This is a long story and it's hard to know where to begin. I had an appointment yesterday with an MS Neurologist from hell. I am inserting my medication and problem list and my summary of the appointment, which I wrote for my Therapist. I don't know what you do with these e-mails, but you are free to use or send it, however you like. I sent the summary to several Internet friends and one who has SLE, sent me this page. Your site is beautiful and I look forward to exploring it some more.

Signs and Symptoms
July 26, 1999

MEDECATIONS:

Diltiazem CD 180 mg OD; Flonase 2 sprays each nostril BID; Effexor XR 75 mg, 4 tabs QAM; Aldactone 200 mg QAM; Amiloride 5 mg BID; Cardura 2 one tab OD; Colace two caps OD; Serzone 50 mg, two tabs @ HS; Ativan 1mg, one or two tabs, @HS PRN; Tylenol #3; Norgesic Forte PRN for headache; HCTZ 25mg PRN, for edema.

Facial Rash lasted for three months summer of '97. Came and went spontaneously. Saw my Neurologist at the time about migraines and he indicated it was typical of a "Lupus type rash". The ANA was negative and it was never discussed again.

Blurred vision; Used to be transient. First noticed summer 1991, during move from Germany to Canada. Had severe left eye pain for five days, then less intense right eye pain, for five weeks, January, February 1999. Piercing pain, seemed to come from behind eye. Worse with movement. Blurred vision seems to vary. Saw Opthamologist, February 10, 1990. No sign of problem other than dryness. April 26-27, 1999, left eye pain. Vision blurry and some dimming of colour. May 6, 1999, saw Dr. Pogue, Optometrist, for continuing symptoms of blurred vision, one or both eyes, less intense colour in left eye and occasional episodes of jumping vision, when things are held very close. Colour vision now fine. Saw Dr. Zackon, Neuro Opthamologist, May 12, 1999. Did not find anything wrong with my eyes.

Foot Pain; Bottom of both feet had bruised and burning feeling. Lasted about a year and a half, 1991-92. Was most painful on rising, in a.m. Would ease after a minute or two, of being on my feet, but still painful. Happens only occasionally, now.

Headache Pain; Migraines since a small child. Gradual increasing frequency. By 1996, headaches every day. Intensity varies throughout the day from mild to quite severe. Have tried many medications without success, including b-blockers, Elavil, Neurontin, Feverfew etc. Daily headaches continue.

Hip pain: Left side. X-rays negative. Gets worse with over activity. Also bad after two surgeries. LAP Hysterectomy in March of 1993 and LAP Cholesystectomy in January of 1997.

Hyperaldosteronism diagnosed during pre-op blood work. After two+ years, Potassium level fairly well controlled. Despite diuretics and anti-hypertensives, BP remains high (150/110)

Trigeminal Neuralgia: Right side. Fall of 1996 to summer of 1997. Excruciating pain from middle of nose to back of ear and from top of head to lower jaw. Triggered by eating, brushing teeth, wind, sudden movement. Awakened at night, by it. Some residual pain, at times since, but not severe.

Neurogenic Bladder: Mixed type. Diagnosed by Urologist, fall of 1997. Problems with starting stream (weak) and keeping it going. Urgency and frequency as well as overfilling. Take medication, but warned I will likely have to use intermittent catheterization, when it no longer works.

Severe Constipation: Very resistant to bulk laxatives, milk of magnesia and lactulose. Have gone as many as 13 days without BM. Usually 5-7 days. Interspersed with occasional episodes of painful cramping and diarrhea. Sometimes diarrhea will last for two or more weeks, usually just a day or two.
Rectal Spasms: Very painful. Sometimes triggered by incomplete BM, but usually happens spontaneously. Occasionally wakened at night, by it. Only way to relieve pain is to sit on toilet and strain or to use a wad of tissue to rapidly press and release area. First episode was in 1995.

Muscle Spasms: feet, hands, calves, hips, flank area and abdomen. Sustained tight cramp sensation. Usually brief, except for calf spasms. It feels more like over exercised, painful muscles, but isolated to one area. Has lasted up to three days.

Left Sided Weakness and limping: Especially left leg. Feels heavy and clumsy. Going down stairs is awkward. Stumble and limp, frequently. Have difficulty holding my arms over my head to do my hair. Left arm especially will burn and ache with weakness Frequently drop things or arm jerks and item goes flying. On June 28, 1999, experienced a brief episode of difficulty walking. Each time I took a step, my whole body trembled, like someone with Parkinson's! My legs felt like they were made of soft rubber or limp noodles it felt as though they might buckle and I would fall. Managed to make it to the air- conditioned car and episode resolved to usual level by the time I got out of the car, 15 minutes later. Has happened three times since, each time when I was very hot and tired.

Pins and Needles: Area on back of scalp and neck. Used to be mild, fizzy sensation. Now much stronger, almost painful and wraps around to chin. Stronger on left side. Like a hard shower spray. Occurs at times in arms, usually the left one, down to hands and into the last two or three fingers, or thumb and first finger. Rarely in legs.

Reduced Sensation To needle pokes: on left side. Sensation varies from that of a straitened paper clip to that of a pencil tip eraser.
Surface Numbness Of varying degrees: from chest down, on left side, especially left hand. Frequently drop things. April 28, 1999 --- developed sensation, in face like freezing coming out, after dental work. Kind of tight and tingly and at times, itchy. Started on left side of chin and progressed till whole left side of face and forehead, involved. Intensity varies from barely noticeable, to quite strong. Feels odd.

Severe Fatigue: Had to reduce work days, from full time, January 1996, to Monday, Wednesday and Friday, to rest from migraine and fatigue. Continued to worsen. Had to stop work completely, (R.N. Disability Adjudicator, with CPP) in January 1997.
Insomnia: Great difficulty going to sleep. Insomnia, confirmed with Sleep Lab Study, March 1999. Will sometimes "crash" and sleep for 12-18 hours, in a 24 hour period. Often go several days with just a few (3-5) hours of sleep a day.

Clinical Depression: Started around fall of 1995, along with constant migraine and severe fatigue. Continues despite medications and weekly Psychiatry appointments.

Tremors: Comes and goes, in both hands or just in one hand. Sometimes have sensation of whole body trembling, internally.
Loss of Position Sense: When waking up, sometimes can't tell what position legs or arms are in, without looking.

Cold Patches: Lower shoulder blades and upper buttocks, have a band of cold sensation. Feels like my clothes have been cut away and area is exposed to cold air.
Heat Intolerance: Have not been able to tolerate heat, for several years. Go from heat to air conditioning. Become extremely weak, in temperatures above 25 C.

Light Headed: Frequent episodes of feeling light-headed. Sometimes accompanied with nausea. Eases with lying down.

Swallowing Difficulty: Occasional episodes of swallowing difficulty. It's like I've forgotten how. It just won't go down. Sometimes wake up choking, during the night. It feels like I've swallowed the "wrong way". Keep coughing until I get up and cough forcefully, to clear chest.

OTHER

- T and A at two years of age. 1957
- Nephritis hospitalized for 10 days in 1961
- Goiter at 12 years of age. 1967. Took iodine for one year.
- Hashimotos Thyroiditis diagnosed after mother and two siblings put on thyroid supplement. So far TSH levels are normal.
- Diabetes diagnosed with 4 hour GTT in 1975 as part of investigation for chronic bladder infections. Maintained on strict diabetic diet x one year. Repeat GTT one year later, was normal. Doctor felt the problem was related to high dose birth control pill. No problem during two pregnancies. FBS have been normal. All 7 of my mothers siblings are insulin dependent. Two brothers are on Gliburide.
- Extra Systoles diagnosed with 24 hour Holter 1980
- Lap Hysterectomy 1993 for menorrhagia.
- Lap Cholecystectomy 1997

I have a nursing background, am 43 years old, married and the mother of 2 teens. I have been on disability for 2+ years....mostly granted on the issues of Depression and daily migraines. I have a specialty in Psychiatry and ironically my last job was with the government (Canadian) as a Disability Adjudicator!

I requested a second opinion from my regular Neurologist, Dr. Sitwell, after he told me that I definitely did NOT have MS. When I asked what could it be, he said, "Chronic Fatigue or Stress". He was quite pleasant about the request for a second opinion and sent a detailed consult. Dr. Freedman read the consult before talking to me and it became obvious that he completely supported his colleague and had already made up his mind about me, before he even looked my in the eye.

Dr. Freedman (one of only three MS Neurologists, in Ottawa and very widely respected) walked in, dropped my file on the desk, including "The List" and dismissively waving at it, said, "do you need all those meds?" I said yes explaining they were either for Depression or Hyperaldosteronism. He made a face and referring to the list, said, "Anyone who can show me a list like that and is sitting here and looking as healthy as you do, does NOT have a neurological problem. If you have MS, then I'm a monkey's uncle."

That is how we started and how we continued. I was in shock. He had looked at the consult from Dr. Sitwell, my Migraine Neurologist and already made up his mind. He told me that Dr. S, was a really good guy to have stayed with me as long as he had and run all the tests, despite no evidence of anything wrong. He told me that the brain is incredibly complex and capable of amazing things, like allowing a person to walk over hot coals, unscathed; or meditate to the point of being able to tolerate open surgery; OR....to go to some kind of rally, where everyone waves their arms in the air and someone gets cured!!!! He then said, "you are the type of person to go on one of those shows, like Jerry Falwell, or something and claim that you were instantly healed of something.....if a person believes something strongly enough, they can make it happen." He really hit a button with that one. He could see that I wear a cross on a chain and dangling, cross earrings. I was shocked out of silence into sarcastic comment. "Oh, I tried that last year and it didn't work." He laughed. It did manage to defuse my fury.

All this was BEFORE he examined me. He continued with a few questions about my depression and told me that medication was useless and I might as well throw them away. I had to stop looking for a physical cause for my symptoms and work with my Psychiatrist to discover what suppressed internal conflict, was causing me to DECOMPENSATE. I told him I had considered that, but there were just too many CONFIRMED problems to believe that it was ALL due to that. I know that all these things are worsened by Depression/Stress, but I'm not so sure about being CAUSED by it.

He asked me why I believed I might have MS. I pointed to the confirmed Trigeminal Neuralgia and the Neurogenic Bladder and he said the TN was probably just a variation of my migraine and as far as the NB, he asked if I'd actually had the proper testing. I told him that I had a Voiding Cystometrogram done and the Urologist was definite in his diagnosis, that I had tried a couple of different meds and that the one I am currently on, may lose it's effectiveness and I'll eventually have to do self-catheterization.

I couldn't remember the Urologist's name, which is very common with my cognitive problems. His comment to that, was, "well there are Urologists and there are Urologists." (!?) He did ask me why I WANTED to have MS and not waiting for an answer, said, "believe me, you don't want to have MS". Then he told me that there was no shame in Depression with decompensation and that it was just as legitimate as MS. Well I know there isn't shame for anybody ELSE, but there is for ME!!! :-)

My comments of the percentage of people with negative MRI, LP, etc., being 10-15% according to my research, after he told me that 95% have a positive LP and 99% have a positive MRI, was pooh-poohed. He asked me where I came up with those numbers and was even more derisive, when I told him, the medical sites, like "The New England Journal of Medicine and The National Institute of Neurological Study on the internet. He said it depended which study they were quoting from and which tests and equipment.....that he uses a very sensitive LP test and MRI equipment.

When I told him that I was very heat intolerant, he said, "don't you think everyone, is?" When I said, "not to the point of hardly being able to walk", he said he doesn't know anyone with MS who is affected by heat so much as to be CRIPPLED by it. I told him I knew of several, at the MS forum. He laughed and said, "you don't even know who those people are, or if they even have MS."

I was immobilized and ready to walk out, at the same time. He may have sensed that I was about ready to cry and was very nice but very definite and confident and told me about a patient of his that he followed for seven years. She had seizures and he was unable to pinpoint the problem. She was completely believable and had reliable witness accounts and he kept trying to find out what the problem was. He even sent her to Psychiatrists, who reported back that she was a lovely, mentally healthy lady. So he hospitalized her to try and capture a seizure. He did and was angry at himself for not realizing the seizures were completely hysterical. (what they used to call Decompensation) Of course they were very real to her and had every appearance of being genuine. He sent her to another Psych....nothing.

Then her father called him one night to tell him that she had a really bad spell and then wandered...something she frequently did. He found her and brought her home and still in her trance state, she proceeded to tell him that when she was 18 she was gang-raped by a group that included a relative. When she roused, she had no memory of telling him and told him he was making it up, lying, etc. She couldn't believe him. Back to Psych, only this time she had an Amital injection and everything came out. No more seizures. Ta da!

OK, I believe that really happened and I know that abuse (usually in childhood) can lead to suppressed memories (I don't remember any abuse and don't believe I ever was) and physical symptoms, later in life, but.......what about my confirmed diagnoses? He said he really questioned the validity of the diagnosis of things like Hyperaldosteronism and Neurogenic Bladder. He then told me that I would never get well until I was ready to accept that there was nothing physically wrong with me and to work on the psychological issues.

He did examine me and I KNOW there were things wrong. (difficulty with nose to finger and closed eyes to nose, left leg and arm strength, difficulty standing with eyes closed without wabbling and almost falling backwards and difficulty doing heel to toe and almost falling off the line) I guess those are not particularly objective and can be influenced by the patient, so it seemed to be dismissed, as irrelevant. He never commented on this and told me afterwards, that someday I would be well, that he was happy to have met me and have had the opportunity to lay to rest the idea of any further pursuit of organic illness and looked forward to the day when he would see me again, happy and healthy.

Phew, sorry to be so long-winded. After all this, I fluctuate between, "ok, what if he's right?" and "hey, wait a minute, I KNOW there is SOMETHING wrong, here!" Emotionally, I'm alternating between hopelessness and anger. I prefer the anger and will try to minimize the other till I have a chance to discuss it with my Psychiatrist.

Well, that's it! I would love to hear any comments or advise you might have. I guess I'm not willing to give up, just yet. I do have a strong faith and try to take one day at a time and enjoy each moment as it comes. I take pleasure in the little things and in spite of all this pain and confusion, I have joy in the Lord and give thanks to Him who gives me strength.

Thank you so much for your time. I appreciate any help you can give me. God bless you.

Here!