[bdm92]

For about 2 months now I have been very fatigued, muscle pain in upper legs and upper arms and in my neck. I had blood work done and had positive ana with homogeneous pattern. So now I am seeing a rheum next week.

In march of o8 I had a cervical fusion with titanium plate but the fusion is coming along very slow the doctor said after looking at the last x ray.
Also in Aug of 07 I had a myelogram that went very bad, the doctor inserted the needle at too hifh of a level on my spine and hit my spinal cord, it was instant pain from the waist down I won't go into all the details but I did not walk for a week and had the worst headache of my life. I now walk fine but still 10 months later have alot of pain and numbness in my leg and foot that never has went away.

Also in Feb of 07 I had a microdisectomy on L5 S1.

I am now all the sudden having these burning pains at my insicion sight on my neck, it is not infected it is healed fine, but these pains feel like someone is stabbing me with a needle, it comes and goes but hurts alot.

My aunt had ms and my moms cousin had Lupus. So I am a little scared.

Does any one have any thoughs?

Thanks Bobbi

 

[Maia]

It sounds like you have really been through a lot these last few months.

Did you have injuries to your back that caused the need for the surgeries?

The positive ANA - do you know what the titre is? The higher the titre the more likely something autoimmune is going on. It must be somewhat high given the fact that you have been referred to a rheumy. That doctor will undoubtedly do a thorough exam, and be interested in the family history as well as your recent and distant medical history to help him/her decide the liklihood this is due to an autoimmune cause. You will probably have more blood tests done too before any sort of diagnosis is given.

Best wishes for a good upcoming doctor appointment with answers and help coming very soon.

 

[bdm92]

pos ana

Hey thanks for responding. I do not know the titer, they did not do one for what ever reason all the lab did was the pattern which was homogeneus.

And my surgeries were due to injuries.

I am just a little freaked with the symptoms and then the pos ana, I can only assume it must be something, and most of the autoimmune disease I have been reading about all sound like alot of pain. I have already done the neurontin and lyrica in the past and the side effects were too much for me. I have also had alot of steroid and hope to not have to go down that road again.

I will post again after my appt.

Thanks again,
Bobbi

 

[bdm92]

first visit to rheumatologist

Well I went to my first visit and this is how it went,
The doctor asked me about 10 questions and after the second one he said " by the way this is secondary fybromyalgia" then asked some more questions and then did a short exam.
I thought to my self "well this is great he is diagnosing my before my exam evan starts" he said this is all due to my neck injury and surgery in March. When I asked about the positive ana he said he hates those tests and they don't mean anything to him. He then told me this is NO WAY Lupus, just no way. He didn't even ask me about the vision problem that I listed or the heart flutters I feel sometimes. He just said 2009 would be a better year for me than 2008, gave me flexeril, tordal, and lortab, which I told him I had already taken all of those in the past. He also said that alot of this can stem from the lack of sleep I get.
Anyways when I left he told me to go to the lab, so I did and when the lady was taking my blood I asked her what tests these were and she said that there were 4 tests and they are all tests for Lupus, so I am totally LOST right now. My whole body hurts, even pains in my chest, I am thinknig I will get a second opion, what do any of you think, who have had experiences with rheumatologists in the past?
Bdm92

 

[cath]

HI bdm,

Well, I certainly wouldn't give your doctor an "A" for communication skills and bedside manner....

Whether he knows his stuff or not remains to be seen.

From what you describe about your symptoms, I do understand why he is suggesting fibro. It certainly does happen that someone develops fibro after a trauma like an accident or surgery, and the way you describe the pain sounds typical of fibro pain. He probably has a very valid point about lach of sleep and poor sleep quality too. It really can cause an escalation of all these symptoms and decrease your general well being. Many people with lupus also have fibro, so that you have one does not eliminate the possibility of having the other too.

I think his comment about ANA is wierd and inappropriate. What a thing to say. True - most people wth a positive ANA will not have lupus, but to simply reject it outright is stupid. However, he did order further tests for lupus, so he isn't really rejecting it outright - he is checking you out further.

At the moment, you can't draw any conclusions about what is going on with you on the autoimmune front. You may be developing something, or maybe not. For lupus to be diagnosed most doctors will want to see that you have enough symptoms that can't be another disease, plus positive blood work. Read through the ARC criteria and information on the home page of this website and see how many boxes you can tick.
Having family members with lupus does increase the chance that you will develop an autoimmne problem yourself, so you certainly need to be monitored.

It is a frustrating fact that most people have to wait a long time before they finally get a diagnosis for lupus. This is primarily due to it being a clinical diagnosis - ie based on the experienced judgment of a rheumatologist. There is no test that can completely rule out lupus, and except for a few tests (like a kidney biopsy showing lupus nephritis, or a skin biopsy being positive for lupus, or a high titre of anti DNA antibodies), positive test results or symptoms are not proof of lupus, but weighty clues. You can think of it a bit like a court case - you need to convince the jury and judge that the evidence is subsantial enough for a conviction!

The question you ask about whether your current rheumy is a keeper or if you need to look for another is a good one.

Did he do a physical examination of you? Did he do the tender point examination befor diagnosing fibro? Do you have a followup appointment soon? Did he offer means of contacting him should you develop other problems? Can you tollerate poor comunication, or is this reason enough for you to go elsewhere? Did he test your urine and check you BP?
If the answer to these questions is "no" then I would judge his assesment poorly and consider a second oppinion. If your followup appointment is soon, you might want to wait for it and see how it goes and search for a new rheumy after that is you feel it is waranted.

Hang in there,

X C X

 

[DnA]

Hi Bdm

Just to let you know that you are not alone! I have spinal problems, again due to an accident, and have had 2 ops, but the bone hasn't healed.

I saw a rheumie about a year ago but he refused to see me again until they had sorted my back out. He said I didn't have lupus, it was obviously my spine that was the problem. He didn't even look at my blood test results. My dermie diagnosed me, but left it to my GP to tell me.

I personally think the problem is that if you have an injury the specialists are often quite happy to pass you on to someone else. One orthopaedic surgeon took offence to me wearing dark glasses inside even when I explained that a photosensitivity expert told me it was essential when in any form of bright light. He then refused to treat me.

All I can advise is keep fighting - it's taken me about 20 years to get the correct lupus diagnosis. I now see a brilliant team who are in the process of setting up a complete care package to include access to all the specialists I need, including a rheumie who actually knows about lupus!

Good luck

Sammy

 

[bdm92]

rheumy visit

Thanks so much for the replys!
He did do the tender point exam but it was after he already told me it was fibro. He did not check my urine. I do have a follow up appt. ANd no I don't like the poor communication, I just like a doctor who has a personality.

I am going to call next week and see what the bloodtests showed, and if it showed something then I will go back to my folowup, but either way I am going to get a second opinion just incase.

Again thanks so much and I will post my results when I get them.

bdm92

 

[Maia]

I certainly wouldn't be impressed if I was you... & would probably be making an appointment for a second opinion already! You can ask in the Find a Doctor forum for any personal recommendations of our members for a physician that lives near you (or search through the forum for any past recommendations).

You've already received great advice, but one more bit of advice would be to request copies of your test results (from this rheumy as well as from whoever did the initial ANA test) instead of relying on verbal communication/interpretation from a nurse or office staffer.

One other reason I am not terribly impressed is that he did not give you the more accepted forms of treatment for fibromyalagia (such as amitriptyline or Lyrica). Best of luck for finding a better rheumy in the near future.

 

[bdm92]

rheumy visit

I had tried lyrica and neurontin in the past and the side effects for me were a little much I became confused and could not concentrate, But when he seen that I had listed these two drugs as ones that I had tried, he said that the drug companies are rediculous and all I would get out of those was weight gain.
No i did not like those drugs, but I wouldn't think that they are rediculous, since they have helped alot of people.

bdm92

 

[bdm92]

slow healing

Hi Bdm

Just to let you know that you are not alone! I have spinal problems, again due to an accident, and have had 2 ops, but the bone hasn't healed.

I saw a rheumie about a year ago but he refused to see me again until they had sorted my back out. He said I didn't have lupus, it was obviously my spine that was the problem. He didn't even look at my blood test results. My dermie diagnosed me, but left it to my GP to tell me.

I personally think the problem is that if you have an injury the specialists are often quite happy to pass you on to someone else. One orthopaedic surgeon took offence to me wearing dark glasses inside even when I explained that a photosensitivity expert told me it was essential when in any form of bright light. He then refused to treat me.

All I can advise is keep fighting - it's taken me about 20 years to get the correct lupus diagnosis. I now see a brilliant team who are in the process of setting up a complete care package to include access to all the specialists I need, including a rheumie who actually knows about lupus!

Good luck

Sammy

That is strange, you said your bones aren't healing, well the last X Ray of my neck shows my bones aren't fusing very fast at all, for someone my age and I don't smoke and I am not overweight, my neurosurgeon said it shouldn't be taking so long to fuse.
Just thought that was wierd that you are having the same problem.
bdm92