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Avatar universal

Severe Arm/Hand/Shoulder Pains + Unresolved History of Neuro Symptoms

I've come and gone from here over the years as my symptoms have come and gone, but since I have a disturbing new set of problems and I'm not sure where to go, here I am again.
The shorthand of my story is:
-Crazy MS-like symptoms appeared in 2010; I was 32
-MRIs, EMGs, blood tests showed nothing and so I was sent away
-In 2011, more and different symptoms sent me to a new neurologist, neuro-ophthalmologist, and more doctors, again with few findings, except: 1) "blurry" optic nerve disc in my right eye; 2) abnormally brisk bilateral knee-jerk reflexes; 3) cervical arthritis
-The docs sent me away suggesting I should come back for a follow up if a) I become incontinent, b) I have double vision for longer than 1 week, or c) I can't walk for longer than 1 week.
-Several months after the last visit, I started getting torturous "cluster headaches" in my right eye almost daily.  They stopped after one month.
Most of the symptoms I had have improved, although I still get a lot of tingling and electric-shock sensations, my vision blurs on and off, etc.  
But a few weeks ago, I woke up with a dull ache in both of my arms, shoulders, forearms, fingers, chest and lower jaw.  It felt like it was deep in my bones, and became unbearable.  Painkillers did not work.  It has happened 3x now.  
I just realized that the arm/shoulder/hand pain is a lot like the pain I had in my right eye...over 5-10 minutes there is a dull ache and then within a minute or two, it's a throbbing, deep pain.  Since I know I have cervical arthritis (at 35?!), I am inclined to investigate that first, but even for that, I am not sure what type of doctor to go to.  Or if there is any point--I guess at this point all I'm trying to do is find out what is wrong with me and I guess treat these acute episodes of unbearable pain.  Spinal surgery at my age doesn't seem like an option, even if that were the cause.  I just don't know what else to do. I can’t live like this forever.
4 Responses
351246 tn?1379685732
MEDICAL PROFESSIONAL
Hi!

I am sorry you are going through so much at such a young age! Yes, I also partially tend to agree with you that compression of spinal nerves in the cervical (neck) region is the most likely reason for your symptoms. Most symptoms match the symptoms caused by spinal nerve compression like pain/tingling numbness along arm/hand/shoulder etc. However, blurred optic disc or papilloedema cannot be explained by this. Hence, there is a possibility that you could be suffering from benign intracranial hypertension (BIH), which occurs due to raised CSF pressure.

To diagnose the exact cause, you need to consult a neurologist.  I know you have been consulting several, and had a negative MRI in 2010, but you need to take this up with a neurologist and think in lines of cervical spinal nerve compression or BIH. Hypothyroidism, hypoparathyroidism, adrenal insufficiency are a few things I would recommend you get investigated for. These can precipitate BIH. A spinal tap is a must both to diagnose the condition and to treat it.  

If it is BIH, it can be managed with medications. At times shunt surgery is done. If a cause to BIH is diagnosed then that needs to be treated.

If it is cervical spondylitis, then this can be managed by a combination of medications, physical therapy, manual therapy, swimming etc. You could wear a corset to support your spine.

Other than this, I am sorry there is nothing much which I add. Please discuss these possibilities with your neurologist. I sincerely hope you will find this information useful in your journey towards better health.

Hope you get well soon! Good Luck and take care!
Avatar universal
Wow, my heart goes out to you and prayers. Sounds like you've done everything you should. I have neuropathy which is idiopathic in nature. I have burning pain, needle like sensations, muscle weakness/pain that, at it's worst, can be all over my body - literally head to toe. Like you, all tests came out negative. The only thing I can suggest is that perhaps you can see a neurologist at the University of Pittsburgh Medical Center, which is considered in the top ten of neurological centers in the nation. Maybe around 200 miles from you. Keep pursuing and pushing for an answer. So MRI's were done of all sections of your brain and spinal cord and still nothing? Best of luck to you.
Avatar universal
To whomever may have an answer...I'm back.  It has been about three weeks since this last happened to me, but it happened again last night.  I awoke at 1:30 a.m. with mild aching in my arms--too mild to even notice at first--and then the pain slowly built into a severe pulsing ache in both of my arms/hands/shoulders and a severe aching in my chest, as if it was cracking open.  Again, nothing helped.  I can't live like this.  I am 35 years old; I just can't reconcile living another 35 years this way.  The pain is severe enough to have me fantasizing about...well, not good things.

Anyway, Dr. Mathur, if you are still here, I am wondering...do you think it would be worth seeing a spine specialist about this, or do I really need to go back to another neurologist?  The two I saw over the past 3/4 years gave me so many tests and then ended up dismissing me.  My anxiety and depression over these experiences really have me wanting to find some alternative to a typical neurologist because, frankly, they just seem completely uninterested in "the case" since their tests don't show much.  Is there any alternative?
351246 tn?1379685732
MEDICAL PROFESSIONAL
I see that you get up with this pain--it can be due to poor posture while sleeping or a sleep disturbance like restless leg syndrome affecting your arms. So, yes, consult a spine doctor and if need be a sleep specialist. Also, rule out vitamin B12/vitamin D deficiency.
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