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Posted By : tiredredhead - 7/19/2017 5:38 PM
Hello everyone! I finally had the nerve rebuilding treatment and it was no big deal. Divided pan of water, electrodes dropped one in each side, attached to same type little machine as a small tens unit. Supposedly this forces the nerves to speed up while it's going on and the hope is they regain some speed after repetitive uses. I am pretty skeptical about this. But its 3 more 15 minute treatments. I can give 45 minutes of my life on the off chance.

As far as my MRI results go.... still don't know a darn thing other than it's not MS and I am not likely to lose a limb tommorrow. I know I have two cervical discs abutting the cervical cord. Yet neuro says that's not responsible for hand numbness/weakness or spasticity in muscles. He's "not concerned". I already knew the mess in my lower spine. Nothing new there.

The issue is the findings in my brain. Which again he is "not concerned".
Subcortal frontal white matter bilaterally most consistent with atherosclerotic small vessel white matter disease reported in migraine syndrome. I don't HAVE migraines. I rarely have headaches. Sooooo... what the diggity doggies is wrong with me.

His plan is to treat me symptomatically without knowing exactly what is causing it. Including the memory/ cognitive loss.

I do have a sleep study scheduled for Aug 1st. Maybe there will be something there.

This is all just frustrating as monkey poo at this point.

Sarah

Posted By : straydog - 7/20/2017 4:56 PM
Sarah, now that I read about the nerve regenerating I am kind of like you, hey its worth trying. The best I can figure out they are saying this is seen with migraines, not exactly saying you have migraines.

Was it the neurologist making the comments about your neck? If so, my personal opinion, when it comes to the spine they really are not the dr I would go with for taking their comments as being the gospel. I would take my films & be seen by a neurosurgeon. Spine issues is their specialty & they can give you an accurate account of the MRI. Not totally buying into his theory about the hand numbness/weakness either. Even with a normal EMG study, that is not a highly reliable test for the neck. Not sure how he intends on treating something that he doesn't know what is causing what.

Just my thoughts.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 7/20/2017 6:09 PM
Sarah:
The presenting variable of spasticity in your arms/hands points to a differential diagnosis that would encompass a central nervous system effect or disorder. Not a peripheral nerve disorder or cervical disc disorder.

Therein, the MRI finding of frontal lobe subcortical white matter findings and small vessel athlerscleosis takes on more significance. I disagree with your MDs comment that these findings are "not concerning."

Diffuse small vessel arthlerslerosis lends to inadequate vascular perfusion of those areas of the brain so affected. Lack of blood flow
and/or inadequate oxygenation would be one basis for central nervous system deficits such as You are reporting. Think of it as small, mini-strokes. Your symptom presentation (spasticity, headaches, weakness/paresis, and altered sensation) certainly could be eminating
due to small areas of white matter vascular insufficiency.

Adding this neurologist's Ho-hum MRI reaponse to his proactive use of a "nerve rebuilding" treatment that has questionable clinical
Validity or efficacy, and I would be seeking a new neurologist ASAP.
I feel as though this physician has identified your vulnerabilities (fear; earnest hopefulness to find a treatment where treatment options have been few and sparse) and is leveraging your situation to his betterment (financial gains and fees for services).

If your spasticity and weakness is central nervous system in origin, this purported "nerve rebuilding" therapy will be of low to no value. Beware of treatment modalities that have the outer casings of a fancy box or blinking lights or volume knobs or intensity gauges. Such modalities can be little more than snake-oil. If this nerve regeneration therapy is authentic, it will have been awarded FDA clearance and be the topic of published professional journals.

This neurologist and your narrative with him does not pass my "sniff test." Make sure that you have your eyes wide open and that you have done a full due diligence.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : tiredredhead - 7/20/2017 6:39 PM
Unfortunately I must agree with you. After sleeping on it, I think something smells a little off here. He literally said not to be concerned about the white matter disease since we all get a little as we age. Uh huh. My caseworker for depression came over today and read my MRI reports and flipped out. Mood changes, loss of memory, difficulty learning new information, slow "processor" and a finding of white matter disease and he's NOT CONCERNED?!?! She couldn't believe the words not concerned came out of his mouth at all.

I decided to do the sleep study and go back for the results. Sweet talk the receptionist into copies of the report and then have my PCP refer me out for a second opinion in the bigger town next door.

I think I am also going to see a rheumatologist and let them look at my muscles. My caseworker thinks I have trigger points where I have these odd pains. Don't guess it hurts to cover all the bases.

Sarah

Posted By : straydog - 7/21/2017 6:47 AM
Sarah, glad to read that after sleeping on this you have decided for another opinion. I have huge issues with a dr treating something out of his realm when he has no idea what he is treating. When I suggested seeing a neurosurgeon please do not worry thinking oh great he will say surgery because that is what they do. A good neurosurgeon will give options. Since you have multiple issues take it a step at a time.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Alcie - 7/23/2017 4:50 PM
Do see a neurosurgeon about the cervical discs, although not necessarily for a surgical cure because there may not be one. I have numbness, spasticity and weakness in my hands from injury to spinal cord at C-3 and lesser damage at C-5. I have these problems in my feet and legs also, but often the hands go first. Your neurosurgeon can also give you a better idea about the white matter too. They do things other than just surgery!

You have a right to all reports and studies, so get them and take them with you to all your other doctors. You may not get the actual films, but you should have MRI images on a CD and the reports there too. You can copy these CDs on your home computer to take along to several doctors and keep in your own files.

I would see a rheumatologist about the trigger points. They may have nothing to do with your other symptoms. I've had fibromyalgia for over 30 years, starting probably when I was in a wreck. It has nothing to do with my big cervical spine injury just a few years ago. Nothing seems to help with it.

If you suddenly get cured with this nerve rebuilding machine please let us know so we can invest in it.

Posted By : tiredredhead - 7/24/2017 8:35 PM
Thanks for the advice everyone! I made an appt with my PCP for this week. Going for that rheumatologist referral and dropping my MRI reports on him to see what he thinks.

I didn't realize how much I am constantly moving until today. I was helping out at a kids consignment sale and a lady working with me asked if I had Parkinsons. She mistook my constant stretching for twitches. I am always having to move my hands, elbows, wrists, ankles, and knees or they "shorten up" and I'm more miserable.

I really do not understand my muscles. I have a stretching routine I do every day. Straps and bands, etc. I stay pretty active. Push myself to walk a lot. Use the elliptical machine at the gym (for 10 whole minutes) haha. Swim in the therapy pool. Up and down as mich as I can with my 7 year old and two grandbabies. So whyyyyyy can I never get relief? All this cumulative symptoms and test results are my me crazy!!!

Sarah

Posted By : straydog - 7/25/2017 5:48 AM
Sarah, I do urge you to push for a consult with a neurosurgeon to get your neck & MRI's reviewed by a dr that specializes in the neck. Many of of your symptoms with hands & arms can be coming from your neck.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 7/25/2017 5:00 PM
Sarah:
Your symptom profile does appear to be more of a central nervous system problem than a peripheral nerve problem.

Your muscles are constantly "tight" due to some area of irritation or injury to the brain's motor cortex - causing muscle hyperactivity or spasticity. Muscle hyperactivity exists along a continuum - mild to moderate to severe. The normal balance of muscular activity to rest is disrupted.

My sense is that the answer will be found in your brain MRI and diffuse white matter findings. You are needing to find a neurologist or neurosurgeon willing to spend the time to listen attentively to your narrative and symptom profile and compare that to your MRI and white matter findings.

Another area of injuiry would be evaluation of the neurotransmitters. It may be hard you are lacking one or more of the basic neurotransmitters. Parkinson's' and myasthenia gravis are both disorders of neurotransmitters.

Dyskinesia is yet another line of inquiry. Tardy dyskinesia and athetoid disorders are another class of neurological movement disorders that have origin in deep brain nuclei.

You really need a competent neurologist to look at your case with a fresh set of eyes. Someone that will listen attentively to your narrative and symptom evolution in conjunction with imaging studies and neuromuscular assessment.

It took close to 7 years for me to finally be accurately diagnosed with Addison's disease. 7 years of going from one physician to another. 7 years of incorrect diagnoses, a long laundry list of incorrect assumptions. All to say . . . Physicians know what they know but there is a lot that physicians do not know. Keep sourcing a credible physician and keep turning over every stone until the correct diagnosis is identified.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : tiredredhead - 7/26/2017 6:01 AM
Karen, thank you for the reply. The support I have found here is invaluable to me while going through this.

I totally agree with everyone about a different neurologist. I'm going to try to go see one at Vanderbilt in Nashville TN. I also want my brain MRI reread. The findings were foci of increased signal intensity in the frontal cortex. The interpretation was suggested of artherosclerotic white matter disease. Most everywhere I researched stated that is a finding in elderly aged 60 and older. I'm 43. Sooooo.....

I can tell over the past year that things are progressing in whatever this is. I never had a problem texting or typing on my phone until the last few weeks. Now I am consistently hitting the wrong letters. Like my hands and brain are not talking correctly. I find myself getting a little confused when heading into the bigger city next door. Routes I have taken for years. I'm like wait, did I take the right exit? That scares the snot out of me.

Thank you for all the help!
Sarah

Posted By : (Seashell) - 7/26/2017 7:53 AM
Sarah:
It was 7 years of futile physician appointments and inappropriate testing and a laundry list of mis-diagnoses before I was correctly diagnosed with Addison's disease. 7 years. This despite living on the west coast in a large metropolitan city with excellent medical centers and quality medical insurance.

In hindsight, all the symptoms of Addison's disease had been present all along. The problem was one of "group think." Once I had a diagnostic label (albeit incorrect), subsequent physicians latched onto prior diagnoses - which perpetuated the incorrect diagnostic line of inquiry.

The nervous system has two sub-types of neurons: Upper motor neurons that compose the central nervous system (brain and spinal cord); Lower motor neurons that compose the peripheral
nervous system (nerve fibers outside of the brain and spinal
Cord).

Your symptomatology is highly suggestive of upper motor neuron irritation or injury. Upper motor neuron irritation or injury = motor neuron spasticity.

White matter disease is not limited to older people. Obviously, white matter disease is more common in older individuals simply due to the effects of aging.

My sense is that there is more information to be gleaned from a repeat MRI of your brain interpreted by a competed neurological-radiologist or neurologist. The fact that your symptoms are progressive is worrisome. Do not delay in souring a new neurologist. Make sure that you do your due diligence in sourcing a competent physician.

Irritation and damage to the central nervous system and upper motor neurons is not always amenable to repair and/or recovery.

It is imperative that you get an accurate differential diagnosis so to minimize any further advancement and symptom progression.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : tiredredhead - 7/27/2017 10:50 AM
Alrighty. Had my PCP appt. it went well. Other than him turning purple and sputtering when he read my MRI results. He has gotten nothing sent to him from my neuro. He said do the sleep study and get the results and then you're done with him. He's taking over my gababentin script so I have no need to see this guy again. He also increased it to 600 mg. He's sending me to a bigger city to a different neurologist.

He's also sending me to a neurosurgeon. His words were "it's wonderful that these discs aren't damaging your spinal cord while lying flat and still in an MRI. What are they doing when you stand up and bend your neck????" He thinks I have 2 separate issues. A CNS issue AND a periphery nerve issue.

Also going to a rheumatologist to do a muscle check. Just to rule out any possible third issue.

He was going through stuff on his computer and asking me questions and checking my grip strength and such. He said you aren't leaking urine right? I was like well yes. He gave me the death stare. I told him I had 5 kids. No c sections. Figured it was pretty normal adding that to my muscle issues. He sighed and said lemme guess you are having some blurry vision episodes. Yep. Death stare again.

He feels those symptoms seriously up the level of how fast a diagnosis needs to be made.

How do you distinguish normal aging and pre existing condition stuff from what is important to this diagnosis?

Also, he said that white matter disease reallllly concerns him. He said i hit none of the points for it to be enough to be seen at my age. I am not overweight, great cholesterol numbers, no diabetes, and always had perfect blood pressure.

He feels it serious enough that if i have an episode of blurry vision lasting longer than 30 minutes, ANY increase in urine leakage, or any periods of total confusion to be taken to ER and them to call him. THAT scares the heck out of me.

Sorry this got so long, wanted to make sure I included everything.

Sarah

Posted By : straydog - 7/27/2017 12:44 PM
Well Sarah, all I can say is try not to panic until you have a reason to panic. Finally, a dr that actually took the time to read through your chart & ask you questions. Sounds to me like he is also interested in finding out exactly what is going on & see what it will take to remedy things. So again, try not to panic over this.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Alcie - 7/27/2017 4:49 PM
Since your doc is so concerned, are you wearing a medic alert bracelet?

Also, print out a card on bright yellow to carry in your wallet in a prominent place in case you can't respond or remember what to say in an emergency. You can easily print front and back with just Word. Include meds, allergies, surgeries or conditions.

I also have a tiny flash drive in my wallet, but nobody will look at that, so I have a single sheet of paper folded in my purse that has more than I could put on a card.

So glad you are getting attention, but so sorry you are having it so tough.

Posted By : tiredredhead - 7/27/2017 7:53 PM
Alcie, that's a good idea! I would have never thought of that. Getting into a fender bender, or getting rammed by a cart in the store, I giess would be come more serious when something is touching my spinal cord. No one would ever think of that if I was alone. Will have to look into that.

I also found something new out tonight from an aunt I don't get the chance to chat with much. In 2014 she had a brain MRI that showed white matter issues they said was stroke or migraine neither of which there is any evidence of elsewhere. They also found demyelination. Her symptoms are eerily similiar to mine. She's having another MRI soon, so should have more info. That's just weird to me.

Sarah

Posted By : (Seashell) - 7/27/2017 11:37 PM
Sarah:'
That you have a direct relative with similar imaging findings and symptomatilogy will likely be a helpful piece of the puzzle to share with your new neurologist or neurosurgeon.

There are any number of aspects of our health, or lack of, that have a common thread and familial predisposition.

There is more and more emphasis on generic testing of cancerous tumors, for example, in crafting chemotherapy that is more individualized. My father had a pituitary adenoma and acromegaly. There is research that has identified a gene that carries a genetic likelihood of pituitary adenomas, particularly growth hormone secreting adenomas as was my father's. I have no doubt that my pituitary adenoma has a paternal genetic link.

I would use the word "intriguing" to describe the similarities shared between you and your aunt. The similarities between you and your aunt are intriguing - not "weird."

I always feel that diagnosis lies within each person's narrative if only physicians would take quiet and uninterrupted time to listen to a person. You know your body better than anyone else. You live in your body. It is your home.

I think you have righted the direction of your medical inquiries in meeting with your PCP and defining a new approach to obtaining another medical opinion. Keep the momentum.

Above all, keep faith and hope that an accurate differential diagnosis will materialized.

Gentle prayer and a warm hug,
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : tiredredhead - 8/2/2017 8:06 AM
Alrighty. Sleep study done. Not near as bad as I thought. The doctor that did it said my sleep was fine. Any odd results she would have let the neuro give me, bit she said there was absolutely no negative findings. (I told that man my sleep was fine). One more appt at this neuros office to get my official results and copies of as much as I can talk them out of and I am DONE with this guy. The sleep study was at the same hospital that he practices at and the doc said she wasn't surprised by the lack of concern he gave my test findings.

Update on new symptoms. Hands are getting a bit worse. Kid was poking me with an earring, bless her heart, my hand didn't register it as sharp until she got aboit to my wrist. Yep, after the first pole I made jer keep going lol.

I've had two instances of dizziness while moving around. I know the 2nd one was neck related happened while cleaning my counter and had my neck sideways getting behind something.

I've had a few swallowing issues in the past. Swallowing something and it's like my throat didn't work and it slid down "choking" me. They are getting more frequent. Had two yesterday. Always liquids, never food.

Sigh. This is so much fun. I guess all I can do now is keep going and pushing and wait on this second round of doctors.
Sarah

Posted By : (Seashell) - 8/2/2017 9:10 AM
Sarah:
You have a legal right to full access of your medical records. In requesting your medical records from this inept neurologist, be polite and firm in your request.

Talk with the medical records personnel or designated department. You need not discuss with the neurologist that you are requesting copy of your records. This neurologist has leveraged his formal position of power over you in a manner that is ethically distasteful. Engage with him as little as possible.

Concerning your swallowing difficulties . . .

This, too, is likely correlated to the MRI findinfs of diffuse white matter disease. Swallowing difficulties are a worrisome symptom.

Dysphagia (difficulty with swallowing) is more problematic with thin liquids. Thickened liquids of nectar consistency are a bit easier to swallow safely without risk of silent aspiration. You will be a heightened risk for swallowing distress in trying to consume thin liquids (water, fruit juice, tea, coffee). In swallowing, tilt your chin toward your chest as you initiate a swallow to minimize aspiration risk. You can purchase powers that you add to thin liquids as a thickening agent.

Swallowing is coordinated by the autonomic nervous system. The swallowing process, itself, is a highly correographed process that requires closing and opening of the sphincters of the esophagus and teaches and the formation of a liquid/food boils passed to the back of the throat. There is nothing "simple" about the swallow reflex.

Bottom Line: Shift toward thickened liquids and stay clear of thin liquids to avoid the risk of silent aspiration. Nectar thick fruit juices, creamed soups, milkshakes, pudding. Tuck your chin ever so slightly when you swallow to help ensure that food/liquid does not go down the trachea.

Get thee to a reputable and competent neurologist or functional medicine physician ASAP. Your symptoms are worrisome.
Karen

Posted By : tiredredhead - 8/2/2017 8:02 PM
I wholeheartedly agree about not engaging this man. Going in, getting my results, agreeing with everything he says, getting my next appointment, getting records. Calling in a few days to cancel that appointment. I see my primary care doc 2 days after this appt. he will set up the referral for a new neurologist then.

I still have a rheumatologist and neurosurgeon consult pending. Haven't heard back from referral nurse yet. Today was a good day. Took the kid to the library and the park and shopping. Dead on my feet now, bit worth it. I wish I could have more good days like this, but they are getting few and far between. I have a large household and I've always been the caretaker of everyone, and now they are doing far too mich for me for my mental state to handle.

Sarah

Posted By : (Seashell) - 8/2/2017 9:28 PM
Sarah:
Fabulous. Fabulous. Nothing compares to a "good" day where troubling symptoms abate and the burden of compromised health is lightened. Reading that you had the pleasure of a "good" day and that you were able to engage in mother-daughter time with your daughter made me smile.

Three cheers to more "good" days for you on the horizon.

"A good life has elements of sunshine, freedom, and flowers." (Hans Christian Andersen, European author)
Karen

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