MS or a cervical 5-6 problem

Hello @ralphysmom

It sounds like you have been struggling with some difficult symptoms for quite a while now. You seem to have had a lot of tests and seen a lot of specialists without getting an answer and a treatment plan. Many of us on Connect have had this experience and understand how frustrating this is.

If I were in your place, I think that I would seek a second opinion at a major medical center that is research-oriented and multidisciplinary. I'm thinking of a university medical school or a facility like Mayo Clinic. These health centers are involved in a lot of research and also see a lot of patients with hard-to-diagnose problems.

Do you live near such a medical center? Would you consider a second opinion?

Thank you for responding. I went to the Mayo Clinic in 2018 at the onset of this. I was dx'd with POTS but my sx's seem so much more than that with some sx's not applicble to POTS. Since then I have been told I dont have POTS from 3 different care providers. Maybe as time has gone on there would be more insight and a look at the characteristic and pattern of how it has evolved. I often wonder if I should go back but I dont know how that will be received.

@ralphysmom
A return visit is worth a try. Perhaps you could request a video visit, sending your reports and change in symptoms.

Persistence is important when you are having trouble finding a diagnosis. Have you had a lumbar puncture?

TY hopeful33250..that is a good idea. Yes, I feel I have but when you live in the middle of the Pacific Ocean it is hard. At that time they didnt allow video visits either. TY for the encouragement, truly appreciated. I have ten yr old twins that need me in their lives. I have had a lumbar puncture and clean both times but I think lack of enough CSF for the second. "Insufficent cells". Done in 2018 and this past May. I have been reading about where the lesions on MRI need to be located and the characteristics to be positive for MS vs other differential dx's. I wonder why they only image brain and cervical when it can show up anywhere down the cord.

If the injection worked the first time, did that have diagnostic significance?

I actually have some of the same symptoms and had an abnormal brain scan but also have spinal cord damage in neck and myelopathy that causes burning pain in neck and shoulders and sometimes left side of face. And spinal stenosis as well as fractures. Have nerve pain in hands and feet and legs feel funny after lifting. Also episodes of dizziness and nystagmus that was investigated for autoimmune reaction to cancer.

I guess my point is that these symptoms can be caused by many things and often it is many things all at once, which makes diagnosis for insurance diagnostic codes difficult! I do have a lupus diagnosis, but I think the reality is less defined. Is your ANA positive?

I did have treatment for Lyme which lessened the burning paresthesias, and I did an elimination diet with a doctor that resulted in giving up dairy, gluten and a few other foods. That helped more than I expected.

My daughter is always after me to pursue MS diagnosis. My eye doctor questioned why I had never been diagnosed, and my rheumatologist said I was "MS-y". But I ask myself: what would be the end result of that diagnosis? In this time of COVID, or any time really, I would hope to avoid immune suppressants. I cannot take prednisone- it affects my heart. So what is the point?

Have you tried gabapentin or Lyrica or any other treatments for pain? Have you seen pain management or PT? I hope you can find help through physiatry/pain management or even alternative therapies. It is a long road and many on here have been on it.

One other thing: tai chi helps me a lot! Just as this experience of pain and sensations can have many causes, I think the therapeutic response has to be from many directions at once. Anything that can even lessen it around the edges, so to speak, is a plus.

@ralphysmom Andrea, I would like to tag one of my fellow mentors, Chris @artscaping who can relate her experience of air travel soon after cervical spine surgery. Since you are in the decision process now of where to have your surgery, this may give you some valuable input.

Jennifer

@ralphysmom Good evening Andrea. This is Chris, Jennifer's fellow mentor, and also a cervical spine surgery recipient. My claim to fame today is that number one.......I have lived in Hawaii. I understand the medical service situation as I lived next door to the technician in charge of imaging. And across the lawn was one of the nurses.

Most important for what Jennifer has shared with me is that you are facing a thoracic spine surgery very similar to mine, complete with titanium cubes to hold everything together. Your distance from the islands impacts your decision of a surgeon and surgery center.

I did not have my surgery in Hawaii and then travel back to the mainland. What happened was that after moving to the mainland, I had my spine surgery in California and then moved to Minnesota. Sort of the same thing. The immediacy issue was the severity of my condition. Scheduled shoulder surgery was canceled because of the spine issues.

What needed to happen did happen. I was actually flown to Minnesota a few weeks after the spine surgery. A local airline, Sun Country, was apprised of the situation. First of all, they have more flights during the winter as MN folks head south for the warmth and sunshine.

After contacting them and explaining the situation, ( that I would be flying post-surgery with a comprehensive neck brace) they did everything they could to ensure that I had a safe and reasonably comfortable flight. One of their staff met us in the parking lot with a wheelchair.. (I had a friend drive me to the airport) I was seated in the front in a row with the most leg room and made quite comfortable. During the 3-hour flight, the attendants were very helpful. Upon landing, I was wheeled out to meet my life partner and once again escorted to the car.

So, if you can find the same sort of transportation assistance, it might be supportive enough for you to have your surgery on the mainland.

I do admire and respect your efforts to be with your children on the island. I also think it may now be possible to fly from the Big Island to the mainland directly without a stop in Honolulu or vice versa. And I also want you to know that we live about 3 hours from Rochester and that we are very willing to support your MN stay in any way possible.

My best to you and hats off to my fellow mentor. She is just amazing and so helpful.

May you be free of suffering and the causes of suffering.
Chris

Chris, first.......ty for offering advice and support the MN stay. (hint and secret: I sort of fell in love with Mankato) having Mayo there is a plus also.

I would rather have surgery there especially if can be seen earlier than later. Im hanging by a thread and had just completed lots of travel. I had my appt with Mayo doctor yesterday and she said she had some dates left in October but didnt know exact ones. I phoned the scheduler and she hadnt received the message or note yet from the doctor of surgical hours needed. I am going to call Monday and see if they could give me dates. I also wonder if being out of network with Mayo might slow the prior auth down. My insurance always pays and will pay out of network but I will have to pay as well and there is a cap.

I am grateful for Jennifer. She has helped me tremendously emotionally and as a source of knowledge.

TY again for reaching out. I could let you know what the logistics entail with traveling from info received from visit yesterday.