Frustrated with no diagnosis

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Post Reply
readingcrew
Newbie
Posts: 5
Joined: Tue May 10, 2016 1:34 pm

Frustrated with no diagnosis

Post by readingcrew » Tue May 10, 2016 1:57 pm

Hi,
I had anxiously awaited an appt on Monday following a long 2 months of testing but ended up with no answers :sad: . I have had a wide variety of symptoms,most of which since January and many of which are "MS-like" so my PC doc referred me to a neurologist. The following are my symptoms which recur at least once a month and last 1-3 days each time:

Tingling
Left side of face: Tip of nose, top lip, eyelid (occasionally on right side)
-began on 1/12 for one day then returned on 1/29
-Will be intense for 1-3 days then intermittent but occurs at least once a day
-Lasts for seconds

Stabbing Pains
Left side of head; right top of head; ears
-More intense when tingling is more intense
-Lasts for seconds
-Daily

Vision
Blurry vision in left eye since the tingling began; was worsening at first but has now stabilized
Left eye seems to tire easily, waters
When I look to the side, eye seems to jump /trouble parking
Sometimes have stabbing pain in left eye
Keep getting sudden feeling of something in left eye, especially inner corner

Finger and Hand Pain/Stiffness/Tingling
Left index finger
-On the day that the intense facial tingling began on left side, index finger
was sore and could not bend it at all for hours.
-Will get stabbing pains in that finger; always coincides with tingling in face
Right index finger
- When intense facial tingling began on left side, index finger was sore and
could not bend it at all for hours.
-Will get stabbing pains in that finger
-Occasional
Hand Tingling (whole hand) *Nerve conduction studies revealed mild carpal tunnel and ulnar nerve pinching
-Whichever side I wake up on, that hand is tingling and numb. Lasts for 1-2
minutes after I change positions.
-Daily
Often feel like fingers don’t work right; frequently cut fingers

Shoulder/Neck Pain/Stiffness
Began with right shoulder/neck pain last March. Underwent 10 weeks of PT before getting an MRI on right shoulder. PT included heat, massage, manipulation, stretching, strengthening, stim and ice. Cortisone shot in early August with some relief of shoulder pain. I continue the stretching and exercises daily.
Left shoulder pain has increased since October.
Neck has been stiff since last March.

Headache
Dull, daily headache began last March with shoulder and neck pain. Lasts throughout the day/night. Typically at the top or back of head; Decreased somewhat with PT and following cortisone shot.
Minimal response to pain relievers
Diagnosed with cervicogenic headache

Occasional difficulty with swallowing pills (modified barium swallow revealed no problem; mild delay at start of swallow)

Frequent Urination/Incontinence
Almost every hour during the day; go 2-3 times at night
Can go to the bathroom and 2 minutes later, sneeze and have leakage
Took Vesicare for 2 weeks-no change

Hearing Loss
Began about 2 years ago and has slowly worsened
Audiologist said it is sensorineural loss
Occasional ringing in ears

Fatigue (daily for months; some days are better than others)

Muscle Weakness
Primarily in legs/thighs--not sure if this is due to lower back issues
Difficulty going up steps and exercising
Daily

Mental fog/Memory/Confusion
Frequently feeling like I am in a fog
Have to ask people repeat themselves (hearing, processing, attention?)
Randomly forgetting numbers that I have always known (account, phone)
Will walk into store/room and not have a clue what I am looking for
Trouble finding words

Hand Tremor: Now have a mild tremor when reaching with right hand

I have had lab work (autoimmune, rheumatoid, vitamin/mineral deficiencies, variety of neurological disorders), MRA, MRV, MRI Brain, MRI spinal survey, EEG, EMG, nerve conduction study, blink reflex test, memory testing. All testing normal. Neuro said since no lesions present (even though there was a change from last year in "deep white matter") and all testing normal, I am fine. I asked for some explanation for the intermittent tingling in face that recurs at least once a month for 1-3 days and she had no answer except for maybe a mild neuropathy in the small nerves that she could do a biopsy on. She suggested that I keep a diary of symptoms. She said she could refer me to another neuro in the practice for the tremor as she specializes in epilepsy.

So, after all of that, my question is...Do I just go on and assume it is nothing or do I look further somewhere else? I feel like a hypochondriac but I know my symptoms are real. I'm 100% fine with it not being MS but I feel like there should be some explanation. Thank you for your patience with my lengthy post and your time.

User avatar
lyndacarol
Family Elder
Posts: 3392
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Frustrated with no diagnosis

Post by lyndacarol » Tue May 10, 2016 5:12 pm

readingcrew wrote:I have had lab work (autoimmune, rheumatoid, vitamin/mineral deficiencies, variety of neurological disorders), MRA, MRV, MRI Brain, MRI spinal survey, EEG, EMG, nerve conduction study, blink reflex test, memory testing. All testing normal. Neuro said since no lesions present (even though there was a change from last year in "deep white matter") and all testing normal, I am fine. I asked for some explanation for the intermittent tingling in face that recurs at least once a month for 1-3 days and she had no answer except for maybe a mild neuropathy in the small nerves that she could do a biopsy on. She suggested that I keep a diary of symptoms. She said she could refer me to another neuro in the practice for the tremor as she specializes in epilepsy.

So, after all of that, my question is...Do I just go on and assume it is nothing or do I look further somewhere else? I feel like a hypochondriac but I know my symptoms are real. I'm 100% fine with it not being MS but I feel like there should be some explanation. Thank you for your patience with my lengthy post and your time.
Welcome to ThisIsMS, readingcrew.

First of all, I commend you for your thorough list of symptoms. Also, your investigation so far into the cause of your symptoms has been very complete.

In my opinion (I have no medical background), you are NOT a hypochondriac; your symptoms are absolutely real! The suggestion of keeping a diary or journal of symptoms is a good idea.

The problem with your collection of symptoms is that they are found in many conditions, which need to be tested and ruled out one by one. (There is no definitive test for MS; other possible causes for your symptoms must be ruled out before MS can even be considered.) You need a doctor (GP or specialist) you trust, one who enjoys being a "disease detective"– your current neuro seems to prefer epilepsy; if you cannot find a neuro in the practice with whom you feel comfortable and confident, you may have to look outside the practice for someone. There IS an explanation for your symptoms – the only course of action I can suggest is to be strong and continue to look further for the answer.

You have said that testing for possible vitamin deficiencies came back normal. This is a particular interest of mine at the moment. I am curious about your lab work.

If you had the initial testing for a B12 deficiency, do you have the actual number results for #1 a serum B12 test, #2 the RBC folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test? The serum B12 test alone is often inadequate to uncover a B12 deficiency. In the US, the labs have established standard reference ranges for the serum B12 that many experts consider to be too low. What was the standard range at the lab that performed your test?

If a serum vitamin D test (the 25-hydroxy D test) was done, would you share the actual number result with us? What reference range was used for that test? (I was tested in January and found to have a low level of 24 ng/ml. My lab reference range was 30-100. Some neurologists recommend that people with neurological symptoms should reach and maintain 80-100 ng/ml.)

Either a B12 deficiency or a vitamin D deficiency can manifest with the symptoms you have.

readingcrew
Newbie
Posts: 5
Joined: Tue May 10, 2016 1:34 pm

Re: Frustrated with no diagnosis

Post by readingcrew » Tue May 10, 2016 6:16 pm

Thank you for your quick reply. I do not have the ranges but I am going to request my records. I was only verbally told all of my results. I will post as soon as I get them.

readingcrew
Newbie
Posts: 5
Joined: Tue May 10, 2016 1:34 pm

Re: Frustrated with no diagnosis

Post by readingcrew » Wed May 11, 2016 2:33 am

I have also been taking a Vitamin D supplement of 50,000IU for the past 3 years. I am not sure of my current level.

I am a type 2 diabetic that has been well under control for more than 5 years. My A1C has been between 6.0 and 6.2 during that time.

ElliotB
Family Elder
Posts: 1951
Joined: Mon Feb 03, 2014 4:08 pm

Re: Frustrated with no diagnosis

Post by ElliotB » Wed May 11, 2016 6:25 am

Just because you don't have a diagnosis yet, doesn't mean you can't treat yourself. There is a wealth of information on this site and on the web as to things you can do to improve your conditions with regard to diet, exercise, supplements and lifestyle change.

You can feel/do better without a diagnosis! But yes, you should continue trying to get one. Seek out other doctors.

User avatar
lyndacarol
Family Elder
Posts: 3392
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Frustrated with no diagnosis

Post by lyndacarol » Wed May 11, 2016 7:34 am

readingcrew wrote:I have also been taking a Vitamin D supplement of 50,000IU for the past 3 years. I am not sure of my current level.

I am a type 2 diabetic that has been well under control for more than 5 years. My A1C has been between 6.0 and 6.2 during that time.
This information makes me REALLY curious now.

I assume that a doctor directed you to take 50,000 IU of vitamin D because you were tested 3 years ago and found to be deficient. Am I correct? Do you have access to the test result at that time? (Many people are aghast at the suggestion 50,000 IU – they believe it must surely cause toxicity. I am NOT of the same opinion! Vitamin D expert, Reinhold Vieth, did a study of number of years ago, giving 40,000 IU daily to people with MS – with no toxicity resulting; Brazilian neurologist, Cicero Galli Coimbra, is giving MANY more times this daily amount to people with MS.)

There are many studies showing a direct tie between diabetes and low vitamin D.

readingcrew
Newbie
Posts: 5
Joined: Tue May 10, 2016 1:34 pm

Re: Frustrated with no diagnosis

Post by readingcrew » Wed May 11, 2016 9:05 am

June, 2013
Vit D, 25-Hydroxy 30.0 - 100.0 ng/mL 30.0
Vitamin B-12 211 - 946 pg/mL 799

These are the only test results I could pull up on my chart as I use a different lab now and it doesn't load on my online chart. This is when I started the Vit. D supplement. I have repeatedly been tested for hypothyroidism and lymes but always negative. I do have history of Epstein Barr although I'm not sure when that occurred; it just shows that I have had a past infection.

User avatar
lyndacarol
Family Elder
Posts: 3392
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Frustrated with no diagnosis

Post by lyndacarol » Wed May 11, 2016 11:12 am

readingcrew wrote:June, 2013
Vit D, 25-Hydroxy 30.0 - 100.0 ng/mL 30.0
Vitamin B-12 211 - 946 pg/mL 799

These are the only test results I could pull up on my chart as I use a different lab now and it doesn't load on my online chart. This is when I started the Vit. D supplement. I have repeatedly been tested for hypothyroidism and lymes but always negative. I do have history of Epstein Barr although I'm not sure when that occurred; it just shows that I have had a past infection.
In June, 2013, your 25-hydroxy D level (30 ng/mL) was low. Your doctor was very good to prescribe 50,000 IU. He should have continued to monitor your level to be certain you reached and maintained a more optimal value. More and more vitamin D experts are recommending routine testing twice a year – peak and trough – even for people without symptoms.

It would be interesting to know your recent or current Vit D status. Even suddenly bumping vitamin D back up to optimal levels does not immediately correct the body system affected by deficiency. It simply takes a while for the body to heal the system that was compromised by vitamin D deficiency…… this is assuming that vitamin D is the source of your problem – it could be something else entirely.

(By the way, vitamin D is crucial for the proper functioning of the thyroid gland; some experts think thyroid function is one of the first systems to be affected by D deficiency. I think this is usually hypothyroidism; but, in my opinion (remember, I have no medical background) this could also be hyperthyroidism.… another thyroid dysfunction.) If you have been repeatedly tested for hypothyroidism, I am led to believe that your doctors thought something might be going on there.


As for your B12 level (799 pg/mL), in 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, if you're interested in reading.): http://b12awareness.org/could-it-be-b12 ... diagnoses/ the authors recommend that the level should be greater than 550; your B12 value appears to be acceptable to them.

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.

User avatar
NHE
Volunteer Moderator
Posts: 5450
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Frustrated with no diagnosis

Post by NHE » Wed May 11, 2016 11:37 pm

readingcrew wrote:I have also been taking a Vitamin D supplement of 50,000IU for the past 3 years. I am not sure of my current level.
Is that vitamin D2 or the D3 form? The 50,000 IU dose is typically given as D2. However, D3 is the natural form in our bodies and, according to the following paper, D2 can drive down levels of D3.


Vitamin D2 is much less effective than vitamin D3 in humans.
J Clin Endocrinol Metab. 2004 Nov;89(11):5387-91.
  • Vitamins D(2) and D(3) are generally considered to be equivalent in humans. Nevertheless, physicians commonly report equivocal responses to seemingly large doses of the only high-dose calciferol (vitamin D(2)) available in the U.S. market. The relative potencies of vitamins D(2) and D(3) were evaluated by administering single doses of 50,000 IU of the respective calciferols to 20 healthy male volunteers, following the time course of serum vitamin D and 25-hydroxyvitamin D (25OHD) over a period of 28 d and measuring the area under the curve of the rise in 25OHD above baseline. The two calciferols produced similar rises in serum concentration of the administered vitamin, indicating equivalent absorption. Both produced similar initial rises in serum 25OHD over the first 3 d, but 25OHD continued to rise in the D(3)-treated subjects, peaking at 14 d, whereas serum 25OHD fell rapidly in the D(2)-treated subjects and was not different from baseline at 14 d. Area under the curve (AUC) to d 28 was 60.2 ng.d/ml (150.5 nmol.d/liter) for vitamin D(2) and 204.7 (511.8) for vitamin D(3) (P < 0.002). Calculated AUC(infinity) indicated an even greater differential, with the relative potencies for D(3):D(2) being 9.5:1. Vitamin D(2) potency is less than one third that of vitamin D(3). Physicians resorting to use of vitamin D(2) should be aware of its markedly lower potency and shorter duration of action relative to vitamin D(3).
Image

Image

User avatar
lyndacarol
Family Elder
Posts: 3392
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Frustrated with no diagnosis

Post by lyndacarol » Thu May 12, 2016 11:10 am

readingcrew wrote:I have also been taking a Vitamin D supplement of 50,000IU for the past 3 years. I am not sure of my current level.

I am a type 2 diabetic that has been well under control for more than 5 years. My A1C has been between 6.0 and 6.2 during that time.
I came across this today; it may interest you, too:

Vitamin D and Diabetes
http://spectrum.diabetesjournals.org/co ... ef-ref-1-1
Mechanisms of action

There is growing evidence that vitamin D deficiency could be a contributing factor in the development of both type 1 and type 2 diabetes. First, the β-cell in the pancreas that secretes insulin has been shown to contain VDRs as well as the 1 alpha hydroxylase enzyme.46 Evidence indicates that vitamin D treatment improves glucose tolerance and insulin resistance.47,48 Vitamin D deficiency leads to reduced insulin secretion. Supplementation with vitamin D has been shown to restore insulin secretion in animals.49 Researchers have also found an indirect effect on insulin secretion, potentially by a calcium effect on insulin secretion. Vitamin D contributes to normalization of extracellular calcium, ensuring normal calcium flux through cell membranes; therefore, low vitamin D may diminish calcium's ability to affect insulin secretion.50 Other potential mechanisms associated with vitamin D and diabetes include improving insulin action by stimulating expression of the insulin receptor, enhancing insulin responsiveness for glucose transport, having an indirect effect on insulin action potentially via a calcium effect on insulin secretion, and improving systemic inflammation by a direct effect on cytokines.50

Vitamin D and type 2 diabetes

After conducting a meta-analysis and review of the impact of vitamin D and calcium on glycemic control in patients with type 2 diabetes, Pittas et al.50 concluded that insufficient vitamin D and calcium appears to hinder glycemic control and that supplementing both nutrients may be necessary to optimize glucose metabolism. An observational study from the Nurses Health Study51 that included 83,779 women > 20 years of age found an increased risk of type 2 diabetes in those with low vitamin D status.

User avatar
lyndacarol
Family Elder
Posts: 3392
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Frustrated with no diagnosis

Post by lyndacarol » Thu May 12, 2016 12:22 pm

readingcrew wrote:June, 2013
Vit D, 25-Hydroxy 30.0 - 100.0 ng/mL 30.0
Vitamin B-12 211 - 946 pg/mL 799

These are the only test results I could pull up on my chart as I use a different lab now and it doesn't load on my online chart. This is when I started the Vit. D supplement. I have repeatedly been tested for hypothyroidism and lymes but always negative. I do have history of Epstein Barr although I'm not sure when that occurred; it just shows that I have had a past infection.
To my knowledge, I have not had Epstein-Barr virus. (I do have the MS diagnosis.) However, many people are convinced of a link between EBV and MS. (I am NOT saying that you have MS.)

Risk factors for multiple sclerosis: decreased vitamin D level and remote Epstein-Barr virus infection in the pre-clinical phase of multiple sclerosis (2012)
http://www.ncbi.nlm.nih.gov/pubmed/22906614

Abstract:
A number of environmental and genetic factors are implicated in the complex aetiology of multiple sclerosis (MS). Among several types of environmental risk factors that have been considered, the major factors are thought to be low vitamin D concentration and Epstein-Barr virus (EBV) infection. Among vitamin D metabolites, 25-hydroxyvitamin D (25(OH)D) has been widely used to determine vitamin D status, and a large prospective study demonstrated an inverse correlation of 25(OH)D levels with the risk of MS among whites, which was particularly strong for 25(OH)D levels measured before 20 years of age.1 EBV is a B-lymphotropic herpesvirus that establishes persistent latent infection …


Full text of this article requires payment. If you are near a med school library, it may be available to you there free of charge.

readingcrew
Newbie
Posts: 5
Joined: Tue May 10, 2016 1:34 pm

Re: Frustrated with no diagnosis

Post by readingcrew » Thu May 12, 2016 1:53 pm

That is very interesting. I am awaiting copies of my labs. I'm hoping that may shed some light on it. Thanks again for your help!!!

Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Undiagnosed”