Progressive M.E.

[Plum]

Paraneoplastic panel I think is what you are refering too.

I can't seem to find that name on her website. I don't know if she calls it something else?

 

[Justin30]

I can't seem to find that name on her website. I don't know if she calls it something else?

I dont think she will do a panel such as this. A Neurologist would.

 

[Justin30]

ble. I think I've come across someone sub categorizing ME in categories such as "neuro ME". That would fit me quite well.

This is what my symptom profile looks like.

 

[lansbergen]

@panckage Not sure how to deal with that if that would be the cause. Increase activity?

Increasing activity before improvement is the worse one can do.

 

[Justin30]

Increasing activity before improvement is the worse one can do.

I totally agree.

 

[moblet]

Alison Hunter, who died in the 1990's of what you would describe as "progressive ME", was I believe the first person to have ME recorded as the cause of death. On that site is a link to another case recorded in the UK in 2006.

 

[taniaaust1]

I googled and read a bit about it @Justin30 . Is your opinion that it can`t be M.E. since it`s progressive, or just check other things to be sure? Not sure if I did these tests during my diagnosis, or not. Are they blood tests?

thou i believe there may be progressive ME in some cases, in most cases it shifts and changes a lot so if it doesnt do this which is almost characteristic of this illness which helps to separate it from other ones... I'd think it would be more likely to turn out to be something else compared to someone who has the more common shifting and changing, up and down kind of ME.

sorry to hear that you do have a progressive case of something be it ME or something else. I thought at one point that mine was progressive and due to the severity of things at times believed I could never recover, i was one of the worst cases we hear about but I did end up having a remission after that (thou i have it back now). ME is truely an illness where we cant predict what is going to occur for us in the future.

From my progression I know just how far we can come back from (I was near fully bedbound for 9mths where I couldnt even sit or even hold my head up a lot of time and couldnt eat with a fork and often couldnt speak .. was back to talking like a 2year old with single words or using like baby sign language. I couldnt walk to a toilet. I had trouble staying awake for more then 30mins in 24hr periods and sometimes was comatose for several days at a time without waking at all.

I've had over 90 different symptoms with this illness including what many would call the neuro subgroup of ME with myoclonus, seizures, going unconscious and MS like symptoms eg leg drag, loss of ability to feel hot water on skin etc etc

I think of ME along the lines of MS as they get relapsing and remitting and progressive too.

I must of tried over 30 different things till I found the very first thing which helped me a bit, the only things which have ever helped me with this (other then being careful not to overdo) is things which have been indicated for me to try through abnormal test results pointing me in those directions. Randomly trialing things has never worked in my case.

It is a needle in a haystack dealing with this illness but dont give up, there is something out there which could help you and when it does, quite possibly it may not be progressive any more.

 

[taniaaust1]

The weird thing is, most of the people I discuss and share my experiences with that are on the same treatment (around 20) also are not responding. About 4 has responded so far, and most are beyond the 6 month mark..

sighs..that doesnt sound good.

 

[taniaaust1]

Alison Hunter, who died in the 1990's of what you would describe as "progressive ME", was I believe the first person to have ME recorded as the cause of death. On that site is a link to another case recorded in the UK in 2006.

Unfortunately with alison she had doctors not believe she was sick so she was seen as s psych patient and hospitalised which would of worsened her whole condition. Sadly this same thing goes on today in UK.

 

[Izola]

Would like to hear someone more knowledgeable`s thoughts on this:

* * *I am still progressing 8 years later. Often, when I get a new or progressed symptom, it stays forever. It may vary in intensity, but often it also stays in the intensity it came. I don`t relate when people say "oh, I had that symptom for about a year, and it went away". It never goes away for me, i.e. loss of skin sensation, loss of smell, muscle weakness, nautical vertigo, visual snow. Have had every test known to man many times, so I know that it`s nothing else.The last year, it has progressed in an alarming rate, getting worse by the weeks. I am severely depressed and scared at the moment, feeling really hopeless
about my situation. I am scared that this form of ME is untreatable in every way, that I will get worse till I am extremely severly ill, and also I find myself questioning if it`s really M.E. I have, since "all" I hear about are relapses and remissions while I almost only progess.

Are there any type of knowledge, written or otherwise, about the progressive form? Are there such a thing as progressive M.E.?

Mariah: I am so sorry this is happening. There are progressive cases. Mine, too, is progressing, but not at the high speed yours is. Also, my progression probably has more to do with not limiting myself in the beginning because I had family to take care of so I was always crashing.

I am not a doctor nor any other kind of medical professional but personally, I would think a continued search for diagnostic reasons might be helpful. Your symptoms and progression have elements I have not heard about before.

My speech and writing is limited by the severity of my ME, but I have read volumes of the history of ME and many medical practitioners' text related to ME as well as other knowledgeable writers. I believe I can safely say I could separate the reliable from the specious, e.g. the quackery from the well based writings.

I am so sorry this is happening to you.

You might want to take a look at Dr. Byron Hyde's website and the Humming Bird foundation site. hfme.org This site will track you to Dr. Hyde's site which is: http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf .

In about 1991, Dr. Hyde put together a volume with all the current research collected as of the mid '80's when an ME epidemic broke out in Incline village, and thereafter across the U.S. and the globe.

The CDC, hoping to hide the outbreak, changed the name to CFS and gave it such a loose definition, all kinds of symptoms and illnesses were swept under the CFS umbrella. You probably know all this, but it doesn't hurt to go back to an early diagnostician and the basics and that is Dr Hyde and www.hfme.org

The Humming Bird foundation site gives a long list of symptoms and leads you through the quagmire that "ME/cfs" has become. I hope some of the suggestions on this forum help. Take care. iz

 

[taniaaust1]

@Izola

A good symptom list is also here based on studies http://wwcoco.com/cfids/bernesx.html and it has issues with smell on that. "

• Other symptoms reported: decreased libido; hallucinations; alteration of taste, smell, hearing; tinnitus"

There is so many different symptoms which can come in with severe ME that often we dont hear about some of these esp ones which are only causing a person more minor issues like smell.

and "

• Disequilibrium, spatial disorientation, dizziness, vertigo: 60-90% "

• 
  
• I had a shocking case of vertigo with my ME one time when I got up to see to the door after I'd over done things and ended up on floor due to the severe vertigo, couldnt even sit due to it

for severe ME, I dont think the symptoms themselves are unusual.

 

[kangaSue]

I'm curious to know what this test would be called via Dr. Myhill. I know her tests quite well and can't think of 1 quite like this. Anyone have any ideas?

Most of these are standard tests done by hospitals or major Pathology labs looking for known antibodies that occur in a wide range of conditions, Mayo just lumps them all in to one panel when the condition raises the suspicion of a hidden cancer.

The ganglionic AChR antibody test is one exception that you can only get done through Oxford University or Mayo and a couple of research mobs in the U.S. This antibody is one that can cause widespread autonomic dysfunction as found in the likes of Autoimmune Autonomic Ganglionopathy. N-type or P/Q-type Voltage-gated calcium channel antibodies crop up in a lot in autoimmune conditions too and can cause muscle weakness.

 

[Mariah]

@lansbergen I agree, just wanted to know what the person who said deconditioning could be the cause would have me do. Wouldn`t be able to increase activity much at this point anyway,

@taniaaust1 Just don`t know which other illness it could be. I`ve been through every test known to man (I feel like) at least 2-3 times. Every doctor agrees I have M.E. My decline could have something to do with always crashing because I often refuse to live more as a sick person. I guess the illness itself will force me in the end. But I feel like the worsenings are brought on from really, really small stuff. I`ve actually encountered many with M.E. who say they have gotten worse over the years. I also like to compare it with MS, and as you say there are relapse-remitting and progressive sub groups here. I just don`t want to belong to the progressive group for which nothing works, and I am doomed to end up extremely severely ill *sigh*. Thank you for your words of encouragement!

@Izola Would you care to elaborate on exactly which elements you have not heard of before? As I have said, I think I have been tested for everything under the sun, but if I am going to try one more time and go through more diagnostic tests, it would be helpful to know exactly what to highlight as unusual in my history and pattern of symptoms to the doctors. Thank you for your kind words! I can`t read much because of the nautical vertigo/dizziness, but I will read the "Testing for ME"-part on the links that you gave me, little by little.

 

[Mariah]

Also just wanted to add that my illness do vary *some*. I.e. my pain level varies all the time, my sensitivity to light and sounds, myoclonics and so do a whole bunch of other symptoms. It`s not like it does not vary at all. But it seems to be like if I have hit a new "low" it will stay there, like with my muscle weakness and my vertigo/dizziness, and that the progression just won`t stabilize but just progress further. And I know it could be at least partly from constantly crashing and living way too much as a healthy person. But I just don`t think that is the whole reason, it doesn`t feel like it. Even people with ME who often push themselves have relapses and remissions, while I only "relapse" into oblivion.

 

[panckage]

@panckage Not sure how to deal with that if that would be the cause. Increase activity?

Well it's a bit of a catch 22 unfortunately. Are you able to do any exercise at all? I'm mild so the exercise I used to recover from the deconditioning would probably not be appropriate for you.

You would want to do the lightest strength training possible. So things like yoga positions would be good. Also any strength training you can do lying down would be good too. Do body weight stuff. I wouldn't worry about weights Focusing on the lower back and spine is good. Unfortunately I don't know the proper terminology for these things but a physiotherapist would know what to do its pretty basic stuff

 

[caledonia]

@taniaaust1 My decline could have something to do with always crashing because I often refuse to live more as a sick person. I guess the illness itself will force me in the end. But I feel like the worsenings are brought on from really, really small stuff. [/QUOTE]

My doctor told me to reduce activity to the level where you're not crashing. That way you will feel consistently better.

Of course, it's impossible to avoid all crashes and sometimes for your sanity, you need to plan on doing a social activity with family, for example, which you know will cause a crash. But in general, it's best not to do the push-crash thing because you want to act normal. This is a good way to make yourself worse.

So my first suggestion would be to do a trial of keeping within your energy envelope as consistently as you can and see if that helps. Some people use heart monitors to help them gauge this.

http://livewithcfs.blogspot.com/2015/01/new-heart-rate-monitor.html

https://www.facebook.com/groups/ME.CFS.HRM/

As others have said, it's common to feel worse while on Rituximab before you get better. Or, I suppose, worse if it's not going to work for you. I would hope that you would be able to return to baseline after you're done trying Rituximab. If you're six months into the trial, hopefully that is soon.

So my second suggestion would be to keep hope that there is an end to the Rituximab crash and whenever that trial is over, you will start to feel better.

 

[Mariah]

@panckage I guess I could do some. The question is, should I push myself to do these exercises? I don`t have the answer. I would think that if I use up energy on that, I would have to stop doing other things.

@caledonia I do know that I shouldn`t. It`s in practice that it gets hard . I don`t think my situation now has that much to do with the Rituximab actually. It has been a steady decline all the 8 years of my sickness. Unfortunately it doesn`t seem that the drug will help me. Thanks for all the tips and the reading material! Appreciate it very much.

 

[Justin30]

If you have POTS as well and do not monitor your HR you could be constantly over shooting your anaerobic threahold which will cause crashes.

 

[Mariah]

I am not diagnosed with POTS, but I am fairly convinced I have it. I take beta blockers at night to calm my heart rate down. I actually have a heart rate monitoring watch on my wish list for my birthday. Haven`t been able to afford one myself yet.

 

[justy]

I found I have been steadily worsening. I have now been found to have Lyme and co infections, Mast cell activation (stabilising that a bit has helped quite a lot of neuro symptoms), and leaky gut issues, including bacterial translocation. Taking immunoglobulin's by injection stops the decline.

I am amazed at how many of my symptoms are actually MCAS - im not better with treatment - but its helping in so many ways, I hadn't realised how many body systems it can affect and how severely - thing I thought were severe neuro ME have totally gone away unless I am reacting such as the severe myoclonic jerks that I was having many times a day.

I think its important to find the underlying issues and try and treat them - shame you didn't get help with KDM, he is my Dr and I exp[ect to spend a few years treating before feeling much better. But progression seems slightly slowed a times for me now.