Avatar universal

So many symptoms , too many Drs , NO help. Headed to university

Hi there , I've posted couple other places ( Nuro area)

My chronic pain / fibro has taken turn and I know it's bad but you would think Drs would. Here are symptoms that have come on strong and quick.

Spasms especially R calf
tingling crawling skin
twitching like a pulse that you can see
biggest worry alot of muscle atrophy
, slightly off balance
neck atrophy with spasm and muscles seem to disappear , either fat gone or muscle , can see ribs , opening eyes wide and they go down on their own,
some spastisty in feet ,
breathing has changed ( some of this smoking I'm sure)
Chest muscles gone

History : age 41 female  
Chronic pain for 10 years
Back surgery 2010 , l4 and 5 with drop foot. Was sucessful , good recovery on herniations
I have been a 20 yr smoker oddly enough a tennis player with always good muscle tone

Test done:
All blood work ok including cpk levels
Full spine and brain MRI clear EXCEPT hydromyelia in middle of spine
EEG normal
Passed Nuro test in office with good strengh.

Feel confident ( Nuro dr and Nuro muscular dr ) that no ms and ALS
So confident that Nuro Musclar Dr did no more testing ( no muscle biopsy )

Good things:
Not much weakness , just pain level up from lack of muscle especially in joints
Being sent to the university of WA.

Long term meds;
Nexium ( off of now)

I know the difference of made up symptoms of fear and real symptoms , I also know that many many it takes years to figure this out. But for 6 months these have hit hard.
9 Responses
Avatar universal
It all sounds very distressing and frustrating. I feel for you. I'm glad you're going to a university. I think doctors hold back sometimes because they can't give any answers or just have no clue. There are some real oddball conditions out there many know nothing about. Has anyone looked into Myasthenia Gravis? There are mitochondrial metabolic disorders, systemic metabolic disorders, malabsorption syndromes, etc.

It's hard feeling like the hot potato patient getting bounced from one doc to another. Especially when they all have their own personalities and preconceived notions about patients.

I really feel for you and hope you get some answers. There is always the Mayo and Cleveland Clinic option. In your situation, with the speed this has occurred, it might be worth looking into for a quicker dx.
Avatar universal
So, not being rude or anything, why are you posting on MS forum if no suspect of MS?  From reading your symptoms, I don't see the possibility of MS although some of our other patient members may.  

Good luck and welcome to our corner!
Avatar universal
When someone starts out with not to be rude , they kinda know there being rude. Id rather not be in any corner with the amount of symptoms. These groups are suppose to be set up to throw questions out to different places since the Drs can't get it together.  I'm headed to the university and was only wondering if anyone else had certain symptoms. Ironically the ALS group is as questionable especially with no weakness you should not be on their page. I guess the good luck and welcome makes up for your post.
198419 tn?1360242356
HI Bfoyd,

Sorry for all you are going through. Your right - we are set up that we can come to any forum regardless if we are seeking support, info, or experiences. I know Sarah means no foul for sure - she probably just more-so wanted to express MS not being one more thing for you to worry about.

Having said that - I too feel what you've described is not concerning for MS in my opinion, I can relate with your desperate want for some solid information.

What you've given us here is an excellent timeline, and I hope you have copied it, and saved it on another program so you can bring it with you to the University. There, I hope you get proper care, and some cause to what you are experiencing.

I would only add the times and years, and be sure to express to your doctor what your life was like before this all began. And, stick with the top 3 main problems you have, i.e., you mention muscle atrophy.
Hope your appt. goes well :)
738075 tn?1330575844
Hi, there, and Welcome!  Have your doctors talked about surgery?  That's one way to deal with hydromyelia, if your symptoms are bad enough.

Surgery is the primary method of treatment for hydromyelia and syringomyelia, and it is generally reserved for those individuals who have significant neurological problems. A variety of procedures for repair of these conditions exist whose goal is to restore normal flow of cerebral spinal fluid. These procedures include needle removal of the fluid within the cavity, placement of a shunt to divert the flow of CSF away from the cavity, or repair of the underlying source of abnormal CSF flow. The decision to operate is generally based on the severity of symptoms and the findings on MRI or other imaging studies. Patients are followed closely after surgery for signs of further neurological impairment. It is possible for some patients to require more than one surgery.

(Lifted from )

A lot of uncomfortable neuro symptoms, I see.  I hope you find relief soon.  When is your U of WA appointment?

Sending good thoughts...
738075 tn?1330575844
Sorry, the link didn't post. Try sehati dot org.
Avatar universal
Good morning , wanted to give an update since I've recieved more common sense info from some forums.

My family Dr is at loss. She's ordered blood work for parathyroid now , calcium and Lhym  (SP?). Two nuros say no Nuro prob or muscle prob. How absurd can that be. They would like to put it off on back surgery that has never affected me in 2 years. The twitching ranges from fast pulse like to slow heartbeat and is everywhere. We went camping and lip twitched so bad next thing I knew I had saliva running down corner of lip.

The atrophy is getting very noticeable with divots in all joints and locking knees to keep balance. My neck looks like I'm a size 2 now. Exercise which has been so helpful in chronic pain is Exausting.

I do not like the many new black floaters in eyes and will be getting eyes checked next week. My eyes are so tired. When I open wide they go down on own about halfway. Im really thinking tho its because of dry eyes and straining all the time from using iPhone.

Brain MRI showed nothing only the hydromyelia on spine. How does someone have so much Nuro symptoms but yet no response from Dr of any concern. While I would like to trust them how sick do you have to be. How skinny do you have to get ( not much weight loss just complety looking body ) little appetite or thirst. I know this can be sign of nerves because mine ate frayed. The only thing that has been causually thrown out is BFS from back surgery. If the hydromyelia is causing this why would it be so dismissed as normal for back patients.

Can fluid be on spine area and be a "lesion" Im hating trying to get medical help online as Dr Google has way to many things that go with these symptoms from very simple things to serious things.

You constantly see the frustrated people put they've been given run around for years until dianosis is done correctly. The drs have such an arrogance of confidence with test done so far.

I've had no spinal tap done or muscle biopsy which I think it's crazy I have to wonder why not. You just don't go asking for major test or they really get offended.

At a loss. Posted in a few places with great responses but at a loss. Thanks
Avatar universal
Thank you so much ladies. It seems can be a list a mile long dosent it. I will keep you posted when I can get to university. Made big mistake of getting second opionion from small town Dr. The university looks at it as a third and not as pressing. But very much will get to bottom of it. The Drs can say all they want about the Internet and forums but I suggest they get on them themselfs. What talented educated and caring people.
Avatar universal
Thanks for link. I sent that Dr a email. Was so surprised he had a contact email!
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