Suggestions for Questions I should ask

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

Suggestions for Questions I should ask

Postby Sued » Sun Nov 25, 2012 5:16 am

Hello, I appreciate that this board is available and any information or suggestions that someone may provide is really appreciated.

First of all, I am a teacher and 38 years old. In June I began experiencing odd symptoms that began to progress and I am in limbo land as far as a diagnosis. Here are my symptoms:

Severe fatigue (debilitating to the point that I sometimes cannot do much more than be in bed or rest. I have tried nuvigil and provigil to help with fatigue - neither have helped. I have been diagnosed with "narcolepsy" but my doctor was reluctant since it was when I was 37 years old (usually shows up earlier). I do not have the typical symptoms but definitely have excessive daytime sleepiness and it inhibits me from doing my job as well I as I would like to (high school teacher).

In June I went to the ER with a severe headache, knee joint issues (right leg also giving out when walking) they treated me for a migraine and let me go (I had been experiencing severe head pain since a sinus surgery in January). I asked my PCP for a Lyme test, and he also performed the ususal autoimmune tests and all were clear except my ana was a bit high and my crp too (but we didn't make much of it.)

In early July I developed true vertigo which turned into plain imbalance/dizziness. My ENT's office did a VNG test which showed possible peripheral or central involvement. I was sent to the neurologist.

By the time I went to the neurologist I realized that I had been falling quite a bit the last year when teaching. And I also realized that I couldn't stand without swaying, often my feet would trip up with near falls when talking and walking. At that point I began to experience left arm and hand tingling (at one point went to my jaw). It also went to my left leg and foot. My foot was also tingling and soles of the feet sometimes itchy (same with palms of hands).

I went to the neurologist (who did my sleep study) and he basically said all my symptoms were vague and that he would give me a brain mri. I asked if it would be with contrast and he said yes. It was an open MRI 1.2 Tesla. He was quite dismissive and was shocked that I knew about the Rhomberg test. I also felt odd since I was on Cymbalta and he made a point to emphasize it in my history... (the ER in June did as well). I didn't even bring up the fact that I realized I was having trouble with my memory (remembering phone number, address, etc....) I decided that I would see him for the test, but if anything continued go elsewhere...

At one point over the month the tingling went to my right leg. I saw my regular PCP who got the results back from my MRI and said they were normal. I had been prescribed gabapentin (neurontin) for headaches in the past but was reluctant to take it, but now I began the regime, and today I am up to 1200 mg (at night).

My headaches stopped (awesome) as well as my sinus pain. But the tingling continued and stressed that I would be going back to school fatigued, dizzy and tingling I went back. At that point I was pretty stressed (as I had dealt with chronic pain from headaches and sinus surgeries (5) for the last 12 years) I was sick of being sick. And the previous year a parent was critical of my absence after sinus surgery so I was very nervous about work. I wanted to be well.

We did another Lyme (negative again), more autoimmune and I pressed for a cortisol test (I had been insufficient 4 years prior). My b12 came back low and I went through a month of shots. I also upped my vitamin D. Then I asked for a spine mri (they agreed to a cervical and I pressed for the rest so they agreed to thoracic as well (because to calm my anxiety about work).

MRI's came back basically normal - I had very minor herniation and some tarlov cysts as well (and some other incidental cyst).. (although the thoracic was hard to read b/c of my CSP). (they were done w/ and w/o contrast as I had to reschedule because it wasn't ordered that way - I knew my lingo at this point because I was fruastrated).

I went back and my Cortisol and Aldosterone were high so now they were looking into a possible tumor on my adrenal gland (which could cause my symptoms as well). The CT scan came back negative along with the blood test which now showed one hormone still high. I mentioned that my blood pressure has been high since last spring and no one ever spoke to me about it so they put me on blood pressure meds and basically been watching me....

Presently I still have tingling to the point that it burns (only once). There have been days where I cannot sleep as a result (or have difficulty). Also, my left thigh has lost sensation (truly, but not numb - for the past week). I am really perplexed now. My pcp doesn't know about the loss of sensation but they are sending me to have them set up an EMG test and I am going tomorrow.

Right now I am faced with feet that tingle (both sides, but mostly my left). The tingling is only on my left (it has gone to my jaw one more time but has subsided). I have also had 4 bouts of short term double vision (under an hour) which the opthamologist said my eyes are fine (see the neurologist). My left thigh is "numb" (lost some sensation) and I get dizzy when hot (I realized this during the summer). I have such fatigue that I am having to decide if I should go grocery shopping or take care of my three year old son or even if I can cook. My tingling basically doesn't go away- it did subside for a bit, but came back a few weeks ago (with burning pain which now is just plain uncomfortable tingling - I am really uncomfortable driving and any type of standing). I teach and I am desperate to be somewhat "normal". I have already had to take 4 days because I felt so horrible. My husband is stressed and really wonderful but it is impacting my marriage as well as he is getting stress headaches.

I go on Monday for the EMG and my PCP said if it didn't show anything that I would be referred to an academic hospital setting. He politely (and gently) told me to be a patient (said I was intelligent but that I need to stop diagnosing myself). I agree, but I feel like knowledge is power and it makes me feel comfortable knowing something. I'm desperate for anything a tumor, something! It's sad to think that... Anyways, any suggestions you can give to me to ask the neurologist would be helpful and any other suggestions.

I apologize for writing a book. I just want to feel better and appreciate any advice.

Sue
Sued
Newbie
 
Posts: 3
Joined: Sun Nov 25, 2012 4:26 am

Advertisement

Re: Suggestions for Questions I should ask

Postby MarkLavelle » Sun Nov 25, 2012 11:33 am

Sued wrote:I go on Monday for the EMG and my PCP said if it didn't show anything that I would be referred to an academic hospital setting. He politely (and gently) told me to be a patient (said I was intelligent but that I need to stop diagnosing myself). I agree, but I feel like knowledge is power and it makes me feel comfortable knowing something. I'm desperate for anything a tumor, something! It's sad to think that... Anyways, any suggestions you can give to me to ask the neurologist would be helpful and any other suggestions.
In my opinion, you should jump at the chance to go to an academic hospital. There's no way your PCP can get to the bottom of this. Among other considerations, you could be having two or more completely unrelated problems (I do) and need a whole team to figure that out.

AND: You should stop diagnosing yourself! :wink: There's no chance that you actually know enough (or can learn it from the Internet) to do more than guess, and bad guesses can make you even more miserable...

RRMS dx 3/3/11; Copaxone since 12/1/11
MarkLavelle
Family Elder
 
Posts: 178
Joined: Sat Dec 17, 2011 9:08 pm
Location: San Francisco Bay area

Re: Suggestions for Questions I should ask

Postby lyndacarol » Sun Nov 25, 2012 11:52 am

Welcome to ThisIsMS, Sue. I offer you my standard action plan suggestion, since you repeatedly say that input will be appreciated:

First, take a deep breath. You have found many supportive friends at this site. We are here to help in any way we can. We come from diverse experiences and hold diverse ideas. We do not necessarily agree with each other in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

MY personal suspicion is that too much insulin starts the MS cascade. A woman's body produces more insulin during pregnancy in order to put weight on the baby she carries. It is my opinion that her body does not always stop producing insulin immediately when the child is born; perhaps your pancreas DID return to normal production, but now has become dysfunctional due to diet, bacterial influence, any number of reasons– producing too much insulin in either scenario. The hormone insulin is caustic and irritates the inside of blood vessels (especially the small ones first – in the eyes, capillaries everywhere including extremities) – I think this causes the tingling (a "raw" or "sunburned" feeling) I have in my legs and feet.

Solu-Medrol is a glucocorticosteroid which is often prescribed for MS symptoms; I know it elevates blood sugar and temporarily engages or occupies the insulin, reducing the amount of both in the bloodstream. In my opinion, this is the mechanism that explains MS symptom improvement with Solu-Medrol. During this time the pancreas MAY reset to secrete a proper amount – adequate to handle glucose, but not in an excess amount. (Solu-Medrol has not been effective for me. My pancreas chronically secretes TOO MUCH insulin; I suspect that yours does too.)

Cortisol also elevates blood sugar and the body produces more insulin in response. In your case it may be that your elevated levels of cortisol are prompting your pancreas to overproduce insulin.

I think this imbalance of the hormone insulin causes other hormone imbalances – possibly thyroid hormones. Has your PCP checked your thyroid gland? Brittle or thinning hair (hair loss) is one of the signs of a problem in the thyroid gland (underactive thyroid a.k.a. hypothyroidism). Other symptoms can include feeling tired (unrelenting fatigue), cold all the time, memory loss, brittle nails, leg swelling, constipation, loss of the outer third of eyebrows, difficulty losing weight because of slow metabolism. Could this be a possibility for you? A simple home test can also indicate underactive thyroid: if you take your basal body temperature (in the morning before getting out of bed) every morning for a week and it is consistently below 98°, you may have an underactive thyroid. I recently came across the following information: "Many medications also slow down the thyroid and also cause iodine deficiency. Lithium and corticosteroids [Solu-Medrol and prednisone] are thyroid-slowing and should be used sparingly if at all."

The thyroid and iodine deficiency was discussed recently on The Dr. Oz Show with Dr. Andrew Weil: http://www.doctoroz.com/episode/andrew- ... ideo=15632 "Puffy eyes" as pictured in video are another symptom of a thyroid problem.

My recommendations for discussion with your PCP (probably more receptive to possibilities outside of neurology than your neurologist): a request for a "fasting blood insulin test" and a series of thyroid hormone blood tests (TSH, Free T4 , Free T3 , Total T3, Reverse T3, and antithyroid antibodies) and investigation for possible Fatty Liver Disease. If your doctor says your blood tests are fine, please realize that most thyroid tests aren't articulate enough always to catch the problems – watch your symptoms closely; they can be a better gauge. The optimal insulin test result should be 3 UU/ML or lower.

From this day forward, I encourage you to eat a healthy diet (a good idea for your whole family). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar and trigger insulin production), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. I think that excess insulin plays a great part in MS and suspect that Fatty Liver Disease is also involved. Diet is important. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

All the best to you. Keep asking those questions; you are absolutely right – knowledge is power. Remember, we are here for you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
User avatar
lyndacarol
Family Elder
 
Posts: 2317
Joined: Thu Dec 22, 2005 4:00 pm

Re: Suggestions for Questions I should ask

Postby Sued » Sun Nov 25, 2012 4:35 pm

Thank you both for your replies. I don't know if I'll ever stop researching (I love it too much and since I teach history I'm a bit too proficient in finding good academic journals and the like. Who knew that vitamin b12 could have so many neurological impacts? I didn't realize the extent until this summer. And all the controversies over Lyme, etc.. It really fascinates me and if i could go back to school i would think about the medical fueld! :-)

I've felt like it has made certain things i knew very little about less of a mystery. I have been fortunate that so far my hunches have been good (adrenal glands, checking the assistant physicians directions on blood tests and asking radiology techs about how tests were ordered - one time incorrectly). Doctors are just as human as we are, so i enjoy being part of a conversation. But I do get that I will never figure it out without a good diagnostician and team. I have a great group of doctors now, but they are running out of suggestions. We'll see what happens tomorrow and wait for the results later this week.

I will definitely look into diet and other glucose testing. I have had several thyroid tests but as you say many of the criteria established by the different labs do not consider ranges for individuals (much like Lyme tests are very narrow in scope and even b12 levels normal range per labs may be enough to cause parathesias in many people. Like it wasn't difficult enough for people to understand... :-)

Thank you for your candid and helpful advice. I can only do one day at a time but my journey really has only compared as many look for years without a diagnosis. It's too bad so many illnesses mimic each other - but that also may suggest a lot too.

Okay, enough books for today. I wish you all well. :-) sue
Sued
Newbie
 
Posts: 3
Joined: Sun Nov 25, 2012 4:26 am

Re: Suggestions for Questions I should ask

Postby lyndacarol » Sun Nov 25, 2012 5:22 pm

Sued wrote:...
I will definitely look into diet and other glucose testing.


Just to clarify: "glucose" testing is good (and easy with just a finger prick); I was suggesting a completely different test, a "fasting blood INSULIN test" – requiring a blood draw in the lab – if the sample will not be analyzed immediately or in short order, the sample should be frozen because insulin in the sample will degrade quickly and results will not be accurate.

We are interested to hear how things go for you – even the test result numbers, if you are willing to share.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
User avatar
lyndacarol
Family Elder
 
Posts: 2317
Joined: Thu Dec 22, 2005 4:00 pm

Re: Suggestions for Questions I should ask

Postby Sued » Sun Nov 25, 2012 6:42 pm

Yes, absolutely ( the blood insulin fasting). I wouldn't do it otherwise. I actually had the test a month ago, so this would be easy to access. Thanks again!! :-)
Sued
Newbie
 
Posts: 3
Joined: Sun Nov 25, 2012 4:26 am


Return to Undiagnosed

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service