Aa
I need help!
Pardon the lengthy description of my problem, but I'm trying to give as much info I can. I've been dealing with this since July of this year and still no diagnosis.
I'm a 51 yr old woman. I'm on Premarin (1.25) for a hysterectomy and Synthroid (.5mcg) for underactive thyroid. I had polio at age 12 (after all the shots)
This past July I awoke with a pain in my neck. It sent shooting pains when I coughed, yawned or laughed. Also hurt if moved certain ways. There was also the same sort of pain in my lower back. This lasted about 2 weeks then went away. Aspirin and heat helped, so I thought maybe arthritis? (my age...grin). About 2 weeks later, I found a lump in over my collarbone (left side) at the base of my neck. I went to 2 doctors and one surgeon who all said it was an infected lymph node and not to worry. It eventually did go away on it's own (after 2 months)...but nothing has been the same since.
Since then, here is a list of my symptoms: (these are ongoing)
-Itchy, crawly sensations which start behind my eyes, spreads down into my ear canals and into the right side of my neck. It's very distracting and when it occurs I feel weak, anxious,and have to lie down. This happens at least 5 days out of each week. These episodes last anywhere from an hour to all day!
-pounding feeling (feels like the back of my head or chest)
-at night mouth so dry I can't swallow, daytime sometimes too much saliva (like I'm always swallowing)
-eyes feel like they are weaker (opthamologist said no change)
-have photophobia
-feeling disoriented at times
-Vibrating feeling inside body. Not noticeable on the outside
-limbs getting smaller??? (my 10 yr old watch suddenly too big)
-insomnia (I take Tylenol PM in order sleep)
-pressure on arms or legs(like placing one leg over the other) leaves indentations which last longer than they used to
At various times since July I've had these symptoms:
-weak feeling on right side of body (arm, leg, face)
-burning feeling in right side of face
-twitching in various parts of body (eyes, throat, face, back)
-tingling in arms and hands (I've had carpal tunnel for years)
-tire easily
I have had an MRI of the neck and brain. Neck has some arthritis and brain states "cerebral tonsils a little lower than average, but not signficantly so."
My EEG was normal.
Blood work essentially normal except for My throid TSH - normal (but the T3 is marginally low). Basophils - marginally high. My doctor did not seem concerned about these.
I've had blood test for Lyme, Lead and other heavy metals, Cholinestasrase - all normal. Urine test - normal.
I have seen 2 neurologists, one post-polio doctor (who says it isn't PPS), 4 separate doctors. No one has a definte diagnosis.
I am worn out from dealing with this. I see my doctor again on December 21 and wonder if you have ideas and/or questions I might ask him. I appreciate your time and patience in reading this lenghty description. I've been following posts here and am truly impressed with the kindness the doctors show to those who are suffering. God Bless you!
Toni
I'm a 51 yr old woman. I'm on Premarin (1.25) for a hysterectomy and Synthroid (.5mcg) for underactive thyroid. I had polio at age 12 (after all the shots)
This past July I awoke with a pain in my neck. It sent shooting pains when I coughed, yawned or laughed. Also hurt if moved certain ways. There was also the same sort of pain in my lower back. This lasted about 2 weeks then went away. Aspirin and heat helped, so I thought maybe arthritis? (my age...grin). About 2 weeks later, I found a lump in over my collarbone (left side) at the base of my neck. I went to 2 doctors and one surgeon who all said it was an infected lymph node and not to worry. It eventually did go away on it's own (after 2 months)...but nothing has been the same since.
Since then, here is a list of my symptoms: (these are ongoing)
-Itchy, crawly sensations which start behind my eyes, spreads down into my ear canals and into the right side of my neck. It's very distracting and when it occurs I feel weak, anxious,and have to lie down. This happens at least 5 days out of each week. These episodes last anywhere from an hour to all day!
-pounding feeling (feels like the back of my head or chest)
-at night mouth so dry I can't swallow, daytime sometimes too much saliva (like I'm always swallowing)
-eyes feel like they are weaker (opthamologist said no change)
-have photophobia
-feeling disoriented at times
-Vibrating feeling inside body. Not noticeable on the outside
-limbs getting smaller??? (my 10 yr old watch suddenly too big)
-insomnia (I take Tylenol PM in order sleep)
-pressure on arms or legs(like placing one leg over the other) leaves indentations which last longer than they used to
At various times since July I've had these symptoms:
-weak feeling on right side of body (arm, leg, face)
-burning feeling in right side of face
-twitching in various parts of body (eyes, throat, face, back)
-tingling in arms and hands (I've had carpal tunnel for years)
-tire easily
I have had an MRI of the neck and brain. Neck has some arthritis and brain states "cerebral tonsils a little lower than average, but not signficantly so."
My EEG was normal.
Blood work essentially normal except for My throid TSH - normal (but the T3 is marginally low). Basophils - marginally high. My doctor did not seem concerned about these.
I've had blood test for Lyme, Lead and other heavy metals, Cholinestasrase - all normal. Urine test - normal.
I have seen 2 neurologists, one post-polio doctor (who says it isn't PPS), 4 separate doctors. No one has a definte diagnosis.
I am worn out from dealing with this. I see my doctor again on December 21 and wonder if you have ideas and/or questions I might ask him. I appreciate your time and patience in reading this lenghty description. I've been following posts here and am truly impressed with the kindness the doctors show to those who are suffering. God Bless you!
Toni
Reply to Toni's first post.
Toni, I'm not a physician. I'm a scleroderma patient. I can't tell much difference between my early self-description and your present complaints.
Has your doctor blood tested for ANA (antinuclear antibodies)? A positive result *may* indicate auto-immune disease. In my humble and un-enlightened opinion, you seem to complain of symptoms consistent with some sort of mixed connective tissue disease, or perhaps undifferentiated connective tissue disease (which may inevitably evolve to predominantly feature one of its composite illnesses, namely; lupus, myositis and scleroderma).
Don't mean to put a scare in you... An MCTD diagnosis is not always bad news since treatment has evolved greatly in the past decade and most people live long, productive lives with treatment. I'm submitting my opinion based on the following complaints you mentioned:
-thyroid problems (hyperthyroid in your case)
-arthralgias (arthritis-type pain)
-neuralgia (your face pain)
-neuropathy (your carpel tunnel is an example of compressive neuropathy)
-photosensitivity (as in lupus)
-fasciculations (little spasms)
-paresthasias (tingling, other strange sensations)
-dryness (esp. mouth and vagina = Sjrogens Syndrome)
-RLS (Restless Leg Syndrom - also a form of neuropathy)
-"indentations" (this could be the result of excess callogen in the skin - a strong feature, and mechanism of destruction in scleroderma)
If you test positive for ANA, your doctor will test for other auto-antibodies to specifically diagnose a disease, or rule out other auto-immune diseases non-specifically.
I'm sure you've talked to alot of competent physicians, but the fact remains that very few medical professionals have even heard of scleroderma (it is a rare disease). Scleroderma affects women four times more than men. I didn't read any complaints about cold sensitivity or colour-changes in the hands or feet. This feature, called Raynaud's Disease is often the presenting symptom, and when complimented with gastrointestinal problems, swiftly leads to speculation of scleroderma.
Scleroderma is a disease of exceptions, so I don't expect any case to follow any rules one might impose upon it. Even if your ANA is normal, it does not rule out a diagnosis of auto-immune disease if clinical features are present.
Good luck to you.
I don't think I'll be back to this site, I just happened along here by accident... If you need some online resources, you might start at www.sclerodermasupport.com
Toni, I'm not a physician. I'm a scleroderma patient. I can't tell much difference between my early self-description and your present complaints.
Has your doctor blood tested for ANA (antinuclear antibodies)? A positive result *may* indicate auto-immune disease. In my humble and un-enlightened opinion, you seem to complain of symptoms consistent with some sort of mixed connective tissue disease, or perhaps undifferentiated connective tissue disease (which may inevitably evolve to predominantly feature one of its composite illnesses, namely; lupus, myositis and scleroderma).
Don't mean to put a scare in you... An MCTD diagnosis is not always bad news since treatment has evolved greatly in the past decade and most people live long, productive lives with treatment. I'm submitting my opinion based on the following complaints you mentioned:
-thyroid problems (hyperthyroid in your case)
-arthralgias (arthritis-type pain)
-neuralgia (your face pain)
-neuropathy (your carpel tunnel is an example of compressive neuropathy)
-photosensitivity (as in lupus)
-fasciculations (little spasms)
-paresthasias (tingling, other strange sensations)
-dryness (esp. mouth and vagina = Sjrogens Syndrome)
-RLS (Restless Leg Syndrom - also a form of neuropathy)
-"indentations" (this could be the result of excess callogen in the skin - a strong feature, and mechanism of destruction in scleroderma)
If you test positive for ANA, your doctor will test for other auto-antibodies to specifically diagnose a disease, or rule out other auto-immune diseases non-specifically.
I'm sure you've talked to alot of competent physicians, but the fact remains that very few medical professionals have even heard of scleroderma (it is a rare disease). Scleroderma affects women four times more than men. I didn't read any complaints about cold sensitivity or colour-changes in the hands or feet. This feature, called Raynaud's Disease is often the presenting symptom, and when complimented with gastrointestinal problems, swiftly leads to speculation of scleroderma.
Scleroderma is a disease of exceptions, so I don't expect any case to follow any rules one might impose upon it. Even if your ANA is normal, it does not rule out a diagnosis of auto-immune disease if clinical features are present.
Good luck to you.
I don't think I'll be back to this site, I just happened along here by accident... If you need some online resources, you might start at www.sclerodermasupport.com
Reply to Toni's first post.
Toni, I'm not a physician. I'm a scleroderma patient. I can't tell much difference between my early self-description and your present complaints.
Has your doctor blood tested for ANA (antinuclear antibodies)? A positive result *may* indicate auto-immune disease. In my humble and un-enlightened opinion, you seem to complain of symptoms consistent with some sort of mixed connective tissue disease, or perhaps undifferentiated connective tissue disease (which may inevitably evolve to predominantly feature one of its composite illnesses, namely; lupus, myositis and scleroderma).
Don't mean to put a scare in you... An MCTD diagnosis is not always bad news since treatment has evolved greatly in the past decade and most people live long, productive lives with treatment. I'm submitting my opinion based on the following complaints you mentioned:
-thyroid problems (hyperthyroid in your case)
-arthralgias (arthritis-type pain)
-neuralgia (your face pain)
-neuropathy (your carpel tunnel is an example of compressive neuropathy)
-photosensitivity (as in lupus)
-fasciculations (little spasms)
-paresthasias (tingling, other strange sensations)
-dryness (esp. mouth and vagina = Sjrogens Syndrome)
-RLS (Restless Leg Syndrom - also a form of neuropathy)
-"indentations" (this could be the result of excess callogen in the skin - a strong feature, and mechanism of destruction in scleroderma)
If you test positive for ANA, your doctor will test for other auto-antibodies to specifically diagnose a disease, or rule out other auto-immune diseases non-specifically.
I'm sure you've talked to alot of competent physicians, but the fact remains that very few medical professionals have even heard of scleroderma (it is a rare disease). Scleroderma affects women four times more than men. I didn't read any complaints about cold sensitivity or colour-changes in the hands or feet. This feature, called Raynaud's Disease is often the presenting symptom, and when complimented with gastrointestinal problems, swiftly leads to speculation of scleroderma.
Scleroderma is a disease of exceptions, so I don't expect any case to follow any rules one might impose upon it. Even if your ANA is normal, it does not rule out a diagnosis of auto-immune disease if clinical features are present.
Good luck to you.
I don't think I'll be back to this site, I just happened along here by accident... If you need some online resources, you might start at www.sclerodermasupport.com
Toni, I'm not a physician. I'm a scleroderma patient. I can't tell much difference between my early self-description and your present complaints.
Has your doctor blood tested for ANA (antinuclear antibodies)? A positive result *may* indicate auto-immune disease. In my humble and un-enlightened opinion, you seem to complain of symptoms consistent with some sort of mixed connective tissue disease, or perhaps undifferentiated connective tissue disease (which may inevitably evolve to predominantly feature one of its composite illnesses, namely; lupus, myositis and scleroderma).
Don't mean to put a scare in you... An MCTD diagnosis is not always bad news since treatment has evolved greatly in the past decade and most people live long, productive lives with treatment. I'm submitting my opinion based on the following complaints you mentioned:
-thyroid problems (hyperthyroid in your case)
-arthralgias (arthritis-type pain)
-neuralgia (your face pain)
-neuropathy (your carpel tunnel is an example of compressive neuropathy)
-photosensitivity (as in lupus)
-fasciculations (little spasms)
-paresthasias (tingling, other strange sensations)
-dryness (esp. mouth and vagina = Sjrogens Syndrome)
-RLS (Restless Leg Syndrom - also a form of neuropathy)
-"indentations" (this could be the result of excess callogen in the skin - a strong feature, and mechanism of destruction in scleroderma)
If you test positive for ANA, your doctor will test for other auto-antibodies to specifically diagnose a disease, or rule out other auto-immune diseases non-specifically.
I'm sure you've talked to alot of competent physicians, but the fact remains that very few medical professionals have even heard of scleroderma (it is a rare disease). Scleroderma affects women four times more than men. I didn't read any complaints about cold sensitivity or colour-changes in the hands or feet. This feature, called Raynaud's Disease is often the presenting symptom, and when complimented with gastrointestinal problems, swiftly leads to speculation of scleroderma.
Scleroderma is a disease of exceptions, so I don't expect any case to follow any rules one might impose upon it. Even if your ANA is normal, it does not rule out a diagnosis of auto-immune disease if clinical features are present.
Good luck to you.
I don't think I'll be back to this site, I just happened along here by accident... If you need some online resources, you might start at www.sclerodermasupport.com
Reply to Toni's first post.
Toni, I'm not a physician. I'm a scleroderma patient. I can't tell much difference between my early self-description and your present complaints.
Has your doctor blood tested for ANA (antinuclear antibodies)? A positive result *may* indicate auto-immune disease. In my humble and un-enlightened opinion, you seem to complain of symptoms consistent with some sort of mixed connective tissue disease, or perhaps undifferentiated connective tissue disease (which may inevitably evolve to predominantly feature one of its composite illnesses, namely; lupus, myositis and scleroderma).
Don't mean to put a scare in you... An MCTD diagnosis is not always bad news since treatment has evolved greatly in the past decade and most people live long, productive lives with treatment. I'm submitting my opinion based on the following complaints you mentioned:
-thyroid problems (hyperthyroid in your case)
-arthralgias (arthritis-type pain)
-neuralgia (your face pain)
-neuropathy (your carpel tunnel is an example of compressive neuropathy)
-photosensitivity (as in lupus)
-fasciculations (little spasms)
-paresthasias (tingling, other strange sensations)
-RLS (Restless Leg Syndrom - also a form of neuropathy)
-"indentations" (this could be the result of excess callogen in the skin - a strong feature, and mechanism of destruction in scleroderma)
If you test positive for ANA, your doctor will test for other auto-antibodies to specifically diagnose a disease, or rule out other auto-immune diseases non-specifically.
I'm sure you've talked to alot of competent physicians, but the fact remains that very few medical professionals have even heard of scleroderma (it is a rare disease). Scleroderma affects women four times more than men. I didn't read any complaints about cold sensitivity or colour-changes in the hands or feet. This feature, called Raynaud's Disease is often the presenting symptom, and when complimented with gastrointestinal problems, swiftly leads to speculation of scleroderma.
Scleroderma is a disease of exceptions, so I don't expect any case to follow any rules one might impose upon it. Even if your ANA is normal, it does not rule out a diagnosis of auto-immune disease if clinical features are present.
Good luck to you.
I don't think I'll be back to this site, I just happened along here by accident... If you need some online resources, you might start at www.sclerodermasupport.com
Toni, I'm not a physician. I'm a scleroderma patient. I can't tell much difference between my early self-description and your present complaints.
Has your doctor blood tested for ANA (antinuclear antibodies)? A positive result *may* indicate auto-immune disease. In my humble and un-enlightened opinion, you seem to complain of symptoms consistent with some sort of mixed connective tissue disease, or perhaps undifferentiated connective tissue disease (which may inevitably evolve to predominantly feature one of its composite illnesses, namely; lupus, myositis and scleroderma).
Don't mean to put a scare in you... An MCTD diagnosis is not always bad news since treatment has evolved greatly in the past decade and most people live long, productive lives with treatment. I'm submitting my opinion based on the following complaints you mentioned:
-thyroid problems (hyperthyroid in your case)
-arthralgias (arthritis-type pain)
-neuralgia (your face pain)
-neuropathy (your carpel tunnel is an example of compressive neuropathy)
-photosensitivity (as in lupus)
-fasciculations (little spasms)
-paresthasias (tingling, other strange sensations)
-RLS (Restless Leg Syndrom - also a form of neuropathy)
-"indentations" (this could be the result of excess callogen in the skin - a strong feature, and mechanism of destruction in scleroderma)
If you test positive for ANA, your doctor will test for other auto-antibodies to specifically diagnose a disease, or rule out other auto-immune diseases non-specifically.
I'm sure you've talked to alot of competent physicians, but the fact remains that very few medical professionals have even heard of scleroderma (it is a rare disease). Scleroderma affects women four times more than men. I didn't read any complaints about cold sensitivity or colour-changes in the hands or feet. This feature, called Raynaud's Disease is often the presenting symptom, and when complimented with gastrointestinal problems, swiftly leads to speculation of scleroderma.
Scleroderma is a disease of exceptions, so I don't expect any case to follow any rules one might impose upon it. Even if your ANA is normal, it does not rule out a diagnosis of auto-immune disease if clinical features are present.
Good luck to you.
I don't think I'll be back to this site, I just happened along here by accident... If you need some online resources, you might start at www.sclerodermasupport.com
Barbara,
Thanks for the encouraging words. I have been having several good days, so I hesitate to take the Xanax every day. It's addicting, I've read. I will take it, but will probably save it for the times I really need it.
I'm glad you are being helped by your medication!
Thanks for the encouraging words. I have been having several good days, so I hesitate to take the Xanax every day. It's addicting, I've read. I will take it, but will probably save it for the times I really need it.
I'm glad you are being helped by your medication!
Take you Doc up on the Xanax. You would be surprised what worry can do to a person and what relaxation can do to stop it. I am on 8 mg's on Klonopin a day and I don't even think about those other things only the occasional seizures when I get them. I now can get on with my life without obsessing over EBV and feeling yukky.
Ron: You might want to check out www.viramedix.com for a natural herpes product. I'm on it now in case I have chronic EBV. How did your Herpes 6 get diagnosed? I was positive for past exposure but my test did not show current infection. The doctor said many people will test positive for exposure.
Hi Ron,
Thanks for the info. It's interesting you say this. I have (or had) a tendency to get the really bad sores you get with the herpes virus (not the STD). Every year, for many years, I'd get the sore on my lip...one time is was so huge, it took over 1/4 of my lower lip! I was so embarrased to even go out of the house!! It starts with the itching in the face and you can feel it coming. Then the glands get swollen as well as the whole face. I haven't had them in years!! I wondered for a while if it WAS a virus...could it be anything like that one?
Does the Echinchea help you? I hate taking medication. One doc wanted to put me on Paxil, one on Xanax, one on Phenobarbitol! I am not taking any of those. I'm interested in knowing if the Echinachea is helping you. Please let me know and I'm glad you are better!
Toni
Thanks for the info. It's interesting you say this. I have (or had) a tendency to get the really bad sores you get with the herpes virus (not the STD). Every year, for many years, I'd get the sore on my lip...one time is was so huge, it took over 1/4 of my lower lip! I was so embarrased to even go out of the house!! It starts with the itching in the face and you can feel it coming. Then the glands get swollen as well as the whole face. I haven't had them in years!! I wondered for a while if it WAS a virus...could it be anything like that one?
Does the Echinchea help you? I hate taking medication. One doc wanted to put me on Paxil, one on Xanax, one on Phenobarbitol! I am not taking any of those. I'm interested in knowing if the Echinachea is helping you. Please let me know and I'm glad you are better!
Toni
I have had very similar symptons only much worse. After years of tests and doctors I had one doctor come up with a virus that 99% of Doctors have never heard of. It is called Herpes-6. Not a sexually transmitted disease.I take acyclovyr and everything goes away until the next attack. I am now trying a natural product to build my immune system called Echinacea. Herpes-6 mimics MS and there is no cure. Do yourself a favor and pay very little attention to doctors as they know very little about viruses. They hate feeling stupid and will make you think you are crazy.
Ron
Ron
Correction: To the Neuro Doctor....I see I in error quoted you as saying that it IS MS or ALS...my error. I meant to say IS NOT. Thanks!
To the Neuro Doctor....thanks again to your advise and help. I am reassured to hear you think this is MS or ALS. I'm not giving up til I come to some conclussion on this. I appreicate your help!
Theresa....I am so sorry you are having such a bad time. I can sympathize with you. I think to this time last year and how different life was. Will we ever be right again?? I'm not sure if my problem is thyroid related yet. My doctor has taken another blood test which I haven't gotten results of yet. I will see him on Friday, so I'll know more then. My TSH is normal. For a while, my T4 was slightly high and T3 slightly low. The next test the TSH and T4 were ok, and only the T3 is low. But not much. This past summer, my estrogen was low, so we increased my premarin. That seemed to help my shakiness alot. I still shake (inwardly), but not as much. I don't have any medical knowledge, Theresa, but all I can say is don't give up! I think sometimes we have to be proactive about our health. While the docs are wonderful people...they only have so many hours and tons of patients and of course, the insurance companies to deal with on top of everything! If you want to correspond by email, let me know your email address and I'll write you! Otherwise, we may "clog" up the space here!
Theresa....I am so sorry you are having such a bad time. I can sympathize with you. I think to this time last year and how different life was. Will we ever be right again?? I'm not sure if my problem is thyroid related yet. My doctor has taken another blood test which I haven't gotten results of yet. I will see him on Friday, so I'll know more then. My TSH is normal. For a while, my T4 was slightly high and T3 slightly low. The next test the TSH and T4 were ok, and only the T3 is low. But not much. This past summer, my estrogen was low, so we increased my premarin. That seemed to help my shakiness alot. I still shake (inwardly), but not as much. I don't have any medical knowledge, Theresa, but all I can say is don't give up! I think sometimes we have to be proactive about our health. While the docs are wonderful people...they only have so many hours and tons of patients and of course, the insurance companies to deal with on top of everything! If you want to correspond by email, let me know your email address and I'll write you! Otherwise, we may "clog" up the space here!
Dear Toni,
Your post REALLY got my attention! I have been dealing with so many similarities since February of this year. I also have thyroid disease. I have had two thyroid surgeries, the last one in 1987. Both were due to toxic multinodular goiter. I have been on synthroid since then and was doing great until 10 months ago.
I am particularly interested in your neck pain/lump over the collar bone. I have that too and it is about to drive me nuts! Mine began with those "creepy crawly" feelings (like a little worm crawling) in my right temple. This later moved downward toward the ear/jaw area, then down into the neck. I awoke one morning and was horribly swollen. My eyes were like slits, hands swollen, etc. but worst of all my neck was extremely swollen. What I thought to be either my carotid artery or jugular was swollen/poking out about the size of my thumb! Scared me to death. I have pain in this area as well as a lump over the collar bone that almost feels like blood is "pooling" over that area.
After being off of synthroid for a week (in preparation for a radioactive iodine test) is when this happened. I do suffer from frequent migraines, but I am convinced in my heart that this all stems somehow from the thyroid. My 'episodes' last from 2 to 6 weeks at a time. I even had a carotid doppler done which showed no blockage. My neuro says it could be carotidynia in relation to migraine. I saw a cadiologist who even suggested that the thyroid could be pressing against the veins in the neck. (I do have thyroid nodules again). No one has suggested to me that this could be infected lymph nodes. Sounds like a possibility. If so, what did your doctor do for it?
In addition to the symptoms you listed, I sometimes feel so weak even when lying down that I feel like I could pass out. I am sooo tired of this, just like I'm sure you are. I have had so many tests: MRI, caritid doppler, EMG, nerve conduction tests, female hormones (I'm 42), thyroid ultrasound, adrenals, etc. The only thing found with me was more nodules which have yet to be pursued, my TSH was too low (so I had suddenly become HYper thyroid and had synthroid reduced) and my epinephrines were too high (yet NOTHING was done about that!).
Do you have swelling in your neck? Tremors? Dizziness, a 'weird headache, etc.? You are the only person I have found on the net with so many similarities. At times (not at all related to period times) I have an all over severe swelling in which I gain about 6 to 8 pounds. This is when my neck hurts the worst. Makes me feel horrible. I retain so much fluid and don't know why. This past weekend I drank seven 16 oz. glasses of water from 9am til 4:30 pm before I got "results". Life is no longer as it used to be. I used to work out about 5 times a week. I find it difficult to even perform normal daily chores around the house now.
ANY info you might offer would be greatly appreciated. I am miserable also and at a loss. I plan to see a new endocrinologist in January. I still can't help but feel that this is all thyroid related. Maybe we can Email and compare notes.
Thanks,
Teresa
Your post REALLY got my attention! I have been dealing with so many similarities since February of this year. I also have thyroid disease. I have had two thyroid surgeries, the last one in 1987. Both were due to toxic multinodular goiter. I have been on synthroid since then and was doing great until 10 months ago.
I am particularly interested in your neck pain/lump over the collar bone. I have that too and it is about to drive me nuts! Mine began with those "creepy crawly" feelings (like a little worm crawling) in my right temple. This later moved downward toward the ear/jaw area, then down into the neck. I awoke one morning and was horribly swollen. My eyes were like slits, hands swollen, etc. but worst of all my neck was extremely swollen. What I thought to be either my carotid artery or jugular was swollen/poking out about the size of my thumb! Scared me to death. I have pain in this area as well as a lump over the collar bone that almost feels like blood is "pooling" over that area.
After being off of synthroid for a week (in preparation for a radioactive iodine test) is when this happened. I do suffer from frequent migraines, but I am convinced in my heart that this all stems somehow from the thyroid. My 'episodes' last from 2 to 6 weeks at a time. I even had a carotid doppler done which showed no blockage. My neuro says it could be carotidynia in relation to migraine. I saw a cadiologist who even suggested that the thyroid could be pressing against the veins in the neck. (I do have thyroid nodules again). No one has suggested to me that this could be infected lymph nodes. Sounds like a possibility. If so, what did your doctor do for it?
In addition to the symptoms you listed, I sometimes feel so weak even when lying down that I feel like I could pass out. I am sooo tired of this, just like I'm sure you are. I have had so many tests: MRI, caritid doppler, EMG, nerve conduction tests, female hormones (I'm 42), thyroid ultrasound, adrenals, etc. The only thing found with me was more nodules which have yet to be pursued, my TSH was too low (so I had suddenly become HYper thyroid and had synthroid reduced) and my epinephrines were too high (yet NOTHING was done about that!).
Do you have swelling in your neck? Tremors? Dizziness, a 'weird headache, etc.? You are the only person I have found on the net with so many similarities. At times (not at all related to period times) I have an all over severe swelling in which I gain about 6 to 8 pounds. This is when my neck hurts the worst. Makes me feel horrible. I retain so much fluid and don't know why. This past weekend I drank seven 16 oz. glasses of water from 9am til 4:30 pm before I got "results". Life is no longer as it used to be. I used to work out about 5 times a week. I find it difficult to even perform normal daily chores around the house now.
ANY info you might offer would be greatly appreciated. I am miserable also and at a loss. I plan to see a new endocrinologist in January. I still can't help but feel that this is all thyroid related. Maybe we can Email and compare notes.
Thanks,
Teresa
Dear Toni:
There is little chance that you have ALS as you have sensory symptoms. In addition, you do not have demonstratable muscle weakness on exam while you have fasciculations. It also doesn't sound like you have MS as your symptoms are not waxing and waning. In addition, your brain MRI is normal and with the symptoms you describe the MRI would likely be abnormal. Post-viral syndrome is a possibility but I didn't mention it because it is a bag-term often used when a diagnosis cannot be firmed up. The large lymph node may be suggestive, in addition, the fasciculations may also be seen in post-viral syndrome. Furthermore, there is a condition known as benign fasciculations (a diagnosis of exclusion) where a patient will have fasciculations for no apparent reason. Here the fasciculations get worse with fatigue or anxiety. In either of the past two conditions, time is the healer.
Sincerely,
CCF Neuro MD
There is little chance that you have ALS as you have sensory symptoms. In addition, you do not have demonstratable muscle weakness on exam while you have fasciculations. It also doesn't sound like you have MS as your symptoms are not waxing and waning. In addition, your brain MRI is normal and with the symptoms you describe the MRI would likely be abnormal. Post-viral syndrome is a possibility but I didn't mention it because it is a bag-term often used when a diagnosis cannot be firmed up. The large lymph node may be suggestive, in addition, the fasciculations may also be seen in post-viral syndrome. Furthermore, there is a condition known as benign fasciculations (a diagnosis of exclusion) where a patient will have fasciculations for no apparent reason. Here the fasciculations get worse with fatigue or anxiety. In either of the past two conditions, time is the healer.
Sincerely,
CCF Neuro MD
Thank you for your prompt reply. I have, over the last 6 months, done as you have suggested. So far, I still have no answers. Do you suggest repeating any of the tests I have had before? Perhaps somethings would change over the 6 month period. I have read that some tests for Lyme are not as accurate as others. Maybe I should ask for a repeat of the Lyme test. Do any of my symptoms sound like MS (though my doc says I'm too old for it), or ALS (which scares me). I've also read about Post viral syndrome. Do you think that the lump I had could have been related to a virus? I had no fever that I was aware of. My husband and I are ready to take me to a Clinic, such as Cleveland or Mayo. We are at our wits end! Thanks for your time.
Dear Toni:
I am sorry about your symptoms. With all your testing normal thus far (except what is already known) I can't think of much to tell you. The symptoms that you describe don't seem to have a demonstrated physical correlate on the physicial exam. This doesn't mean that what your feeling is not real to you, but that neurologically it is difficult to localize or diagnose. I think I would start from the medical history, detail what you think is important, everything from your sleeping pattern to diseases. Then be sure to know why each medication you take is for and when it was started. Take all your records with you concerning lab work and imaging. Hopefully, this material and the physical exam will give the physician a direction to investigate. Without this material, I am at a loss to give you a direction. I am sorry.
Sincerely,
CCF Neuro MD
I am sorry about your symptoms. With all your testing normal thus far (except what is already known) I can't think of much to tell you. The symptoms that you describe don't seem to have a demonstrated physical correlate on the physicial exam. This doesn't mean that what your feeling is not real to you, but that neurologically it is difficult to localize or diagnose. I think I would start from the medical history, detail what you think is important, everything from your sleeping pattern to diseases. Then be sure to know why each medication you take is for and when it was started. Take all your records with you concerning lab work and imaging. Hopefully, this material and the physical exam will give the physician a direction to investigate. Without this material, I am at a loss to give you a direction. I am sorry.
Sincerely,
CCF Neuro MD
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