Some advice, please, on referral for undiagnosed illness

  • Thread starter Thread starter minstrel2
  • Start date Start date
M

minstrel2

Guest
Julie, it sure sounRAB similar to symptoms I had from spinal cord compression in the cervical area. Sometimes the MRI doesn't show everything that is actually going on. If you haven't yet, check the spinal cord disorders board and read threaRAB on spinal cord compression. Keep pressing for the right Dr.
 
Hi ,
I apologize in advance if this is lengthy or parts are not related to main board topic:
I have an undiagnosed problem and am seeking referral to a Mayo Clinic location near me. I don't get the problems I am running into--
Back in Dec. 09, I started having neck pain and nurabness in 4th and 5th fingers in left hand. In Feb. I had MRI; they found a bulging C5-6 disc with some nerve root impingement. I had traction and a nerve root block which did not help. The pain started to spread through my neck. I had an EMG which was negative.
In early April one day about 3 1/2 weeks ago, I noticed a sudden burning pain in back of neck. My legs began to go rigid with walking (think Frankenstein walk), I started having a "falling sensation" like my feet were going to fall through floor, and burning /tingling hanRAB and feet.
I could not get into my primary or neuro, so went to walk-in and ER. They told me to wait to get in with primary. She did a complete MRI with contrast - brain, cervical, thoracic, lurabar. They only found the same bulging disc, but now narrowing of cervical spine.
She sent me back to a new neuro who diagnosed me with neuropathy of hanRAB and feet. She did labs for diabetes, Lyme, thyroid, and muscle protein -- all negative.
I had asked drs if they thought I could benefit from going to Mayo - they see more unusual problems. They both agreed - but now that I want to make an appt., won't give me a referral. The dr. said she now wants to do a spinal tap. I get the feeling she is taking wild guesses. One dr keeps saying my symptoms don't "match" the test findings; another said it's not related to my c-spine issues.
Have any of you experienced this? Mayo Neuro will not set up an appt with me until one of my drs calls them for "criteria purposes." Don't know what that means - should I have the spinal tap here? Or press further?
Thank you,
Julie S.
 
Minustrel- Since you had c7 - - t1 - that included the c8 nerve root which is more or less the pinky - but i also heard that t-1 can cause rhe ounky thing - ? Have you heard that or no? & how was your surgery -? Any side effects ? Front & back ? Or just front ? Did you show any pressure immediately like after your 6 week check up on the disc below your acdf?
 
I have no idea what you have.

With that said, so many things can cause neuropathy----I'd say do the spinal tap. The risks of serious complications are rare. And it will either rule out or confirm many diagnoses. However, I also think thank that it would be wise to press further at the same time. This is YOUR health and at the end of the day YOU are the one that has to deal with the problem.

I'd recommend compliling all the things that has nerve pain/neuropathy as a symptom and and printing it out and crossing off as you read each of the causes or symptoms. I may give you more of a feeling of control over the situation. Because it doesn't sound to your doctors like it's a disc problem. I personally don't think it is either. But I could be wrong. And you know your medical history more than anyone on here.

In the meantime why don't you look at alternative things you can do? Change of diet, vitamins, acupuncture, anything that could help would be worth a try right? At the very least you would have tried something different.

Good luck.
 
Hi Julie,
I just wanted to say that in 2007 I was diagnosed with Severe Cervical Spinal Stenosis. To make a long story short (c5-7 were bulging causing decompression on my spinal cord). My symptons were lower back and were not typical of SCSD. My Primary first found it on an xray he did. The MRI followed and I was referred to a neurosurgeon. My PCP told me I had to have surgery immediately cause any further damage (a fall or someone rear ending me or just bumping into something) could cause me to be paralysed. That based on the xray. I saw the neuro very quickly after that and he said the exact same thing. These are both top rated drs. Nuero Dr. did an anterior fusion from c5-7, that was a two level fusion - he cleaned the area out and inserted a cadaver bone and placed plate and screws. My pain was gone immediately. It wasn't long before my neuro told me the fusion was healed and the surrounding bones were healed - he showed me the xray. I had about 6 weeks of physical therapy. I did have some minor tingling in my arms, which went away. They told me the nerve repairs itself at a very slow pace, but I was feeling very good for awhile, no symptions.

Now two years post op, I'm experiencing shoulder, neck, arm and lower back pain. They found a bulge at c3 and c7-t1 (above and below my fusion). My neuro dr. did not think it would be neccessary to immediately have surgery, but wants to keep his eye on it. I'm scheduled for another MRI, this one for my back. I also have an appointment with a pain specialist. Knowing they are there and I can call is such a relief. I trust them both. They haven't named this yet, and the pain is not as severe. But I think I found through them, that you don't take any chances with neck/spine/back and nerves.

My point is that I'm very happy with my dr. and the referral, but maybe ask your primary for another referral or go find a different primary.

I spent three years looking for a primary before I found this one. No body listened, but they took my co-pay. This one was the only one who asked for an xray. He's very cautious with my condition, as is the neuro. I think I hit the jackpot.

Good luck. In your condition, you shouldn't have to get the run around.
Take care.
Swartzie
 
A consultation with a good Neurosurgeon or Orthopedic Spine Surgeon may be the place to start to rule out any correlation between the findings and your symptoms.
 
I have these same symptoms with the fingers . Have you gone to mayo ? How are you ? Please post us and let us know - my symptoms come and go
 
I agree you need to go either Mayo or some top notch facility. Since you have gone undiagnosed you need to be seen at a teaching hospital. I agree when your regular doctors cant diagnosie you you need to be seen at a large facility that has more experience and has probably seen things the regular doctor does not see on a routine basis. My philosophy on doctors is you go the best of the best for treatment. Good luck.
 
You need to see an orthopedic surgeon right away. You can get a referal from your primary doctor. They may refer you to a pain management clinic first if you have not gotten the steriod injections first, but dont let these neoro people or regular Md/s do anything o you .... experienced!!!!
 
I just had ALIF fusion with posterior screws, I am feeling great. It has been about three weeks. How long wil it be before I can get back to my regular life? Bending, twisting, laundry, etc.???? I dont have another post op appointment for 3 more weeks...???
 
MjML I was scheduled to have both front and back surgeries, but he was able to stabilize everything from the front, which was a blessing, since it only took 3 1/2 hrs instead of 5 and no back incision, etc. My fusion has been very successful, and no problems either above or below. I had major problems with my gait prior to surgery, and still have some, especially first thing in the morning, and or if I'm really tired, but that has improved also, especially with therapy. My compression lasted over a year, so my nerves were really whacked. I am still improving though. I have parasthesia, etc., but I can cope without medication.
 
Hi. I had burning sensations down thru my left arm mid April. It seemed to last approximately 1 month and neck pain existed. I believe it actually started one day as next pain and the next left arm, then the right arm. I ended up having two MRIs. History: I was diagnosed in 2007 with Cervical Spinal Stenosis (narrowing of the spinal cord and decompression). It took 3 years and the right primary doctor to get some help. I had an anterior fusion from c5-7 with a metal plate. Now: I have a bulge at c-4 and t-1. I saw my neuro and he said he was not recommending surgery at this time, but it could be necessary in the future. I lost my balance last week for no apparent reason, so I have to be careful. I think clumsiness is a symptom. Anyway, I feel fine now, but once the pain starts, I seem to have it at least for a month and Advil becomes my best friend. I actually think I overdose on it. Our symptoms are very similar. How much pain are you in? I have been to a pain specialist and I also have severe arthritus in my lower lurabar. Call the mayo and see if they can get you approved on insurance. I really trust my primary and neuro and once I was in their care, I started feeling so much better. All I have to do is call my primary and he gets me in right away. I've been with him a long time.
Good luck.
Swartzie
 
I had an ACDF in 2006 and I still make sure to be careful with my neck. I bought a panoramic rear view mirror so most of the time I don't have to turn my neck too far to back my car up or make moves in traffic. I bought inflatable pillows for use on an airline so if I fall asleep my head doesn't fall to the side, etc. You have to move forward carefully for the first year and then after that keep up with life long "good ergonomics' (not holding the phone between the ear and shoulder, not straining too hard to look up such as when watching fireworks or something - better to position your body so your neck stays comfortable, etc)
 
Back
Top