Nerve rebuilding follow up and update

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

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

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.

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

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

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

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.

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

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

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