Starting to really dislike doctors

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
dana1985
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Starting to really dislike doctors

Post by dana1985 »

I just need to vent....

I started to have symptoms back in June that lasted through the end of October. I saw my primary doctor who suspected MS so he sent me to a neurologist. The neurologist did an emg/ncv and mris of my cervical and thoracic spine (all of which were normal). Then saw my primary doctor again who thought maybe I wasn't sleeping enough and that could be causing the symptoms so he sent me to a sleep specialist. Then both my primary ordered a set of blood work and the sleep specialist ordered a set of blood work. Then when all of that came back normal my primary sent me to get a bone scan. And when that was normal he sent me to see a rheumatologist. The rheumatologist sent me for more blood work (again all normal). Then my primary sent me to an out of network top rate hospital to see another neurologist. And still led to no answers...

Then November and December I was symptom free. Then January 10th I developed a pain in my right eye that only occurred when looking down. So then my primary sent me to an eye specialist. She suspected ON so I then needed to return to see her three days later. She ordered mri of my optic orbits and the results were normal also. Then the pain and cramping began again and has slowly spread and increased with intensity. So then I was sent to a neurologist again. The same one I had seen originally in June. He said again that my symptoms were not neurology related and that since while it could sound like MS that my mri of my spine and optic orbits/brain were clear so there was no point in a lumbar puncture. He said he thought it could be a mood disorder and I needed to see a psychiatrist. He really made me feel like I was crazy. I really am offended and frustrated.

And after several hundreds of dollars spent to see my primary on numerous occasions and seeing several specialists and being used as a human pin cushion, I feel as though I need to just give up. My desperate search for answers has gone nowhere. I have no idea what to do next. But I am pretty sure I just can't put anymore hope, money, time, energy, effort etc. into doctors who just don't seem to care enough to truly try to figure it out...
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lyndacarol
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Re: Starting to really dislike doctors

Post by lyndacarol »

dana1985 wrote:I just need to vent....

....I have no idea what to do next.
At one time or another, each of us has felt the need to vent. We understand.

I understand especially well. In the year before my MS diagnosis, I went to the Minnesota Mayo Clinic, where my managing doctor sent me over a two-week period to MANY different departments for MANY different tests (all normal, until they thought an MRI showed a herniated disc). They were trying desperately to find the cause of my symptoms. They misdiagnosed my problem as a herniated cervical disc and I had surgery unnecessarily. I wish my story had a different ending, but I do not fault the doctors – they tried their best. My strongest accusation is that they were unwilling to admit that they simply could not find the cause and did not know.

MS is a difficult condition; there is no definitive test for it.

The doctors at Mayo's did not screen me for a vitamin B12 deficiency, which I now believe was the root of my problems all along. MS is not necessarily the same condition, with the same cause, for each of us. But perhaps ONE person does have a B12 deficiency, and for that reason I encourage people with the symptoms to rule out the possibility first.

If your primary doctor, GP or internist, feels more comfortable referring to a specialist to investigate, ask to see a hematologist and ask for thorough testing – not just the serum B12 test alone.
dana1985
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Re: Starting to really dislike doctors

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So had some blood tests done at the end of January that showed elevated wbc, elevated lymphocytes and elevated platelet level. The doctor told me to wait and get blood tests done again a few weeks later... so now got results of the blood tests again. wbc and platelets are back within normal range, but lymphocytes remains elevated and now eosinphil level is elevated also. Does anyone know what these things could be caused by?

I am being sent to see an infectious disease specialist next week to rule out lyme disease and also to figure out why my tests are coming back with elevated levels...

Then I am waiting on a referral to go to see a neuro-ophthamologist also.

Fun times...... :roll:
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jimmylegs
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Re: Starting to really dislike doctors

Post by jimmylegs »

hi :) did they give you the actual numbers? as in, are your serum lymphocytes over 3000 per microliter? 4000? eosinophils over 500? if so, by how much?

has anyone referred you to an ms nutrition specialist? there are a few nutrients to review if you happen to have them in your files. do you have serum vit 25(OH)d3, any of the serum vit b complex levels (b1, b2, b3, b5, b6, b9 or b12), serum vit e, serum magnesium, serum zinc, serum copper, serum selenium, serum ferritin? often, nutrients of concern come back 'normal' for ms patients, with the issue being that levels are low to mid normal, consistent with other ms patients, while healthy people's levels would be mid to high normal.

possibly of interest, not related to ms specifically, but to the blood counts:
Zinc Status Modulates Bronchopulmonary Eosinophil Infiltration in a Murine Model of Allergic Inflammation
http://journal.publications.chestnet.or ... 1/446S.pdf
"A 35% increase in BAL eosinophils was observed in the zinc-deficient group (p 0.05, n 25)..."

somewhat contradictory info:
Table 4: Spearman’s correlation (r) between serum micronutrients, serum IgE, eosinophil count, and eosinophil percentage.
http://www.hindawi.com/journals/jbm/2014/106150/tab4/

(for spearman's, a +1 score means perfect positive correlation (ie high nutrient level = high eosinophil level) while -1 score means perfect negative correlation (ie high nutrient level = low eosinophil level)

so basically, when you look at the negative numbers further from zero on that table, eg the nutrients that are low when eosinophils are high, looks like it couldn't hurt to try increasing protein intake, boosting magnesium and magnesium rich foods, also copper and zinc rich foods (since those two are meant to be in balance anyway and best not to just push one higher without doing something for the other)

healthy protein options: http://www.whfoods.com/genpage.php?tnam ... #foodchart
magnesium: http://www.whfoods.com/genpage.php?tnam ... #foodchart
manganese: http://www.whfoods.com/genpage.php?tnam ... #foodchart
copper: http://www.whfoods.com/genpage.php?tnam ... #foodchart
zinc: http://www.whfoods.com/genpage.php?tnam ... #foodchart (consider oysters also - one serving per week)

helps to look not just at the list, but at the amount required to hit minimum recommended daily amounts. if you go for those and a bit extra for a few weeks, could make a pleasant difference in the bloodwork :)
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lyndacarol
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Re: Starting to really dislike doctors

Post by lyndacarol »

dana1985 wrote:So had some blood tests done at the end of January that showed elevated wbc, elevated lymphocytes and elevated platelet level. The doctor told me to wait and get blood tests done again a few weeks later... so now got results of the blood tests again. wbc and platelets are back within normal range, but lymphocytes remains elevated and now eosinphil level is elevated also. Does anyone know what these things could be caused by?

I am being sent to see an infectious disease specialist next week to rule out lyme disease and also to figure out why my tests are coming back with elevated levels...

Then I am waiting on a referral to go to see a neuro-ophthamologist also.
Your serum B12 result of 352 (standard range: 211-946) found in your testing last summer, as reported in your post of January 28, 2015, is in "the gray zone" according to the following book and its authors. (Perhaps your latest B12 result was much higher?)

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:
There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.
Their website: http://b12awareness.org/
The serum B12 test is not very accurate for determining a B12 deficiency because it measures total B12 in the bloodstream. Only the B12 bound to the transcobalamin transport molecule can carry the vitamin into the cells – this is the portion of B12 we want to know; the HoloTranscobalamin test is more accurate in determining a deficiency.

You reported in that same post that doctors had checked for "thyroid disease, Lyme disease, etc.". I hope this included screening for possible gluten sensitivity/celiac disease, since this condition, as well, can manifest with your symptoms, including low levels of nutrients. There are blood tests for screening or even video capsule endoscopy (swallowing the capsule that contains the mini camera).

http://sklad.cumc.columbia.edu/celiacdi ... opathy.pdf

Copper Levels in Patients with Celiac Neuropathy
Micronutrient malabsorption in CD [celiac disease] can lead to deficiencies of iron; vitamins B1, B2, B3, B6, B12, D, and E; copper and calcium, and these deficiencies may lead to systemic complications.
You have listed your location as being in Illinois. If you are near Chicago, you may be interested in the University of Chicago Celiac Disease Center: http://www.cureceliacdisease.org/

In my opinion, there are a few more conditions to be ruled out before an MS diagnosis can be made.
dana1985
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Re: Starting to really dislike doctors

Post by dana1985 »

For the lymphocyte absolute it has the range as 0.7-3.1 10E3/uL and my level was 4.1.

The eosinophil absolute has a range listed of 0.0-0.4 10E3/uL and mine is .6.

My husband did just go and buy me a big bottle of supplements with magnesium, zinc and calcium in it...

Doctor just tried me on another round of steroids too.. It has made the intense eye spasm (totally looked like i was winking all the time or had a crazy tic) decrease but the severe eye pain when looking down hasn't beene effected and the bilaterial leg pain and pain in my arms has been at its worse the past two days...
dana1985
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Re: Starting to really dislike doctors

Post by dana1985 »

They have only tested the b12 once back in August. They seem pretty comfortable that it is not b12 deficiency. So i don't know...

I am not sure if they have looked into celiac disease or gluten. Really hope it is not those either cuz i am too poor to be gluten free. Hehe.

I am close to chicago but i have an hmo and need referrals for everything. It's not impossible to get but i am waiting on my second outside of network referral and it takes forever to get those appointments approved.. Went to see a neurologist at rush hospital in Chicago.. Such a thorough exam but they were more preoccupied with the widespread twitching and ruling out als.

I missed a call from the dr today (a saturday!) and they told me to call back first thing monday... Sooo anxious about why they were calling...
dana1985
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Re: Starting to really dislike doctors

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I know eating better would be great in theory.. But i feel it is impossible with a lower income. I work in social services (not a lucritave job financially) and my husband has been off of work for an injury... So money has been tight. I have even taken an additional part time job to help with bills.

I am open to ideas on how to eat healthier on a very minimal budget and with working two jobs how to cook healthy dinners with minimal amount of time and while already worn out...cuz at the end of the day that frozen lasagna that i can just throw in the oven and walk away and do everything else or shower or sit and relax seems sooo much better...
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jimmylegs
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Re: Starting to really dislike doctors

Post by jimmylegs »

ok so lymphocytes 4000, eosinophils 600. good info. do you have the b12 result from before as well? i'd be interested in seeing whether your level was actually elevated, if it's not low.

if it's any consolation, assuming no issues with celiac whatsoever, if you still wanted to avoid gluten purely to increase nutrient absorption, you could do so cost effectively without buying expensive alternatives to processed grain products.

if you were to post or pm a typical weekly shopping list, i could definitely look for ways you could maximize nutrient density for your dollar, minimize spending on antinutrients, and balance your spending on anti-inflammatory vs pro-inflammatory foods. all while keeping labour to a minimum.

can i ask what the amounts are in the new supplement?
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dana1985
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Re: Starting to really dislike doctors

Post by dana1985 »

My b12 level was 352 back in August.

The new supplement has:
Vitamin D3 200 iu
Calcium 333mg
Magnesium 133mg
Zinc 5mg
Says values are per pill and to take 3 pills a day.

And for diet:

Breakfast is typically Special K cereal. On ocassion a protein shake.

Lunch lately is a yorgurt, banana, granola bar, and pretzels.

Dinner sometimes has a lot of frozen meal components.. Like a bag that comes with pasta, chicken and veggies that i can throw in a skillet for 15 mins, or a frozen lasagna or steak, or maybe frozen box of sweet and sour chicken i can just serve quickly over some brown rice. Last week we had salad (lettuce, carrots, egg, cheese) one night, sloppy joes another night, and a beef stew another night (beef, potatoes, carrots, celery, onions). Sometimes if I am in a hurry or tired it might just be hot dogs and fries, a can of soup, or frozen pizza...

With the loss of my husbands income i have made efforts to cut grocery expenses in half... So i try to only spend 50 dollars a week.. This includes weekly purchases of milk, water, soda (for my husband), yogurt, frozen foods (like those listed above), etc..
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lyndacarol
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Re: Starting to really dislike doctors

Post by lyndacarol »

dana1985 wrote:Doctor just tried me on another round of steroids too.. It has made the intense eye spasm (totally looked like i was winking all the time or had a crazy tic) decrease but the severe eye pain when looking down hasn't beene effected and the bilaterial leg pain and pain in my arms has been at its worse the past two days...
"Another" round of steroids? How many courses of steroids have you had?

According to this article posted by NHE on June 29, 2014: http://www.thisisms.com/forum/natural-a ... ml#p226723

Decreased vitamin B12 and folate levels in the cerebralspinal fluid and serum of multiple sclerosis patients after high-dose intravenous methylprednisolone.

your vitamin B12 level may be decreased after a course of methylprednisolone (steroids). Additional courses may lower your B12 level even more. Could this have resulted in leg and arm pain "at its worst"? This is definitely something to show and discuss with your doctor. If part of the root of your problem is a low B12 level, steroids may actually be worsening the problem by lowering B12 levels even more.
Last edited by lyndacarol on Sat Feb 21, 2015 5:41 pm, edited 1 time in total.
dana1985
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Re: Starting to really dislike doctors

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Think my primary is at a loss and experimenting. When i first went to him for the eye pain in January he had me try a 40 mg dose of predisone for two mornings just to see if it did anything. At that time my eye pain and leg pain had subsided. But within a day of stopping the predisone the pains were back in my eye and legs. Five days ago i started the medrol dose pack and the first three days my eye hurt soo bad still and my legs were about the same. The past two days my eye pain has subsided but the leg pain has increased.
dana1985
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Re: Starting to really dislike doctors

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I think it is tricky because i don't know if things are related or not.. Like is the eye pain related to the leg pain? However i cant help but think they are because they cant find a cause for either... But could the elevated levels in my blood work be related to those issues in anyway?

I try things like the steroids and with it maybe helping one symptom but maybe making another worse..what could that indicative of?

And at what point are there too many variables? Like i am on steroids but also start a vitamin supplement regimen... Then is it the steroids that helped or the vitamins?
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lyndacarol
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Re: Starting to really dislike doctors

Post by lyndacarol »

dana1985 wrote:I think it is tricky because i don't know if things are related or not.. Like is the eye pain related to the leg pain? However i cant help but think they are because they cant find a cause for either... But could the elevated levels in my blood work be related to those issues in anyway?

I try things like the steroids and with it maybe helping one symptom but maybe making another worse..what could that indicative of?

And at what point are there too many variables? Like i am on steroids but also start a vitamin supplement regimen... Then is it the steroids that helped or the vitamins?
I understand your thinking completely. No one knows if the eye pain is related to the leg pain, or if they have two different causes. I believe the elevated levels in your blood could be related to either or both of the pains (in your eye or in your leg).

I also agree with your thinking about changing too many variables at one time. If you take steroids and start taking a vitamin supplement at the same time, and your symptoms improve, you cannot know which one helped the situation. I suggest you talk with your doctor and choose to test ONE course of action at a time.

Since vitamin B12 is not toxic, has no side effects, and is not expensive, this would be my first choice (but may not necessarily be yours).

Steroids are strong drugs with many consequences (such as an increased risk for diabetes, osteoporosis, etc.).

But you need to discuss all this with your doctor.
dana1985
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Re: Starting to really dislike doctors

Post by dana1985 »

I agree. I am nott thrilled with continuing to take steroids. I also know they reduce a persons immune system and ability to fight infection and being winter and working in a field where I am occasionally used as a human tissue... I am thinking vitamins might be a good step...

Guess i do have some confusion though that if these problems are from a vitamin issue then why now? I havent changed my diet.. It's not as though i suddenly became vegan.. I eat the same way i always have.. So why would issues arrise all of a sudden? If i am deficient now i should have been deficient before right? And therefore experiencing problems before?
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