MS Symptoms

[mrjohnburns]

Dear Friends,

I am a 37 yo Irish male. I developed diabetes (T2 w Insulin) in 2005 and is generally well managed. I was told that my initial symptoms (every conceivable & awful pain sensation in my feet with numbness & body fatigue) was due to diabetes which caused peripheral neuropathy. I found great pain med combos and managed and still do manage my diabetes relatively well to this day.

Skip to 2013 and I find out I have an asymptomatic lung disease called sarcoidosis but told it will go off its own accord and no treatment was necessary. A routine lung scan showed liver problems and a biopsy confirmed that sarcoidosis has caused liver cirrhosis at an early stage but thankfully no treatment needed but like the lungs its monitored closely. 2015 a skin biopsy confirms skin sarcoidosis.

June 2015 I had to quit work due to bad fatigue and I'm still out. Mid 2015 start 2016 some new symptoms develop which is why I'm here to seek advice from your own experiences. I'm told that one you have one auto immune disease your very much open to others and MS is an auto immune disease, I believe?

New symptoms in order of first appearance:

1.) Mid 2015: Started to experience one of my eyes going very blurry which can last for a few hours and then completely go only to come back another day in the opposite eye but always one eye at a time, I wear glasses full time and had a recent eye test for new lenses and no problems were detected. Intensity has increased to date.
I also started to have trouble with severe aches in legs and can hardly move, sometimes feels like I've done a massive workout in the gym with the muscle stiffness. But this comes and goes, some days I feel fine.

1.5) End 2015: Started to get awful pains in my fingers, hands, arms, legs and feet like stabbing, burning, tingling, pin prick, needle etc Hands very bad though. Started stronger opiates in May which have really helped but there are still days when I'm in pain.

2.) Jan 2016 to present: I notice on my calf muscles lots of minute twitching in both legs, not painful but looks pretty weird, seldomly they are strong enough to initiate a full calf spasm.

3.) March 2016 to present: Hand tremors especially when holding my phone or something similar.

4.) April 2016 to present: obvious jerks of my limbs which has increased in intensity, others have also noticed this. They seem to be getting stronger especially in my legs. Also Numbness in my hands. I'm constantly finding cuts on my hands and don't know where they came from. Ive so many scars on my hands from the last few months alone than I have from my entire life.

5.) April 2016 to present: every few days I seem to drag my right foot when walking, doesn't happen all the time but when it does it will happen a few times in a day. (Note: My right lower leg looks a lot thinner than my left leg, maybe nothing but important to mention.)

6.) May 2016 to present: On occasion I notice strange sensations, for example, I will be going to use my finger to type on my iPad and there feels like there is a problem in trying to do this like a feeling of delay, it's so so weird, i must sound crazzzyyyy.

7.) Last two weeks: I've always suffered a little with depression but over the last two weeks and last Thursday especially I was watching a comedy from the 80's. When it finished I was so sad it's hard to describe. I felt a huge emptiness in knowing that one of the actors was dead and the other is very old. It was a sadness like as if someone I knew had died. The emptiness was so bad. I cant explain why this happened and something similar happened two weeks ago too. I've never experienced anything like this and has really scared me. My mood is up and down as well.

8.) lots of headaches too with tingling sensations on my face and scalp.

That's it, so sorry for the length of this message but I want to be accurate and to see if anybody thinks this might be MS (my wife does based on symptoms) I know people here can't diagnose me but I just want to get their thoughts and advice. My diabetic doctor has booked me in for nerve conduction tests and some other test but it's in October. Also my Sarcoidosis doc is booking me in for a brain MRI but probably won't be until 2017 with the huge delays in our public hospitals in Ireland. Those tests will shed some light, I hope.

Thank you all very much.

John

[Snoopy]

Have you spoken to your Dr. about your symptoms? Sarcoidosis is one of the many conditions that can mimic Multiple Sclerosis. Sarcoidosis can cause all of the symptoms you are experiencing. Information about Sarcoidosis: https://www.stopsarcoidosis.org/awarene ... rcoidosis/

[lyndacarol]

I want to be accurate and to see if anybody thinks this might be MS (my wife does based on symptoms) I know people here can't diagnose me but I just want to get their thoughts and advice. My diabetic doctor has booked me in for nerve conduction tests and some other test but it's in October. Also my Sarcoidosis doc is booking me in for a brain MRI but probably won't be until 2017 with the huge delays in our public hospitals in Ireland. Those tests will shed some light, I hope.

Welcome to ThisIsMS, John (mrjohnburns).

I commend you on your well-organized post with its well-explained details. You are correct that people diagnosed with one autoimmune disease are often diagnosed with a second, or even a third autoimmune disease.

Since you have asked for our thoughts and advice on whether "this might be MS," I will offer you mine (I have no medical background).

Your symptoms are consistent with many conditions, which must be ruled out before an MS diagnosis can be considered. MS is a diagnosis of exclusion – there is no definitive test for it.

You have been diagnosed with peripheral neuropathy, which is often due to diabetes (which is probably your case according to your doctor). This symptom is found in many other conditions, as well.." In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

It is a good course of action for ruling out some of the possible causes for your other symptoms, too. Or perhaps these conditions have already been investigated?

Expanding on the initial testing for possible vitamin B12 deficiency (which could very definitely be a cause of some of your symptoms), I wonder if you have had other nutrient testing – especially since you are in Ireland, I wonder if you have had a simple, inexpensive vitamin D blood test (the "25-hydroxy D" test). Vitamin D is required by every cell, every system, and organ in the body (so every one of your symptoms – even depression and headaches – could result from a long-term vitamin D deficiency). Over 1/2 the world's population is deficient in vitamin D.

It would be a shame to overlook this possibility. At your next scheduled doctor's appointment (or call your GP today – ANY doctor can order this test), I urge you to request the 25-hydroxy vitamin D test (and request your own copy of the results – it is important to have the actual numbers). Some neurologists in the US are recommending vitamin D levels be in the high end of the standard reference range – 80 to 100 ng/mL. I believe nmol/L is the unit of measurement in Europe – Vitamin D (25-Hydroxyvitamin D): ng/mL X 2.496 = nmol/L.

We wish you the best; please let us know how it goes.

[mrjohnburns]

Dear Lynda,

Thanks for your informative reply. There is plenty of useful information there, thank you. On the blood tests front I believe my vitamin B12 is fine as this is a marker in my liver function tests I regularly get. Vitamin D is an interesting one as it's often found in excess in patients with Sarcoidosis, me included, and can make Sarcoidosis symptom worse, therefore they tell us Sarcoidosis patients to limit sunlight and products high in Vit D, also to much protein is bad too!

I guess my tests I'm waiting on will help to get me closer to finding out what maybe going on.

I will take the recommended blood tests you provided and show my docs to see what they think. I've had so many blood test in the last year that I think they may have covered most of them but I will double check.

Thanks again for taking time to reply and I will of course update you on any news.

Thanks,

John

[lyndacarol]

On the blood tests front I believe my vitamin B12 is fine as this is a marker in my liver function tests I regularly get. Vitamin D is an interesting one as it's often found in excess in patients with Sarcoidosis, me included, and can make Sarcoidosis symptom worse, therefore they tell us Sarcoidosis patients to limit sunlight and products high in Vit D, also to much protein is bad too!

There is much controversy among experts over lab reference ranges for vitamin B12 and what cutoff point determines insufficiencies/deficiency. Can you share with us the actual number value of your latest serum B12 test and the standard range used by the lab?

I have not heard of this finding of excess vitamin D in patients with sarcoidosis. Could you supply me with a link to sources (so that I can learn more about it)? By the way, you say that you have excess vitamin D… What is that level precisely?

The California-based GrassrootsHealth (http://www.GrassrootsHealth.net) focuses, of course, on the worldwide deficiency; according to them, "excess" (unless possibly more than 300 ng/mL) is not a problem.

I have read that levels of calcium in the blood (hypercalcemia) and/or calcium in the urine (hypercalciuria) and parathyroid hormone (PTH) are often elevated in patients with sarcoidosis. Have you had these tested? Do you have these results to share?

[LizardKing]

Isn't sarcoidosis an autoimmune disease that causes these sort of symptoms?
I'd think that unless you have MRIs that show MS type lesions there would be little reason to
worry about MS, you have a disease that cause autoimmune symptoms already, one that needs to
ruled OUT in order to give someone a proper MS diagnosis.

On top of all that, all the vitamin info people give here should be looked into and surely can't HURT in any way.
Lacking nutrients can and will cause a lot of problems AND many diseases also cause deficiencies.

[lyndacarol]

I have not heard of this finding of excess vitamin D in patients with sarcoidosis. Could you supply me with a link to sources (so that I can learn more about it)? By the way, you say that you have excess vitamin D… What is that level precisely?

The California-based GrassrootsHealth (http://www.GrassrootsHealth.net) focuses, of course, on the worldwide deficiency; according to them, "excess" (unless possibly more than 300 ng/mL) is not a problem.

I have read that levels of calcium in the blood (hypercalcemia) and/or calcium in the urine (hypercalciuria) and parathyroid hormone (PTH) are often elevated in patients with sarcoidosis.

I seem to have found a partial answer:

Randomized controlled trial: Vitamin D supplements carry only slight risk in sarcoidosis
http://www.vitamindcouncil.org/blog/ran ... rcoidosis/

Is sarcoidosis another vitamin D deficiency disease?
http://www.vitamindcouncil.org/newslett ... -interest/

…Each of us has genetic weaknesses, some of our organs are less resistant to disease than others and we tend to die from a disease in our genetically weakest organ. The genome project was supposed to let us all know which organ is our weakest one but such knowledge was never forthcoming and probably never will be. So far, the greatest discovery of the genome project is that epigenetics is important.

Sarcoidosis is a rare disease that has the external trappings of a vitamin D deficient disease: it is less common close to the equator; it is more frequently diagnosed in the winter; and it is more common in those with dark skin. In sarcoidosis, the body forms a granuloma, or protective shell, that protects the body from further disease, and allows the disease to protect itself from the body’s immune system. Now comes evidence that sarcoidosis is actually caused by a mycobacterium similar to TB.

[lyndacarol]

I will take the recommended blood tests you provided and show my docs to see what they think. I've had so many blood test in the last year that I think they may have covered most of them but I will double check.

Vitamin D, innate immunity, and sarcoidosis granulomatous inflammation: insights from mycobacterial research. (2010)
BW Richmond, WP Drake
http://www.ncbi.nlm.nih.gov/pubmed/20473167

Patients with sarcoidosis demonstrate antigen-specific immune responses against mycobacterial virulence factors systemically and at sites of active involvement. Recent studies have shown the vitamin D-regulated, antimicrobial peptide cathelicidin to be important to the immune response against pathogenic mycobacteria. Given mounting evidence that mycobacterial antigens are involved in sarcoidosis pathogenesis, cathelicidin could play a role in sarcoidosis pathogenesis.

If your doctors have not tested for mycobacterial antigens, it may be worthwhile to discuss this with them.

[lyndacarol]

Another good reason to test for celiac disease (as the University of Chicago suggested):

Sarcoidosis in Patients with Celiac Disease (2008)
Elizabeth Hwang, Russell McBride, Alfred Neugut, Peter HR Green
https://celiacdiseasecenter.columbia.ed ... isease.pdf