VENTING. Very long and detailed post.

[stevemills]

The neck is the cervical spine. Lhermitte's sign is caused ONLY by cervical spine lesions....in the case of Multiple Sclerosis.

Not true. See here: Lhermitte Sign as a Presenting Symptom of Thoracic Spinal Pathology

I believe you have a misunderstanding of MS.

MS affects the spinal cord and lesions due to MS are found on the spinal cord. This disease has nothing to do with herniated/bulging discs which is part of the vertebrae.

Not true. MS is a disease affecting the Central Nervous System; that includes the brain, brain stem, and spinal cord. Lesions can and often do occur above the cervical spinal cord. Dawson's fingers is a good example. You can have lesions scattered around the periventricular area or on the corpus callosum itself. You can have lesions on your optic nerves even. I think you are getting confused with my responses to your own suggestions. I apologize for the confusion.

[SNOOPY]

stevemills,

I have been diagnosed with MS for 33 years and symptoms of MS since childhood. MS affects my cervical spinal cord, and now the Thoracic, much more so than my brain. I am very aware that MS is a CNS disease. This is a MS forum so my responses are in regards to this disease. Lhermittes sign, in MS, is due to cervical spinal cord lesions. This is not me pulling this out of thin air but information from 2 different Neurologists. I have had Lhermitte's sign for 33 year.

As I have said before Lhermitte's sign is not exclusive to MS, many other conditions can cause it. I did read your link but it was about other conditions and not MS.

I wish you all the best in your search for answers to the symptoms you are experiencing.

[stevemills]

Snoopy thank you for the information, but I think I'm going to take the diplomatic approach here and discontinue conversations with you to avoid perpetuating further misunderstandings.

Anyway, moving on...

I saw my PCP today to lock down more blood tests and referrals to neurologists at the local teaching hospital. My PCP actually graduated from that hospital and is very intelligent in regards to the study of neurology, so we were able to have a very detailed hour-long conversation about my problems.

Earlier this week I found what looks to be abnormalities in my brain MRI that were never noted by the radiologists or prior neurologists. One of them I'm confident is a lesion, but does not appear to be an MS lesion. It is triangular in shape and in the occipital lobe.
Here are the abnormalities in question: My brain MRI

I reviewed these MRI findings with my PCP who felt they were indeed valid concerns and wants me to show them to the neurologist.

[Poppy7402]

Just to throw something else into the equation to consider - have you been tested for Coeliac disease? It is becoming more and more recognised that both Coeliac and Non Coeliac gluten sensitivity can cause some horrific neurological issues.

To illustrate - a friend was diagnosed with Coeliac when she was in her 30s. At that point she was in a wheelchair, had numbness, pins and needles and pain. Gluten free for 20 years, then accidentally had gluten. She then went on to develop stiff person syndrome and progressive myoclonic ataxia. Her Neurologist (a world renowned specialist) has absolutely confirmed that the incident of being glutened was responsible for these.

I have a head full of lesions but after going gluten free, lost many of the issues I had previously been dealing with. Although NCGS is not my whole problem, it is a significant part of it so may be something you want to investigate as it could be something that vastly improves your quality of life.

Good luck :-)

[Myoak]

"Earlier this week I found what looks to be abnormalities in my brain MRI that were never noted by the radiologists or prior neurologists. One of them I'm confident is a lesion, but does not appear to be an MS lesion."

White matter lesion differential offers you a good deal of study potential, obviously. I have no expertise to offer, however, in the interest of leaving no stone unturned you may want to take a look at Cadasil.

Quote "How can CADASIL be diagnosed?

Currently, the most reliable method of diagnosis is sequencing the Notch 3 gene. This method can diagnose >95% of cases of CADASIL with certainty. The method involves a blood test sent to a specialized laboratory. Availability of the test result makes diagnosis of other family members relatively easy.

Prior to availability of the gene tests, skin biopsy was used to diagnose CADASIL. A technique called electron microscopy was used to look for the characteristic accumulations of granular material (called granular osmiophilic material, or GOM) commonly seen in CADASIL. Presence of the material can positively diagnose CADASIL, though a negative result does not necessarily mean that the disease is not present.

Additionally, a skin biopsy tissue can be tested for the accumulation of Notch 3, using a molecule that specifically detects this protein. The accumulation occurs well before any symptoms and therefore it can be used to diagnose other family members. At this time, skin biopsy may be used to confirm doubtful cases.
Magnetic Resonance Imaging (MRI) may show characteristic alterations in the brain, but the alterations do not appear to be specific only to CADASIL. Therefore, brain MRI should not be considered as a single diagnostic tool." End Quote

Thank you for including us in your diagnostic journey. You are provoking us to learn more. There is an unchanging, universal truth... "seek and you shall find."

Best wishes as you keep looking for the answers you need. Please keep us informed during this unfortunate but fascinating process. Without a doubt others will be helped by reading and learning from your diagnostic quest. By posting, you may be breaking the ice for someone who couldn't break it for themselves, so thank you for making that effort.

[stevemills]

have you been tested for Coeliac disease

Good question, yes I have been tested for it and it came back normal. Despite the normal results, I did maintain a gluten free diet for an extended period of time to see if things would improve, but they did not.

Best wishes as you keep looking for the answers you need. Please keep us informed during this unfortunate but fascinating process. Without a doubt others will be helped by reading and learning from your diagnostic quest. By posting, you may be breaking the ice for someone who couldn't break it for themselves, so thank you for making that effort.

Thank you. There were two reasons for posting all this: 1) to vent and 2) to make my journey publicly available for others in the same predicament. Undoubtedly, many people who google these symptoms will end up on these forums just as I did. That's why I think this message board is the best place to document my journey even if it's not MS - in fact I think this info will be even more helpful if it turns out not to be MS.

[stevemills]

Ok potential Googlers, here's another update from me.

I had my PCP do more blood tests... one thing I hate is when you search for this stuff and the person vaguely mentions they've had "every blood test under the sun", so here's exactly what I had done:
- Vitamin B12 test. Came back slightly above normal at 998pg/ml. I take B12 supplements which is why it's slightly high, but note that excess b12 doesn't cause any adverse effects.

- Vitamin D. Mine was 39ng/ml which is considered normal (great even) by the lab and most doctors. The vitamin D council reports this as slightly deficient but notes that it's still better than 90% of people.

- ANA Elisa. Came back negative (normal). This tests for Sjogrens and other autoimmune or connective tissue disorders. Note that for sjogrens, only 40-70% people will show positive so it's not definitive but highly unlikely. Also note that this does NOT test many other autoimmune diseases like rheumatoid arthritis.

- RA Factor. It was less than 10, which is normal. RA Factor is to test for rheumatoid arthritis and will sometimes be abnormal when issues like Sjogrens exist.

The other connection I made is that most of my more debilitating symptoms like "feeling of being on a boat" or pulling sensation, tinnitus, oscillopsia, nystagmus, and loss of proprioception all are part of the vestibular nervous system.

Now I mentioned my psychologist doesn't think these issues are anxiety related, but I can't definitively rule that out either so I sought out to find a correlation between vestibular dysfunction and anxiety. It turns out there is a relationship, BUT based on the medical journals I've read, it's a downstream relationship. What that means is the vestibular dysfunction can cause anxiety due to its effects on the thalamus, but it doesn't necessarily work the other way (upstream) where anxiety causes vestibular dysfunction. Be careful here because a lot of the anxiety based websites will tell you anxiety can cause these symptoms, but I have yet to see a medical citation for these claims so beware. Search for scientifically proven connections in medical journals first before accepting any source of information that claims to be a medical resource.

The stress response in anxiety does however have one nasty side effect: increased immune response. Remember that MS is an autoimmune disease so an immune system on overdrive is not good for MS sufferers (or any autoimmune sufferer). I can't ignore this piece of data as being important in showing the relationship between anxiety and my symptoms. There is still a chance all this could be anxiety or the anxiety is exacerbating an existing autoimmune disease.

[stevemills]

Sorry for the multiple posts but I don't have the "Edit Post" feature available to me.

Folks, this is looking very likely to be a demyelinating disease like MS. In the last post I mentioned narrowing things down to the vestibular system and the previous posts before that I mentioned finding a lesion on my brain MRI on the brainstem...
Well I found another lesion on the brainstem and together they appear to be on an area called the Colliculus which is the "switchboard" of the audio-visual system (vestibular).

I most likely won't be able to see a neurologist in months to help confirm any of this. I was on the fence before with the demyelinating theory, but now I am convinced this is it

Here are the images showing the lesions: First lesion, second lesion

[Myoak]

"Vitamin D. Mine was 39ng/ml which is considered normal (great even) by the lab and most doctors. The vitamin D council reports this as slightly deficient but notes that it's still better than 90% of people."

Thank you for the update, Steve.
If I may comment first on Vit D and then MS as perhaps not starting out as an immune disease...

PwMS benefit from higher levels of Vit D, possibly due to genetic differences.

”Patients with a vitamin D level greater than 100.0 nmol/L had a 47% lower rate of new active lesions compared with patients who had serum levels of 50.0 to 74.9 nmol/L (RR, 0.53).”

Moderator Note - this URL only gave a login page

Possibly, the cause of MS (where it starts) is replication of HERV (human endogenous retroviruses) in the presence of various risk factors for MS. "HERVs are ancestral, retroviral DNA insertions in the human genome, thought to account for up to 8% of the total DNA."

A company treating MS patients with an anti-retroviral (GNbAC1) issued a press release today, March 26, 2018 which is partially quoted below:

https://servier.com/en/communique/ge...e-sclerosis-2/

“These results are a significant success for GeNeuro as they demonstrate the role played by pathogenic HERV-W protein in patients affected by MS. It supports the concept of altering the neurodegenerative course of MS by treating a causal factor of the disease, as suggested by preclinical research,” stated Jesús Martin-Garcia, CEO of GeNeuro. “These clinical results support GeNeuro’s efforts to develop this approach in other HERV-related diseases such as Type 1 Diabetes, CIDP[3] and Amyotrophic Lateral Sclerosis”.

"GNbAC1 is a monoclonal antibody designed to neutralize a pathogenic protein encoded by a member of the Human endogenous retroviruses (HERV-W) family... The pHERV-W protein is thought to be a causal factor in the development of multiple sclerosis, Type 1 diabetes and CIDP."

Rolly

[Myoak]

Sorry my link did not work...

”Patients with a vitamin D level greater than 100.0 nmol/L had a 47% lower rate of new active lesions compared with patients who had serum levels of 50.0 to 74.9 nmol/L (RR, 0.53).”

For reference please google, "High Vitamin D Levels Linked to Lower MS Disease Activity".

Steve, congratulations on the progress you are making toward diagnosis even though it is beyond disappointing to be in a situation which calls for one. Your assessment that something of a demyelinating nature is in play may be correct. But whatever the case, may peace settle in your heart. And, may the thoughts which likely are racing in your mind slow their pace to grant you rest as you search for the best way forward in your life.

For me, having studied MS for nearly 4 decades as a lay person on behalf of my wife, I have come to my own conclusions about doctors and medicines relative to MS... to say they both leave a lot to be desired is a gross understatment.

Personally, if I could tolerate taking Combivir (each tab contains 150mg of lamivudine and 300 mg of zidovudine) which can cause serious, life-threatening side effects, I would definitely consider taking it for MS. Why? Because if Combivir kills human endogenous retroviruses-W in blood cells and astrocytes and those retroviruses are driving disease activity in MS it would halt MS progression by treating the cause of MS... if indeed, the cause for MS is the replication of HERV and the disease process which ensues from the replication of those proteins (viruses are largely composed of strings of proteins).

I would have absolutely no qualms sourcing Combivir from India because I have sourced meds there for years without problem. In fact, I have more confidence in Indian meds because they never come loose in a bottle as most meds do in the US but rather individually sealed in dated strip foil. Generally, taking meds without proper supervision is unadvisable and largely illegal. Anyone self-medicating must be capable of self-monitoring. We all do that to some extent no matter what we take, however, some meds are require more monitoring than others, obviously.

Also, I would take LDN (as I have nightly for years). Why? Because 60% of PwMS taking it report feeling better and LDN is truly harmless having not a single serious adverse event reported. And, IMO, it has medical benefits that warrant people not having MS taking it.

Lastly, if going a more traditional route in treating MS, I would consider HSCT, Tysabri, or Ocrevus in that order and no other DMT. For me, the risk - reward is too far out of balance with other DMTs. JMHO.

Please understand this is just me talking! I am not recommending ANYONE do ANY of the things I mentioned! My goal in stating my preferences is merely to encourage personal investigation for those wanting to go beyond the 'fear of lawsuit' advice limiting most doctors' discussions with patients.

[mathgirl24]

I am in limbo as well and take LDN (low does naltrexone). I do believe it has helped me to feel better. It helps me sleep better which helps with energy. It has also helped control my appetite and so I eat better which also leads to feeling better. I'm not sure how to get it with out a prescription though. My refills run out and not sure what I'm going to do after that. Guess I'll see how I feel and if I start to feel worse I'll mention it to the doctor.

By the way I was taking it for reasons other than MS. The doctor I went to see specializes in alternative medicine and it was part of her protocol to help with possible other viruses/infections. (Long story!)

[mathgirl24]

I also have a question for you. As far as reading your own MRIs. I have tried to do this and was able to identify the same lesion as the report. But I also saw some other places that were questionable lesions that look similar to the ones you have pointed out. Have you been able to talk to a neuro and confirm that any of these are lesions in the past?

[stevemills]

Myoak thanks for the article. I've read about the link between Vitamin D and MS in the past and it certainly makes sense. I'm sorry you are in the unfortunate circumstance to be dealing with MS and I hope things improve for you.

Have you been able to talk to a neuro and confirm that any of these are lesions in the past?

Unfortunately no, I found these "lesions" recently and they could turn out to be bad research on my part so take it with a grain of salt. My primary care dr has seen the images and labeled them as "concerning", but will not say any more than that.
The two neuros I saw in the past wouldn't give me the time of day much less go over an MRI with me in the same room. Between my experience and my friends/relatives, many of these neurologists are just downright nasty and unapproachable.

I've been referred to an MS specialist at the local teaching hospital and a rheumatologist, so I'll make sure to show them as well. The appointments are months away, so no answers anytime soon

[Myoak]

"The doctor I went to see specializes in alternative medicine and it (LDN)was part of her protocol to help with possible other viruses/infections. (Long story!)

Hi mathgirl24,

Relative to infections you may be interested in the Wheldon Protocol. I personally know one person with MS who has followed this protocol the last two years with stunning success. Some people who mention the Wheldon Protocol get their faces ripped off by naysayers, so expect it. But I do know one woman who has followed Dr. Wheldon's protocol precisely and she has improved remarkably. She sources the antibiotics from India for a few hundred dollars per year. BTW, you can get naltrexone from India and easily make LDN with minimal effort. It costs pennies a day for my wife and I doing just that.

Concerning the Wheldon Protocol, I will quote what MacKintosh posted here at MS World on 9/17/2012...

Quote, "Wheldon Protocol Success Story"

"Hexed, I suggest you go to the cpn help site (if you search "chlamydia pneumoniae antibiotics" you will find it).
I'm a little gunshy about posting here, but here we go. A few years ago, I was roundly chastised for posting here about this recently identified bacteria (1990's) and its treatment protocol, which was developed by Vanderbilt University.
As we all know, studies and development of drugs and drug protocols take FOREVER and I didn't have forever, the way I was sliding downhill, so I just did the abx treatment, based on what seemed to be pretty simple science.

I am now fine. We don't have to call it cured, but I am fine. My short term memory is back, my ability to balance with my eyes closed is back, my recall of vocabulary is back, as is my ability to swallow, hold a glass in my left hand, and maintain a normal body temperature. My left foot drop is gone and I no longer trip over invisible specks of dust. I wear high heels and I drive a stick-shift car. I'm also very busy restoring a hundred year old house and supervising a crew of nine, rehabbing another home.

I was an investigator by profession, so I did a serious, comprehensive investigation on this treatment, its originators and a couple of its main proponents. And, in the end, they checked out. Since I didn't have a decade to wait for more studies, I started treatment based on the Vanderbilt study. I have never been sorry I did. (I have never done any of the CRABS or other scary chemicals.)
Vanderbilt has just hired an additional research doctor to continue (no, it did not fall by the wayside) their research into chlamydia pneumonia, and a few other institutions are also investigating it. Dozens of U.S. physicians, as well as many throughout the world, are prescribing it.
I don't want to get into another huge philosophical debate here again. The last one was emotionally draining and unproductive.
Let's just say I was very proactive in my search for an answer as to why my body would suddenly start chewing on its own myelin. A bacterial infection that hides inside the cells made more sense to me than my body flipping a switch and suddenly going belly up.

If you want to discuss it, please message me privately. And, if anyone wants to attack me personally, please hit the 'delete' button. We are all entitled to our own choices in treating this disease and I have made mine. It was cheap, it was simple, it didn't make money for anyone. And it worked." End Quote

I do not know MacKintosh, I only quoted her. The lady I do know had reoccurring infections and reoccurring MS flares. Treatment using Wheldon's protocol has greatly reduced MS activity and infections.

Possibly, different types of infections contribute to MS, or initiate a process leading to MS in different people. Perhaps, MS begins in more than one way. We just do not know, yet. Perhaps, treating MS successfully requires different therapies for different people.

Mathgirl24, if reoccurring infections have been problematic for you, you may want to investigate the Wheldon Protocol. Please be informed your neurologist will not have a clue of what the hell you are talking about with either Wheldon's protocol or LDN. Usually, both are outside their training, experience, and interest. Your mention would likely be met with is skepticism, smirks, and patronizing. You have to dig this knowledge out for yourself. Something like what Steve is doing to achieve his diagnosis. No doctor will ever be as interested in your health as you are. But you can learn a lot at sites like this one which may benefit your life greatly.

Best to you

Rolly

[mathgirl24]

stevemill:

My appointment with the MS specialist isn't until June and I made that appointment in February. So I totally understand that!

Myoak:

Chlamydia pneumoniae and EBV were the two that were identified that I had really high IgG antibodies for. I do not have acute infections of these but from what the alternative doctor explained to me is that these bacteria and viruses have remained in my system at the cellular level and are still there causing other problems. I go back to that doctor in a couple weeks. So we will see if there has been any progress. I had to stop taking some of the supplements they had me on because they were making my stomach sick.

I'll definitely look in to the Wheldon protocol and I might ask the alternative doctor about it.