Quix Help!!!! Mad at neuro

[Tahiri_Veila]

I just got a call from my neuro's office.  He got the lab results for the ANA, ACE, ESR, Lyme Titer, and TSH.  Quote "All results were negative, so there is no way you have MS because if you did I would see some positives." Well pretty close to word perfect.  He also said that the tests show that I do not have anything, nothing is wrong everything is normal.  So I have nothing these symptoms are nothing.  I am so mad I do not know what to do.  Tell me if I am wrong, but there is no blood test for MS.  A clean brain MRI does not rule out MS. I am soo mad because I just got told that it is either MS or fibromyalgia by my GP and the reason he came to that conclusion is because all the tests were negative.  So I have 2 doctors that contradict each other.  One I trust and the other doesn't even give me the time of day, if you know what I mean.  I hate it and I don't know what to do at this point because it hurts and I don't even get much of a break between each time it flares anymore.

Help please. And sorry for the emotional rollercoaster I am going through and taking you all with me.

Tahiri

[Sunnytoday]

hang in there, don't give up!!!

I'm sure other's will be chiming in soon and telling you the medical details, I just wanted to let you know that it's ok to vent, and be upset when things get a little crazy like that!!

We are here for you!
Many, many (((((hugs))))))
~Sunnytoday~

[jensequitur]

Tahiri, you know what these tests are for, right?  I went and looked them up, just so I would know.

TSH Test - Thyroid-stimulating test
Checks to make sure your thyroid is working

ANA Test - used to show positives in these diseases:

Systemic lupus erythematosus (lupus or SLE) - over 95%
Progressive systemic sclerosis (scleroderma) - 60-90%
Rheumatoid Arthritis - 25-30%
Sjogren's syndrome - 40-70%
Felty's syndrome - 100%
Juvenile arthritis - 15-30%

ACE: Helps diagnose and monitor sarcoidosis

ESR test: for symptoms that suggest polymyalgia rheumatica or temporal arteritis

What this all sounds like to me is that the doctor has eliminated every possibility but MS or fibromyalgia.  He has it exactly backwards.  If any positives were seen, then there would be a possibility it was one of the above diseases, but it was all negative.  

A clean brain MRI does not rule out MS, but have you had a spinal tap?  Or an evoked potential, or SSEP (Somatosensory Evoked Potential)?  I think this neurologist isn't doing his job very well!  Ask your GP if you can be assigned to another neurologist, perhaps an MS specialist, who will know more about an MS diagnosis.

Also, see if you can talk somebody into giving you a spinal MRI.  Your leg and back spasms can be caused by spinal stenosis, or a spinal lesion.

[slightlybroken]

Jensequitur hit this one right on the nose. I would change to a doctor who knows what he is talking about because this guy sure doesn't.

[Heather3418]

You are CORRECT.  There is NO blood test for MS.  If it were that easy, there wouldn't be so many still in Limbo.

I am so sorry to hear about this doctor.  Time to seek another doctor. I know, not what you wanted to hear.  But really, it is time...

Best Wishes,
Heather

[Fluffysmom]

You're right to be upset, Jensequitur is right; this neuro has it bass ackwards!

Stomp and yell and vent off some of the anger, and then call your GP for a referral for a second opinion, with someone who understands MS and it's mimics and neurology in general.

Sorry if I sound like I caught your anger and frustration; seems like old times.  I've been through two neuros with similar dismissive attitudes, and have been waiting for a long time to get accepted by a MS specialist.

I understand the emotional rollercoaster, and know that you just need to hang on.  A lot of us have been on the same ride, and we are all here to make sure you don't fall off or get jerked around too much.

I thought my GP (PCP) agreed with neuro #2, so I arranged an appointment with my best friend along as an advocate, and cleared the air.  I found out that my GP was upset by how the neuro had dismissed me, said maybe she was burnt out, and that she believed in me and was behind me all the way.  She doesn't believe I have MS, thinks I have something called "white matter disease" (ignore that, Quix!), but is behind me going to the MS specialist and trying to get to the answers that I so desparately need.

I hope that you are able to get in soon to see a neuro that understands MS, get new spinal films on a 3 Tesla machine, and all of the rest of the care you deserve.

Take a deep breath and know that we care and that you aren't alone in this.

Kathy

[Tahiri_Veila]

Yes I know what they are all for.  And that is why I asked for each one of them.  I have had to push through him for the tests I want.  No I have not had a spinal, but I do not trust my neuro to do it because he says he does it in his office and then you just leave.  No lying down for a while and you don't need to stay lying down the rest of the day you can just go about like normal.  And I believe that to be a bunch of BS.  

I looked up the mimics and the tests needed so I asked him to do them and he added a couple.  I was also negative for B12.  Anyway, I know that my GP will do the tests needed and send me to the correct specialist.  This is the first time I actually went to my GP so this is the first he has heard of any of it.  He also would ask and answer questions and read my timeline and lab results and everything.  I am so glad he did.  He is so nice.

No I am just very mad at this dumb neuro.  Isn't there a weenie roast?  I nominate my current neuro.

Tahiri

[jensequitur]

I think you have a right to be mad at your neurologist, but I'm not sure how much good it will do ya!  Time to look for another one... or...  maybe ask your GP if you can get a spinal tap?

My neurologist did my spinal, but there was plenty of preparation.  He even prescribed a low dose of tranquilizer, so I would be nice and relaxed.  I do have to say that it was one of the more painful things I've ever done.  They injected the anesthetic which really burned, then they took the sample of spinal fluid.  They nicked a nerve, so this burning pain shot down my left leg - I almost jumped off the table!  They recommended that I go right home and go to sleep, so I did - slept for four hours.  Sometimes you can get a spinal headache from the tap if you stand up right away.

[Quixotic1]

Yep, the doc was either trying to get you to stay out of his office (slimy b*stard) or doesn't know his A$$ from the hole in his head.  All the blood tests are looking for MS mimics. None of them should be positive in MS.

Bottom line - You need a new neuro.

If you try to get the GP to order the MRI to rule out MS, then he has to order it "using MS Protocol."  Also, he would have to know all of the extra things that are ordered if an LP is done to rule out MS.  Some places call it an MS Panel or a Tourtelotte Panel.

Quix

[Tahiri_Veila]

Thanks.  I just had a brain MRI MS protocol so I do not think I will get another one for a while as they are expensive.  I will mention the MS Panel though if I do end up getting a LP.  For now my symptoms are starting to go and new ones coming so I am going to wait until the next flare.  

Does Fibromyalgia come and go?  Does it get worse and cause all of my symptoms?  Or is it more likely that if I have fibro I have something else as well?  Just asking.

I know I need a new neuro.  I guess you were right about him (this is the 10 years to make a diagnosis neuro).  I should have not gone back, but at least I was able to make him order the tests.  I will be going to a new neuro anyway, because my GP is very picky about who he sends you too because he treats everyone as if they were his own family.  I really like him and have been really impressed with his treatment of my husband and daughter, I just don't go to doctors unless I have to so I haven't told him before now.  I should have.  He is going to do more research as well to see if there are any more mimics that I did not think of.  He respects the fact that I have done research on my symptoms.  He listens and doesn't talk down.  He really is a keeper.  My husband has recieved such great help from him for like 10 years so he is not just a at first gung ho.

Tahiri

[Quixotic1]

Oh, yeah, the "10 years" guy.  I agree your GP sounds like a gem and a half!

The typical list of MS mimics blood work


Chem panel -
CBC - looking mainly for anemia
Thyroid - TSH
B12 - B12 deficiency
Autoimmune - ANA, ESR
Syphillis - VDRL
Lyme - Western Blot
HIV - titers
HTLV I & II - antibodies
Anti-Phospholipin Syndrome - Antiphopholipin and Anti-cardiolipin antibodies
ACE - Angiotensin Converting Enzyme
Copper and ceruloplasm - Wilsons Disease

This is the full list that I am aware of, but other tests may be added in the presence of suggestive things from the history and physical.

I hope others who are better versed in the behavior of Fibro will jump in here.  I know it waxes and wanes.  Rena recently posted a blurb from a great site on it.  I'll see if I can find it.

Quix

[Quixotic1]

This is from Rena two days ago.  Read it carefully.

"I agree that ruling out MS in the event of another "flair" is a good idea but there are tests that a Rheumatologist can do to discern whether or not Fibromyalgia is the problem and they also test for various other problems.  The following is the tender spot areas that the Rheumatologist would focus on:

Fibromyalgia Tender Points
Upon physical examination, the fibromyalgia patient will be sensitive to pressure in certain areas of the body called tender points. To meet the diagnostic criteria, patients must have:


Widespread pain in all four quadrants of their body for a minimum of three months. Pain is considered widespread when all of the following are present:


Pain in the left side of the body
Pain in the right side of the body
Pain above the waist
Pain below the waist
Pain in the neck, front of your chest, mid-back, or low back


At least 11 of the 18 specified tender points of fibromyalgia. These are areas of pain on touch but without signs of redness, swelling or heat in the surrounding joints or muscles. For a tender point to be considered "positive" you must feel pain when someone pushes with their finger with an approximate force of 4kg (roughly the amount of pressure needed to change the colour of the skin). Some health care providers may use an instrument called an algometer during the examination of the patient to ensure that only a 4kg load is being placed. The location of the 18 tender points are:



(1 & 2) Occiput: on both sides (bilateral), at the sub-occipital muscle insertions.
(3 & 4) Low Cervical: bilateral, at the anterior aspects of the inter-transverse spaces.
(5 & 6) Lateral Epicondyle: bilateral, 2 cm distal to the epicondyles
(7 & 8) Knee: bilateral, at the medial fat pad proximal to the joint line.
(9 & 10) Second Rib: bilateral, at the second costochondral junction, just lateral to the junctions on upper surfaces.
(11 & 12) Trapezius: bilateral, at the midpoint of the upper border of the muscle.
(13 & 14) Supraspinatus: bilateral, at origins, above the spine of the scapula (shoulder blade) near the medial border
(15 & 16) Gluteal: bilateral, in upper outer quadrants of buttocks in anterior fold of muscle.
(17 & 18) Greater Trochanter: bilateral, posterior to the trochanteric prominence.

Why Eleven Points?
Some experts believe that a person does not need to have the required 11 tender points to be diagnosed and treated for fibromyalgia. This criterion was originally intended for research purposes. A diagnosis of fibromyalgia may still be made if a person has less than the 11 of the required tender points so long as they have widespread pain and many of the common symptoms and associated syndromes connected to fibromyalgia, such as sleep disorders and irritable bowel syndrome.

If a patient has some symptoms but does not meet the tender point criterion, a diagnosis of "possible fibromyalgia syndrome" may be assigned. You should also remember that self-diagnosis is not advised and that you should consult a skilled medical professional to conduct a thorough examination.

What Goes with Fibromyalgia?
Commonly associated symptoms of fibromyalgia include:


Fatigue
Irritable bowel syndrome
Sleep disorders
Chronic headaches
Jaw pain
Cognitive or memory impairment
Muscle pain or morning stiffness
Painful menstruation
Numbness and tingling in the extremities
Dizziness or light headedness
Skin and chemical sensitivities

Fibromyalgia Doctors
If your doctor is not familiar with fibromyalgia, the best thing to do is look for a local fibromyalgia support group meeting and ask for recommendations. This way, you’ll not only get a personal recommendation from someone who has a first-hand understanding of your issues, but it will enable you to meet others who share your concerns.

Limitations of the Diagnostic Criteria
Since fibromyalgia sufferers have typically normal laboratory or x-ray tests the above listed criteria are important for diagnosing and studying the syndrome. However, the criteria are not without their drawbacks.

First, the tender point paradigm assumes that fibromyalgia sufferers only experience pain in the 18 anatomical sites of the body. Recent research has made it evident that individuals with fibromyalgia are sensitive to painful stimuli throughout the body, not merely at the identified locations.

Second, many patients with fibromyalgia will often find that on a given day they will have less than the diagnostic 11 tender points in their body. Does this mean that some days you have fibromyalgia others you don’t? Obviously this is not the case.

Patient tenderness varies from day to day and, as a result, tender point counts on some days can be below the required 11 while on other days it may surpass it. Furthermore, some patients will not always have pain in all four quadrants of the body. Some experience pain only on one side or on the upper or lower half of the body. That being said, in the absence of a foolproof laboratory marker for fibromyalgia, the criteria explained above remains the best diagnostic tool for this condition.

I only had 6 of the tender spots myself so they were able to rule out Fibromyalgia but I was also told that the pain I am experiencing in my hands is due to Osteoporosis and that I was low in Vitamin D which can also cause problems in MS patients and that most MS patients are low in Vitamin D.

I wish you luck with your testing and it will be interesting to hear what your PCP decides to do but bringing up the Rheumatologist again is a very good idea."

Rena

[Tahiri_Veila]

Thanks.  Yes I got that from Rena, I thank her too.  I will remember to tell my GP next flare.  I just read somewhere that Fibromyalgia usually comes with something. eg MS, Lupus, etc.  I am just wondering if there is any truth to that.   I also don't have any of the following;
Irritable bowel syndrome
Sleep disorders
Chronic headaches
Jaw pain
Painful menstruation
Skin and chemical sensitivities
Or at least not yet.  Does that mean that it is not likely?  Just wondering because it seems like I have less than half of them.
Tahiri

[jensequitur]

Auto-immune diseases seem to show up with their friends.  Somebody with MS might also have Crohns, or Hashimoto's, or lupus.  There doesn't seem to be a consistent disease link between fibro and MS, any more than there is between lupus and MS.  But when the auto-immune system is having problems, it does tend to open the door.

I have MS and vitiligo, which is the immune system attacking the melanin in my skin.  Weird, huh?

[jmp77]

I have had two spinal taps in my life. First one was in the hospital ER to rule out a brain bleed when I presented with visual disturbance and they could see nothing on the CT scan either way. I must say, IT WAS PAINFUL. The ER Dr hit a nerve that set pain down my leg like an electrical shock that then went back up and came out my mouth in a LOUD screech.

The second was recently, for MS. This one was also done at a hospital, but in radiology.....yes, it still hurt....but it was done with dye so the tech could see my spinal cord I suppose. I dont think a tap should ever be done 'blind' as my first one was in the ER.