[Snoopy]

Hello amberlenee and welcome to NeuroTalk.

For a better understanding of MS you might look through the National Multiple Sclerosis Society website. You will find a wealth of information about the disease, symptoms, prognosis, treatment and more.

http://www.nationalmssociety.org/

the dye test done during my mri shows it's not active. I don't understand this because each day I seem to be getting worse with pain and mobility.

The Dye used with the MRI will light up anything currently active. Unfortunately, active vs non-active lesions does not mean you will or will not be doing better. MRIs do not necessarily correlate to how a person with MS is doing, sometimes it does.

Having lesions (anomaly on MRI) that is consistent with MS means damage has already been done to the Central Nervous System (brain, spinal cord, optic nerves).

In MS it is common for a person to deal with residual symptoms or symptoms that come and go. Learning to live with MS means learning to live with symptoms

There are medications that can help with some symptoms, as well as treatment that can be used to hopefully slow the disease progression. Please speak with your Neurologist about the best way to treat your disease and symptoms.

Mobility is a little different. Your Neurologist can send you to a Physical Therapist to possibly help improve your mobility. Unfortunately, mobility problems can be difficult and frustrating.

Improving mobility, if possible, take a lot of dedication and hard work on your part. Physical Therapy, exercise, stretching are all of what you will need to do to try and maintain your mobility.

The most important thing is to be safe. That may mean the use of mobility aids (cane, fore arm crutches, walker, trekking poles, wheelchair, scooter).

[SallyC]

Hi Amber, welcome home to NeuroTalk.
I really can't add anything to Snoop's super, helpful post, but wanted to
let you know that you are in the right place for support and friendship.

I hope you and your Doc can work out a plan of the most helpful meds
and PT, to help you cope with this nasty disease and to live your life to the
best of your ability.

I hope you'll stay and keep us informed of how things are going for you.
And for our support and company. We need your support as well.

[bddouglas]

Hi Everyone!

My name is Brenda. I guess my journey with all my neurological issues started a long time ago. I often feel like I am losing my mind. My neurologist suspects MS. My brain MRI is definitely positive (brain MRI from 2007 had 2 white spots) brain MRI from March 2014 now has "lots" of white spots. All of the other tests my neurologist has ordered have been normal. LP was done on June 3 and I follow up on July 24. I can access the results online and most everything looks normal. Now, I am beginning to wonder if I am losing my mind.

[Wolbachc]

Hope there is no offense to my title. This has been quite the journey and quite frankly I am weary. Today my appointment with an ms specialist said mri of brain looks like MS. Will have to complete evoked potentials, spinal tap and mri of thoracic spine for final diagnosis-or off to some other specialist I'm sure-if things get more confusing. I have a weird situation that I just go from one specialist to another and noone looks at the whole picture. When I ask them to read my log of events, they want me to embellish and then before I know it they are overwhelmed with the complexity and never hear to entire story. I am a nurse and have made documents, spreadsheets, copies of all records but it seems that everyone has their specialty that they focus on and lose site of the entire situation. There really is something wrong in our healthcare system. I started out about 2 years ago with burning soles of feet, swelling/pain/limping of each foot at different times with mri showing contusion. No injury that caused the situation. 11/13 after walking on the swollen/painful right foot, ruptured right peroneal tendon. Tendon repaired surgically 12/13. Intense right lower lateral leg pain with numbess along with increasing numbness of right foot. Sent for spinal mri 1/14-mildly herniated L4, L5, S1, S2. Leg pain then attributed to back and underwent 3 spinal epidurals for leg pain (never had back pain). Between 2nd/3rd epidural, big toe became totally numb and cannot extend toe. Nerve conduction studies show axonal and demyelinating features. Sent to 2 different neurologist and 2 neurosurgeons who say spinal nerves not compressed no surgery needed. Neurologist took their good old time and did basically no real work-up. There is more but I will get to the point. In June when I realized things are worse, I have more difficulty walking because right foot is not working and right lateral leg pain really bad and now I can no longer work but have basically not worked since 12/13, I got myself to Cornell to a peripheral neuropathy specialist. His diagnosis was small fiber neuropathy related to neurotoxic medications-cipro, macrodantin and statins with no treatment options. I also had a carnitine deficiency and was started on supplements. Diagnosis #3 was sciatic neuropathy of the right peroneal branch probably related to popliteal block done to repair tendon rupture with no treatment options. Went to new Internist who orders brain/cerbival mri about 2 weeks ago who showed numerous brain lesions along with evidence of demyelination with same type of findings in the cervical area. Do I think I have quinolone toxicity-i am pretty sure-can trace symptoms back to 2 months after taking. Again, no treatment for this in Western medicine. I am going to start glutathione infusions with an alternative doctor next week. I have an appointment at John Hopkins to get the probably damaged peroneal nerve evaluated and after reviewing my records, gave me an appointment writing "good case" and give her an appointment. If I wasn't in so much pain from the right leg and could walk acceptably, I would just give up. Any thoughts on my case would be appreciated. Sorry we are all in this club. I realize there are worse clubs to qualify for and I am grateful for the blessings I have. But, I am weary and tired. I know, I know, that is an ms symptom lol.

[Wolbachc]

Reposted per suggestion to aid in reader visibility. Hope this helps.

Hope there is no offense to my title. This has been quite the journey and quite frankly I am weary. Today my appointment with an ms specialist said mri of brain looks like MS. Will have to complete evoked potentials, spinal tap and mri of thoracic spine for final diagnosis-or off to some other specialist I'm sure-if things get more confusing.

I have a weird situation that I just go from one specialist to another and noone looks at the whole picture. When I ask them to read my log of events, they want me to embellish and then before I know it they are overwhelmed with the complexity and never hear to entire story. I am a nurse and have made documents, spreadsheets, copies of all records but it seems that everyone has their specialty that they focus on and lose site of the entire situation. There really is something wrong in our healthcare system.

I started out about 2 years ago with burning soles of feet, swelling/pain/limping of each foot at different times with mri showing contusion. No injury that caused the situation. 11/13 after walking on the swollen/painful right foot, ruptured right peroneal tendon. Tendon repaired surgically 12/13. Intense right lower lateral leg pain with numbess along with increasing numbness of right foot. Sent for spinal mri 1/14-mildly herniated L4, L5, S1, S2. Leg pain then attributed to back and underwent 3 spinal epidurals for leg pain (never had back pain). Between 2nd/3rd epidural, big toe became totally numb and cannot extend toe.

Nerve conduction studies show axonal and demyelinating features. Sent to 2 different neurologist and 2 neurosurgeons who say spinal nerves not compressed no surgery needed. Neurologist took their good old time and did basically no real work-up. There is more but I will get to the point.

In June when I realized things were worse, I have more difficulty walking because right foot is not working and right lateral leg pain really bad and now I can no longer work but have basically not worked since 12/13, I got myself to Cornell to a peripheral neuropathy specialist. His diagnosis was small fiber neuropathy related to neurotoxic medications-cipro, macrodantin and statins with no treatment options. I also had a carnitine deficiency and was started on supplements. Diagnosis #3 was sciatic neuropathy of the right peroneal branch probably related to popliteal block done to repair tendon rupture with no treatment options.

Went to new Internist who orders brain/cerbical mri about 2 weeks ago who showed numerous brain lesions along with evidence of demyelination with same type of findings in the cervical area.

Do I think I have quinolone toxicity-i am pretty sure-can trace symptoms back to 2 months after taking. Again, no treatment for this in Western medicine. I am going to start glutathione infusions with an alternative doctor next week.

I have an appointment at John Hopkins to get the probably damaged peroneal nerve evaluated and after reviewing my records, gave me an appointment writing "good case" and give her an appointment.

If I wasn't in so much pain from the right leg and could walk acceptably, I would just give up. Any thoughts on my case would be appreciated. Sorry we are all in this club. I realize there are worse clubs to qualify for and I am grateful for the blessings I have. But, I am weary and tired. I know, I know, that is an ms symptom lol.

[Wolbachc]

Originally Posted by bddouglas

Hi Everyone!

My name is Brenda. I guess my journey with all my neurological issues started a long time ago. I often feel like I am losing my mind. My neurologist suspects MS. My brain MRI is definitely positive (brain MRI from 2007 had 2 white spots) brain MRI from March 2014 now has "lots" of white spots. All of the other tests my neurologist has ordered have been normal. LP was done on June 3 and I follow up on July 24. I can access the results online and most everything looks normal. Now, I am beginning to wonder if I am losing my mind.

First let me say we have not lost our minds. I feel the same way too. Also in the process of diagnosis. My question to you is how bad the lumbar puncture was. Had one as a child 50 years ago and I know things probably are different now. Remember screaming my head off. Mine is scheduled for tomorrow and I am so scared. How bad was it? Just your honest opinion. I know everyone's experience is always different. Thanks and my heart goes out to you.

[bddouglas]

The LP was not bad. It was x-ray guided and was relatively easy. I only had mild head pain the next day that was relieved with laying back down. (I suffer migraines daily anyway). I wish you the best of luck.

I had my follow-up today and it got even more confusing and I have been referred to a MS specialist for a second opinion.

[Snoopy]

Originally Posted by bddouglas

I had my follow-up today and it got even more confusing and I have been referred to a MS specialist for a second opinion.

I hate it when medical issues become confusing

Good luck with your second opinion appointment.

[zinson]

Hi, I was just diagnosed with cervical spinal stenosis. I'm 60 year old male with no history of back pain and started having what felt like a normal crick in my neck that usually goes away. After 7 days of no improvement, I went to an orthpaedist who had an MRI done. The notation reads:
"C5-C6 Disc space narrowing central paracentral shallow broad disc osteophyte. High grade bilateral foraminal stenosis with uncinate hypertrophy. The midline cord signal abnormality is visible here with a somewhat defined margins possibly myelomalacia rather than edema. Subarachnoid space is effaced with mild stenosis.
C6-C7 Narrowed disc with shallow broad disc osteophyte right asymmetric. Subarachnoid space is effeced at and just above the disc space. Foraminal stenosis with uncinate hypertrophy is high grade right and moderate left."

Other areas were commented on as well but nothing as serious. My symptoms include pain in upper right side of my back and minor occasional tremors/spasms from back, chest and arms. What really alarmed me though was significant strength loss in my right tricep. I can usually do 20 push-ups no problem but could barely do 3 to 5 this AM. Right bicep is ok. Anybody out there with a similar experience that has any advice as how to proceed? I had a massage yesterday(did nothing) and seeing a chiropractor today. Then seeing a spinal neck specialist on Monday.
Thanks in advance!
John

[Chemar]

Hello John
I have copied your post to our Spinal Forum as this is the Multiple Sclerosis forum that you have posted on

Here is the link to your thread on the Spinal forum so you can check for replies
http://neurotalk.psychcentral.com/sh...d.php?t=207325