Tests for muscle stiffness?, nuero vs vascular (circulation)- need help brain storming

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astroman
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Date Joined Mar 2014
Total Posts : 3854
   Posted 9/12/2017 9:56 AM (GMT -7)   
Hello, I'm here from the lyme forum....ran out of ideas. Both lyme and MS diagnosis / treatment seem to have their non-concrete variations. This drives me crazy LOL.There seems to be some technically sound advice here along with open minds. Very much like the lyme forum (good) and certainly not like some of the other forums - why I posted the below questions:.

1)******What are the best methods to figure out if muscle stiffness is from nuero issues (wrong signals) or poor circulation?******

I had tremendous whole body stiffness and tremors when I moved for years. It was really bad in the AM, got better late in the day. Most "lyme peoples" technicality ends by saying treat the infection and you will be fine. However there is the underlying, somewhat unsupported idea that lyme causes some permanent damage, as some never get 100% better even after long term antibiotic use.

So lyme Drs have no answered to this. Conventional Drs I met dont put in much effort, some are pathetic in their lack of detective abilities.

Anyway, if you tell your "average" Nuero that you have or had lyme, chances are they will laugh you out of the clinic. Its pretty sad, and best not to mention it. So far they just looked at physical reflexes and feeling on the bottoms of my feet - then say , you dont have MS, and thats the end. One said I have "stiff person syndrome", like that helped.

I had a brain MRI run through the NueroQuant software from a Functional MD. This is primarily a mold detector (it can get in your brain), but looks for other abnormalities too- I had none, all was well. But that would be their "opinion" from their software.

2)***I'm assuming Nueros who are MS specialists might know other nuero issues that cause stiff muscles?***

I have to do extremely deep and high pressure massage to get my muscles to soften- that is "pressured", UN-natural circulation. I do this repeatedly. After years some areas are better.

The above is where I'm thinking this could be a circulation issue too, - I might go to a different forum for that question...........

Was athletic in my past, still am but not as much (after I losen up my muscles), - I understand fitness very well. Have gone to MANY PT's and athletic mined chiros with no permanent solutions other that repeated deep pressure for what seems to eterity. It helps a lot, I'm now stronger, but not completely. I've thoughly studdied and practiced healthy clean eating too- and understand it well. I get stiff from keyboarding, standing ect and need to sit and just relax to losen up thoughout the day - this effects employment options.

Note: I had many lyme symptoms, problem is they overlap with so many other causes that are also tough to prove. My killer "T" cells remain low which can be a sign of infection. T cells are not understood much. Lyme kills them, HIV'er have less, I was tested and neg on HIV just to be sure. There are no awesome lyme tests. I had the bullseye 25 years ago, with lots of tick history as an outdoors man.

Please excuse the lengthy post, I figured some history will make it clearer. I function, not enough for many jobs though. Doctors dont take you seriously if your able to function (from "outside" visual observations). I have been asked about this by employers who noticed and fired/layed off in the past to- from my uncontrollable symptoms. I barely functioned for a year and my thoughts are with those who are here and face this daily.

I did go to a Dr who knows "born with" muscular diseases (it was a children's clinic), I was gene tested thoroughly for many muscle diseases (the dystrophies and mito diseases)- so those are ruled out (there are many).

thanks for any testing ideas or advise - I'm just reaching out using all resources, life is short, you fully realize this in your 50's LOL.

Post Edited (astroman) : 9/12/2017 11:25:57 AM (GMT-6)


straydog
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Date Joined Feb 2003
Total Posts : 15181
   Posted 9/12/2017 12:47 PM (GMT -7)   
Astroman, I happened to see your post & wanted to make a comment or two. If you have read much here in the MS forum, look for posts made by Gretchen & Snoopy. Both have MS & can tell you how difficult it can be getting a dx for it. There is no one test to diagnose MS. Its a process of elimination of various other conditions, some testing & certain symptoms. It can be a very long haul to ever get the dx.

Personally, if this were me, I would look for the nearest teaching hospital & contact them to see what it would take to be seen by their drs. Many people do this when their main stream drs tell them I can't find nothing wrong with you. An example is the neurologist that you saw, he rolled his eyes & kept going. The teaching hospitals take an entirely different approach with patients. At least going this route everything gets checked at once & you are not fobbed off to this dr & that drs for month & months.

Several years ago my brother was in a one car accident. He required a level 3 trauma hospital because of a brain injury. He had the best care at a teaching hospital, it was the closest one available that could handle that trauma level.

I have circulation issues in my lower extremities, my legs & feet swell & I have a lot of discoloration in the lower legs. Kind of hard to miss, lol. I have doppler studies done ever so often to keep this in check.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3854
   Posted 9/12/2017 2:10 PM (GMT -7)   
Hmm. Like a university hospital (?). I will look into that.

Some Drs are like car mechanics- dont put effort to diagnose what they cant see. The best ones put some effort into their job.

Even if it truly is "lyme damage" (progression did seem to stop after ABX use), I need to first identify what it did to me, what it affected in order to try fixing the damage left behind.

Lyme literate Drs (LLMD's) dont even attemt to repair, and just admit that some long term damage can occure - thats why I'm lookig beyond lyme Drs.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15181
   Posted 9/12/2017 5:21 PM (GMT -7)   
Yes a university hospital. A quick example, I know a lady that was having some very real bad problems, terrible weakness, could hardly get out of bed & a lot of other things. Ended up in ER several times. Her drs could not give an answer. Her husband got disgusted & got her in to a teaching hospital. They checked her from head to toe. Come to find out it, it was a statin she had been put on. She had been on it a couple of months. They took her off of it & in about a month she was back to her old self. They truly work to get to the bottom of a problem.

If you go this route I hope you can some answers. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Gretchen1
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Date Joined Jan 2007
Total Posts : 3547
   Posted 9/12/2017 7:16 PM (GMT -7)   
Hi Astroman. Sorry I'm so late to this. I'm a school teacher and school just started up again and I'm slammed!

Straydog has given you some solid advice. You can also contact the MS Society. Find the local chapter. They typically maintain a list of local doctors who specialize in MS.

A neurologist will begin with a full exam of your neurological reflexes and responses. If those indicate abnormal neurological functioning, then an MRI will be ordered. Blood work is also fairly typical. Other tests may include evoked potentials (vision, hearing and extremities), and a lumbar puncture.

If you so have MS, there will be no repair. It is progressive and incurable at the point. You may be put on disease modifying therapy. The goal being to slow down the damage done by MS. Hopefully you have good insurance. MS is extremely expensive to treat.

Keep me posted. Ask lots of questions.
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

I have no lesions on my soul and so I live with no limits.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3854
   Posted 9/15/2017 9:15 PM (GMT -7)   
Thanks- I'll try these ideas on how to find advanced nuero testing. The traditional route got me no wear, maybe the MS route will lead me to some Drs who will put in some real effort. Lyme can also infect and damage the nervous system. Unfortunately, It will be a few more years out before this is taken seriously in conventional medicine. When you mention lyme to an average "nuero" Dr, they run from you- afraid of what they dont yet know.

Just a note to anyone reading this: When conventional medicine says something is incurable, I would to some extent, take that with a grain of salt. What that means is the "big money" has not figured it out yet. I have fixed several health items after years of research with natural methods vs using Rx meds that failed me - and conventional medicine said it was impossible. Dont get me wrong, Rx has a purpose, but it also steers one away from finding root cause of said disease.

Never give up researching, conventional Drs for the most part only know what they are thought in school - they are good at keeping us alive, but not at curing chronic illness. It is very unfortunate that big pharma plays a role in this and has no interest in "curing" people. One more cured person is one less customer. Many "cures" are found by the little guys in private labs, sometimes even home basement labs - never an Rx company.

Post Edited (astroman) : 9/15/2017 10:18:51 PM (GMT-6)


Gretchen1
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Date Joined Jan 2007
Total Posts : 3547
   Posted 9/16/2017 8:20 AM (GMT -7)   
Good luck to you. I'm sorry you feel there is some sort of conspiracy out there. I've been very lucky and have had great success with my doctors. My rx has kept my disease from progressing significantly. I still work full time and enjoy a life full of blessings. The medication I take has given me no significant side effects.

My doctor has encouraged me to include lifestyle changes and to take stress reduction very seriously. I have researched nutrition and have made that a part of my treatment as well. Doctors certainly don't know everything, but I give them a lot of credit for what they do know. They went to medical school, and I didn't.
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

I have no lesions on my soul and so I live with no limits.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3854
   Posted 9/16/2017 1:54 PM (GMT -7)   
I understand your viewpoint. However, conspiracy is not the same as finding a root cause - big difference. The fact that big pharma is about profits is a fact, not a conspiracy.

People here have symptoms. Some Rx's do make life better from putting a chemical band aid over the cause, thats great when someone finds an RX that helps symptoms. But If we can find the cause- no argument there, its just a better ending. Until then, people have Rx's, yes they obviously have a purpose.

I kept on getting flat tires driving though a new construction area. Got two tire plugs/patches in two weeks (band aid solution for the tire holes). Solution- use a different road with no nails scattered on it.......no more flat tires.

Drs are human, meaning some are better at what they do than others. They are also to some extent limited to what they can practice due to law. As people, they not above the rest of us though. Any problem solver who can memorize text can be a Dr. - if they find the $ for med school.

Post Edited (astroman) : 9/16/2017 4:24:17 PM (GMT-6)

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