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Neurology (Expert Forum)
Autoimmune Disorders
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Autoimmune Disorders
by Penny Thomas, Aug 25, 2000 12:00AM
I am a 41 yr old female. I have always felt that I have been in good health. The only chronic condition that I have had throughout my life (initially diagnosed at 15 months of age) is iron deficiency anemia. At approx. 31 yrs of age, I began to experience dizziness & fatigue - also had an episode of numbness of mouth and throat. I attributed symptoms to getting older. At approx. 35 years of age began experiencing headaches. I also began having irregular periods (2X per month) and was placed on depo provera injections.
Finally went to neurologist at approx age of 38...because of headaches, dizziness, fatigue,etc. After several visits..a CAT scan and MRI, neurologist diagnosed me with MS. Several months later I developed numbness in lower left leg and weakness in left arm / hand. Numbness in mouth returned. Neurologist prescribed Copaxone. After several months, I was also diagnosed with Hypothyroidism (Synthroid was prescribed)
At approx. the same time, I began to have pain in right knee / hip. Went to Orthopedic...was told that I would eventually need a hip replacement due to cart. degeneration. I was prescribe Vioxx.
During December of '99, I developed several eruptions on my face. I visited a Dermatologist and was diagnosed with Roscea. I was prescribed Monoxid.
Finally, approximately 6 months ago, I began to have episodes of of sleepiness during the day. This became worse...also had symptoms of "feeling as if I was in a dream-like state". Neurologist suspected Narcolepsy. A genetic test confirmed that I was positive for the 2 genes commonly associated with Narcolepsy. A sleep study was completed (MSLT). The neurologist stated that I was 100% positive for abnomal REM sleep on each segment of the test. I was prescribed Provigil....took it for 6 weeks. It was not adequate...began taking Ritalin. I also began experiencing episodes of leg / ankle edema....I was prescribed Lasix to control this.
At this point in time, I am becoming quite impatient concerning what appears to be the continuous development of chronic conditions. I believe that many of these conditions may be autoimmune. I have been advised to visit the Cleveland Clinic...I was told that I should see a neurologist. I live in KY and the visit would entail a good bit of travel. Does this course of action seem feasible?
Finally went to neurologist at approx age of 38...because of headaches, dizziness, fatigue,etc. After several visits..a CAT scan and MRI, neurologist diagnosed me with MS. Several months later I developed numbness in lower left leg and weakness in left arm / hand. Numbness in mouth returned. Neurologist prescribed Copaxone. After several months, I was also diagnosed with Hypothyroidism (Synthroid was prescribed)
At approx. the same time, I began to have pain in right knee / hip. Went to Orthopedic...was told that I would eventually need a hip replacement due to cart. degeneration. I was prescribe Vioxx.
During December of '99, I developed several eruptions on my face. I visited a Dermatologist and was diagnosed with Roscea. I was prescribed Monoxid.
Finally, approximately 6 months ago, I began to have episodes of of sleepiness during the day. This became worse...also had symptoms of "feeling as if I was in a dream-like state". Neurologist suspected Narcolepsy. A genetic test confirmed that I was positive for the 2 genes commonly associated with Narcolepsy. A sleep study was completed (MSLT). The neurologist stated that I was 100% positive for abnomal REM sleep on each segment of the test. I was prescribed Provigil....took it for 6 weeks. It was not adequate...began taking Ritalin. I also began experiencing episodes of leg / ankle edema....I was prescribed Lasix to control this.
At this point in time, I am becoming quite impatient concerning what appears to be the continuous development of chronic conditions. I believe that many of these conditions may be autoimmune. I have been advised to visit the Cleveland Clinic...I was told that I should see a neurologist. I live in KY and the visit would entail a good bit of travel. Does this course of action seem feasible?
Doctor's Answer
by CCF Neuro[P] MD, RPS, Aug 25, 2000 12:00AM
Dear Ms. Thomas:
It is difficult to tell you what to do. You have multiple symptoms that might have a broad range of etiologies. I am assuming that a neurologist diagnosed you with MS: based on the MRI, spinal fluid analysis and clinical findings? There is always the possibility that you have two disorders, but some of the symptoms are not usually seen in MS patients, such as degenerative joint disease, but we have seen a few such patients. Rosea is common as is thyroid disease. I am not aware of a genetic test for narcolepsy except in the dog model of narcolepsy. Unless the MS was completely proven, I think I would seek out another opinion. System autoimmune disease/endocrine disorders might be in the picture but further workup would have to be done. Coming to the Cleveland Clinic would be fine and I would recommend Dr. Patrick Sweeney. But there should be good neurologists at the University of Kentucky or Louisville.
I hope you find some answers to the etiology of your symptoms.
Sincerely,
CCF Neuro MD
It is difficult to tell you what to do. You have multiple symptoms that might have a broad range of etiologies. I am assuming that a neurologist diagnosed you with MS: based on the MRI, spinal fluid analysis and clinical findings? There is always the possibility that you have two disorders, but some of the symptoms are not usually seen in MS patients, such as degenerative joint disease, but we have seen a few such patients. Rosea is common as is thyroid disease. I am not aware of a genetic test for narcolepsy except in the dog model of narcolepsy. Unless the MS was completely proven, I think I would seek out another opinion. System autoimmune disease/endocrine disorders might be in the picture but further workup would have to be done. Coming to the Cleveland Clinic would be fine and I would recommend Dr. Patrick Sweeney. But there should be good neurologists at the University of Kentucky or Louisville.
I hope you find some answers to the etiology of your symptoms.
Sincerely,
CCF Neuro MD
Your post sounds like I wrote it.
Like you, I have been plaqued with many symtoms over the years. I prayed with each new one "this too shall pass" and usually they do, only to be plaqued with another thing.
If it isn't my legs or my hips or a rash or severe fatique, or one sided headache and palpitations, patches of shiny skin or blotches on my legs, it is one thing and another. My fett and ankles swell and so do the bottom of my legs. I feel this when walking as the skin feels very tight.
The worse things started last year. I had blurry vision and great light sensitivity and very dry eyes that scraped the cornea and caused excess skin tags in the inner upper lids (left side was worse) from all the inflammation. I had to have this lasered out. It is coming back again. Then the thyroid went nutty and my TSH went to 20. Normal range is about 0.05-5.0. The antibodies showed Hashimoto's Thyroiditis. In the past my TSH was always 1.0. My mouth is now dry and the ENT man does not have a clue. I also now have trouble swallowing. Things seem now to be escalating for me.
I finally got on the internet to research and *think* (me saying this) that I possibly have a Connective Tissue disorder. I had seen over 20 doctors over the years with these weird symptoms and no one confered with the other one. My heart may also be involved now and I see the cardiologist on Tuesday. I begged my GP to refer me to a Rheumatologist (they specialize in this)
and after talking to the rheumatologist on the phone, (he screens his patients first) he asked me to come in and see him.
Penny, you may want to consider seeing a Rheummy doctor also. I am sure that C.Clinic have top notch ones or in Kentucky. No one ever mentioned MS to me but who knows. I feel I have two components to this madness that over twine one another.
I am not a doctor...just a concerned patient who is now taking the bull by the hand and not letting go.
Good Luck to You.
It is good that you are seeing a rheumatologist. I can't believe that they have not sent you to one before. Dry eyes, mouth, swallowing difficulties are classic signs of sjogren's syndrome an autoimmune connective tissue disorder. Although there are other possibilities it should be checked. The rheumy should be able to sort things out. I believe it is very treatable.
You might look up sjogren's before your appointment so if he suspects it you will know what to ask about.
Best wishes.
I hope by now you have seen the Rheu and have gotten some help. Most women with Sjogren's go for years from doctor to doctor before getting a correct diagnosis so you're not alone. Checkout sjogrens.org