confused doctors

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confused doctors

Postby Teresa » Fri Jun 17, 2005 10:18 am

I was diagnosed last year, by a Neurologist; who at first told me I was too old, I was 52 at the time. After the MRI, showing 6 lesions, he called to tell me the news. I have other medical conditions: Reflex Sympathetic Dystropy and Fibromyalgia. I refused traditional injectional medications. I have flares on and off. We changed insurance companies to Kaiser (California). I made an appt with a Neurologist, saw him Wed. Big news from him: He doesn;t think I have MS??????????? He said he is not convinced by the MRI. I am going to have a follow up sometime in the next few weeks. He said the pain in my feet and legs is not consistant with MS. He said very little pain with MS? Who is wrong??

I am on Low Dose Naltrexone, 3mg nightly. I went on this med about 3 mos. ago. Dr. Neal Rouzier, Preventative Medical Clinic, Palm Springs, California. Within the first 30 days, headaches were gone. More energy, less fatigue. I just feel better. I refused to stop this medication.

If anyone has gone thru this type of confusion, please advise. This news has sent me into a pain flare that is difficult to bear. I do not use pain medication, other that anti-immflamitors, Naproxen.

I feel crazy about now.

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Postby jaycee » Fri Jun 17, 2005 10:40 am

A GP once told me he just diagnosed someone who was in his sixties. I'm sure you can't be "too old." When I was diagnosed, my neuro told me he could not dx with MRI alone but with my other symptoms, he was pretty sure. Pain is certainly consistent with MS. I've had doctors tell me differently but ask on this site and you will find people with pain. Doctors are all confused as far as I can tell. They make bunches of money but you are still on your own.
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Postby CCmom » Fri Jun 17, 2005 10:53 am

My son has had so many different diagnosis' that we have lost count. He's 17 years old now, this started at age 13. First, we were told that he had multiple inoperable brain tumors. Then, acute disseminated encephalomyelitis. An MS specialist was called in on the case, but told us there was "no way" it was MS. 6 months later, it was MS, with nothing to confirm the diagnosis. He was diagnosed with MS because it reoccured, and because his lesions "looked" like MS lesions.

I suppose that is what causes so many people to be in denial, wouldn't you think? If the doctors aren't certain, how do they expect you to be?

My son uses LDN and Copaxone. The LDN seems to help him more than any other treatment he has had, including Avonex and Rebif. Right now, he is in Florida enjoying 95+ degree weather with heat indexes of over 110, and it would not be possible without the LDN.

No matter what your end diagnosis is, if the LDN helped me as much as it has helped you, I would continue to take it as long as I could get someone to prescribe it. Our neuro will only prescribe if we use Copaxone along with it. We are going along with him for now.

Take care, and good luck! Just wanted to let you know that I understand how you feel!

Kim R.
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Postby Bobble43 » Fri Jun 17, 2005 2:43 pm

I cannot imagine how frustrating your situation must be!

Is this neuro. an MS Specialist? How many MS patients does he treat?

I was diagnosed at age 60 by a PHD MS Specialist (head of an MS Clinic) This Dr. was so different from the general neuros (2) that I had seen over the course of 4 yrs. He was very well informed--about the disease, latest research, comparisons of CRABS, etc.

I had 10 brain lesions by that time----started out with 4. He looked at the total picture. Two episodes seperated by time and space, symptoms waxing and waining for years, test results etc. He has diagnosed folks over the age of 60 and also some children (under 17).

There is such a thing as late onset MS---also, it can be lurking for years, undetected. By the time you are diagnosed, you may be out of the so called age frame.

I hope you can find a neuro. that has the confidence and expertise to diagnose those who don't fit in the box, or don't fit an exact mold.

Bobble43 :)
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Re: Confused

Postby NHE » Sat Jun 18, 2005 3:49 am

Teresa wrote:He said the pain in my feet and legs is not consistant with MS. He said very little pain with MS?

Although I'm not qualified to give medical advice and you have not specifically described the pain you experience, I would recommend that you find a new doctor. Neuropathic pain can most assuredly be associated with MS. My, how I wish that wasn't the case. I've had chronic pain that fluctuates in intensity in my foot for 5+ years. On some days, it's negligible, yet on others it screams at me. I'm sure that there are many others on this forum that could share similar experiences. You may want to read an article from the National MS Society titled When Is A Prickle A Pain. It discusses the different categories of pain that are known to be associated with MS and medications that could be helpful for each of those categories. There are also lots of other good resources on the net regarding pain and MS.

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Postby Teresa » Wed Jun 22, 2005 7:54 pm

I want to thank all of you whom replied. I do not think this current doctor is correct. I went to him for a follow up MRI, I had the first in 4-04. He certainly confused me. Eventho I have Medicare, my husbands insurance thru his work (California) is Kaiser. I figured: why not have the insurance pay for it this time. This is how I met up with this doctor.

I have the highest rated pain condition: Reflex Sympathetic Dystrophy. I was diagnosed in 1998, after a traumatic injury. It has spread dramaticlly.
The new pain was pain in my feet and lower legs. This is a totally different pain. Also headaches and vision problems, balance problems and problems with names and numbers. I have IBS, but it got worse. GERD started, I had swolling problems, esophogeal spasms, to list a few new symptoms. This is why I went for the first MRI.

I refused traditional medicines, because of my RSD and the problems with injection site reactions. I am still on the LDN and will continue until I feel it isn't helping me anymore. So now the doctors are asking me: Why have a follow up MRI, if you aren't going to take the meds? It's my body, I answered and I have the right to see if this is spreading. I may consider a change in meds, if I am put into that postion.

Again, thank you all. This is a great site and I wish you all well.....

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