old 05-16-2017, 11:23 AM   #4
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Re: After this, no more doctors

Hi dove062476,

Lyme disease can have false positives, BUT it could still be in play. I would encourage you to seek an infectious disease specialist for a definitive test. MS mimicries could also still be in play. An MS Specialist can help weed out the variables. There are over 400 known MS mimicries. All these have to be identified or eliminated as part of the Revised McDonald Criteria.

As to symptoms, those which persist for 24+ hours are more likely to be MS symptoms.

As to the cramps and charlie horses, I can well empathize. Magnesium and calcium with good hydration and stretching can alleviate these. Your magnesium and calcium levels should be checked. Additionally, vitamin D levels need to be checked. Nutrient deficiencies can mimic MS. Vitamin D is a major MS mimicry.

Thank you for sharing. I hope we can lend you the support and advice you need.
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Old 05-16-2017, 12:34 PM   #5
dove062476
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Re: After this, no more doctors

The doc is an infectious disease specialist and he reran the second lyme test. I was happy it was negative, but frustrated about starting from the beginning...again. Its not like it really matters, I am allergic to the medicine they give to treat it. UGH. They did the blood work again. Vitamin D and B12 are low. They prescribed me some vitamins. I will start those today. I do hope it helps. If that is all it is...I will be elated! After I posted this morning I was getting ready for work, I went to slide my flip flops on (shoes hurt) and once again, almost fell over, caught my balance. Hubby saw it happen. I wasnt too happy about it. Then I am working and the muscle thing starts again. The spasms, pulling, tightening. Strange thing is all of this happens mainly in my legs. They hurt so bad. They ache and spaz and I walk for a living, this isnt good at all. I love my job! Back in October and November one doc had me going to Water Physical Therapy. I gained very little motion in my left leg. I could actually get dressed with out holding on to a wall. But I had to quit because of a change in insurance and a major $1000 billing mistake on their part, and it just really wasnt helping much. I have drastically changed my diet. Anything, no matter how bad the family whines, if its on my list, I dont cook it. I have since lost 10+lbs! But no matter what I do, I cant shake the pain, pins and needles, the muscle pulling, cramps, charlie horses, numbness and loss of balance, loss of range of motion in limbs. A few weeks ago the muscle spasms were so bad they kept me up until 3 am. I dont know what the up tick in spasms is all about? I do enjoy the weight loss!

Thank you all for the info and the support!

 
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Old 05-16-2017, 01:46 PM   #6
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Re: After this, no more doctors

This sounds allot like a vitamin D deficiency and possibly Magnesium. What kind of vitamins are you starting? Are they prescription strength?

Did the doctor do a SED rate or inflammatory panel on you?
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Old 05-16-2017, 03:24 PM   #7
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Re: After this, no more doctors

dove062476,

Deficiencies can mimic MS. A vitamin D deficiency, for example, will begin to reverse, BUT it is not an overnight healing. You might not notice changes until your levels are normal. The symptoms will begin to reverse 3-6 months after the normal levels are reached.

I do not have any deficiencies, but I had a "low normal" range for vitamin D. My MS Specialist prescribed 1000 iu's per day. She wanted me to maintain a mid normal level. Vitamin D levels will naturally cycle. She wanted my range to stay level to avoid the rollercoaster. Many MSers may experience MS and vitamin D deficiencies.

While you do not yet have a diagnosis, with an MS Specialist applying the gauntlet of testing and the Revised McDonald Criteria, you should be really close to a definitive diagnosis. You are in good company given the position you are now in. The diagnostic process requires patience. Applying the current diagnostic process, the process as a whole has gotten much easier over the years.

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Old 05-17-2017, 09:46 AM   #8
dove062476
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Re: After this, no more doctors

I looked at my vitamin d its 24 on a reference scale of 30-91. The b12 is 212 on a ref scale of 180-914.

 
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Old 05-17-2017, 10:45 AM   #9
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Re: After this, no more doctors

Your D is too low. More than likely it is causing you the problems you describe. It will take months of supplmenting to get it to a normal level, but you should start feelign better as soon as you get it there!
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Old 05-17-2017, 01:30 PM   #10
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Re: After this, no more doctors

Hi dove,

Quote:
Originally Posted by dove062476 View Post
I looked at my vitamin d its 24 on a reference scale of 30-91. The b12 is 212 on a ref scale of 180-914.
You are vitamin D deficient. For comparison, my Neurologist wants my D level between 80-90.

You are on the low end for B-12 and should be higher. For comparison: My B-12 range through the years is 700-800.
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Old 05-17-2017, 01:59 PM   #11
dove062476
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Re: After this, no more doctors

I really am hoping that it is the vitamin d and b 12. I just dont want to do this anymore. No more poking and prodding, no more muscle cramps or body pain. Thats my aim.

 
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Old 05-17-2017, 06:45 PM   #12
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Re: After this, no more doctors

dove062476,

Regardless of the situation, as you are D and B12 deficient, these will have to be addressed. If you are lacking lesions, you will likely need to correct the deficiencies and allow for symptom reversal. It will take time, BUT you can heal.
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Old 05-18-2017, 07:35 AM   #13
dove062476
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Re: After this, no more doctors

I will see how this goes. Ill take the meds, hopefully thats all thats wrong. Ill still have the nerve test done. I am just so done. I have been posting on and off on this web site for so long trying to get some insight and info. Something that will lead me in the direction I need to go in. I think I am on the right track this time. Hopefully its now MS. Just the vitamin d and b12. Thank you all!

 
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