Aa
Hopkins
Well back from Hopkins A little background for those new to my tale of woe.
In October 2007 I started with vertigo, dizziness triggered visually. By December I could not walk, stand, write, type, drive without something to support my neck. I had a hundred fasciculations and hour, twitches and jerks. I had burning, tingling, numbness over my entire body. Jaw fatigue and joint pain that jumped around. Deep muscle pain like I had never felt before. Ringing in my ears..the list goes on and on.
4 MRI all clear, tons of blood work all normal except my vitamin D. January emg revealed Axonal peripheral neuropathy in 3 out of 4 limbs. I was placed on antibiotic by my PCP for possible Lyme disease because I had a known tick bite in June 2007. Western blot negative. When asked “any bands positive” response “yes band 23 on the IgM” I am considered Lyme positive by a Lyme doctor not by infectious disease or CDC. This was not an Igenex test.
I am on 3000 mg of amoxicillin and have been on that does since 3/27. On antibiotics all together since the end of January. Last week I had six consecutive days of NO symptoms. Return of hand and foot pain and burning on Saturday.
HOPKINS
In a nut shell they do not know what is wrong with me. The first Neuro feels that I do not have ALS or MS because I have a clean MRI. With regards to Lyme disease he states" I doubt you have Lyme....but it is possible" He ordered skin biopsies of 3 areas on my left leg to look at the nerve function and an EMG/nerve conduction. He feels I am medical mystery and we may never the cause of my issues. He did bring up migraines as a cause and I responded with “a migraine can last 4-5 months and cause leg fatigue to the point of not being able to stand?" No response.... I have not suffered from headaches....yet
The emg and nerve conduction was done by the head of neurology. The nerve conduction was significant for serious left ulnar involvement and moderate on the right arm AKA carpel tunnel syndrome which I suffer no discomfort. I am not to put my elbow on the door of the car while driving and talking on the phone anymore!!! I no longer present with axonal peripheral neuropathy. The emg was on done on my left leg and arm only .... 3 spots on each limb. He also feels that ALS is not a concern. MS not a concern because MRI's are clean. He then stated that when people like me come back with no negative test results then chronic fatigue and fibromyalgia are in the running.....He then told me to look at life style like exercises. Well I was ticked! I told him I used to be able to exercise 3-4 times per week..eat healthy etc until I got my butt kicked by some “medical mystery”
I met with infectious disease on the Friday before I left for Hopkins he still feels that I don't have Lyme however very pleased that I have had relief from my symptoms. I asked him what his opinion was on if/when should I go off the antibiotics the Lyme doc put me ... he said that he couldn't tell me I should go off of them yet..”What if you get sick again?”he is deferring back to the Lyme doc and told me he just did not know what was wrong with me and that Hopkins was the place for me.
No answers only more questions. I am feeling much better and have 90% of my life back. I am going to meet with the Lyme doc in a couple of weeks. The fact the neuropathy is no longer present is an indication to me that the current line of treatment is working.....but what do I know! By the way Hopkins doesn’t believe I ever had peripheral neuropathy. They think the my neuro screwed the test up. I can see one limb but 3 limbs?. That’s my story!
Thanks everyone for your thoughts, prayers, notes and PM etc. They have meant a lot!
Rebeccah
In October 2007 I started with vertigo, dizziness triggered visually. By December I could not walk, stand, write, type, drive without something to support my neck. I had a hundred fasciculations and hour, twitches and jerks. I had burning, tingling, numbness over my entire body. Jaw fatigue and joint pain that jumped around. Deep muscle pain like I had never felt before. Ringing in my ears..the list goes on and on.
4 MRI all clear, tons of blood work all normal except my vitamin D. January emg revealed Axonal peripheral neuropathy in 3 out of 4 limbs. I was placed on antibiotic by my PCP for possible Lyme disease because I had a known tick bite in June 2007. Western blot negative. When asked “any bands positive” response “yes band 23 on the IgM” I am considered Lyme positive by a Lyme doctor not by infectious disease or CDC. This was not an Igenex test.
I am on 3000 mg of amoxicillin and have been on that does since 3/27. On antibiotics all together since the end of January. Last week I had six consecutive days of NO symptoms. Return of hand and foot pain and burning on Saturday.
HOPKINS
In a nut shell they do not know what is wrong with me. The first Neuro feels that I do not have ALS or MS because I have a clean MRI. With regards to Lyme disease he states" I doubt you have Lyme....but it is possible" He ordered skin biopsies of 3 areas on my left leg to look at the nerve function and an EMG/nerve conduction. He feels I am medical mystery and we may never the cause of my issues. He did bring up migraines as a cause and I responded with “a migraine can last 4-5 months and cause leg fatigue to the point of not being able to stand?" No response.... I have not suffered from headaches....yet
The emg and nerve conduction was done by the head of neurology. The nerve conduction was significant for serious left ulnar involvement and moderate on the right arm AKA carpel tunnel syndrome which I suffer no discomfort. I am not to put my elbow on the door of the car while driving and talking on the phone anymore!!! I no longer present with axonal peripheral neuropathy. The emg was on done on my left leg and arm only .... 3 spots on each limb. He also feels that ALS is not a concern. MS not a concern because MRI's are clean. He then stated that when people like me come back with no negative test results then chronic fatigue and fibromyalgia are in the running.....He then told me to look at life style like exercises. Well I was ticked! I told him I used to be able to exercise 3-4 times per week..eat healthy etc until I got my butt kicked by some “medical mystery”
I met with infectious disease on the Friday before I left for Hopkins he still feels that I don't have Lyme however very pleased that I have had relief from my symptoms. I asked him what his opinion was on if/when should I go off the antibiotics the Lyme doc put me ... he said that he couldn't tell me I should go off of them yet..”What if you get sick again?”he is deferring back to the Lyme doc and told me he just did not know what was wrong with me and that Hopkins was the place for me.
No answers only more questions. I am feeling much better and have 90% of my life back. I am going to meet with the Lyme doc in a couple of weeks. The fact the neuropathy is no longer present is an indication to me that the current line of treatment is working.....but what do I know! By the way Hopkins doesn’t believe I ever had peripheral neuropathy. They think the my neuro screwed the test up. I can see one limb but 3 limbs?. That’s my story!
Thanks everyone for your thoughts, prayers, notes and PM etc. They have meant a lot!
Rebeccah
Sorry about that - I somehow hit the submit button!!
Out of curiosity, did you bring up the fact that fibromyalgia and CFS do not cause the type of swallowing difficulties you have experienced - if nothing else, the difficulty initiating a swallow you and I discussed should at least rule out those two disorders.
I am so, so sorry you didn't get the answers you needed - but I sure am glad you are feeling better, and certainly there is a clue in the fact that the antibiotics are working. Hang in there, and I hope you continue to feel better - Shannon
Out of curiosity, did you bring up the fact that fibromyalgia and CFS do not cause the type of swallowing difficulties you have experienced - if nothing else, the difficulty initiating a swallow you and I discussed should at least rule out those two disorders.
I am so, so sorry you didn't get the answers you needed - but I sure am glad you are feeling better, and certainly there is a clue in the fact that the antibiotics are working. Hang in there, and I hope you continue to feel better - Shannon
Hey there! Glad you got back safe from your trip. How disappointing it must have been for you to hear "I don't know what's wrong", but thank God they can at least rule out ALS for you finally!!!!
Hi Rebeccah, I am very happy to hear you have experienced a small amount of relief. Gosh, maybe is the Lyme? We think if anyone should know, it should be these big places, and so many people never get any answers there either. Nothing like being an enigma :(
But at least you have felt improvement and that means the world. Hugs to you
Jazzy
But at least you have felt improvement and that means the world. Hugs to you
Jazzy
I am VERY grateful for the recovery I have experienced and if 90% is it .........well then I can't complain. I would like to get to where I have more than 6 consecutive days in a row of no symptoms. I can walk…I can hug my kids……I can work (which I enjoy)….life is better.
Rebeccah
Rebeccah
I AM SO SORRY YOU HAD TO ENDURE THE RATH OF ANOTHER DISAPPOINTING DRS APPOINTMENT.
THESE DRS. HONK ME OFF,WHEN IT COMES TO WOMEN THEY LOVE TO PASS IT OFF ON ANXIETY OR MIGRAINES.
LORDY,I SEEN MY NEUROSURGEON IN MARCH FOR A LUMBAR DISEASE,AFTER READING HIS REPORT HE HAD DOWN CRONIC MIGRAIN SYNDROME,HELLO,ONLY IF MY HINEY WAS ON MY SHOULDERS.OH,I CALLED HIS OFFICE AND TOLD THAT DR. HE BEST GET THAT OUT OF MY MEDICAL RECORDS.I TOLD HIM THE ONLY HEADACHE I GET IS FROM DRS THAT PUT FALSE INFORMATION IN THERE REPORTS !!!!!!!
I AM GLAD YOU ARE GETTING RELEIF WITH THE ANTIBIOTICS AND GETTING 90% OF YOU LIFE BACK,I'M SO HAPPY FOR YOU, CAN'T THE LYME DR. DO THE IGENTIX LYME TEST?
SWEETIE SOME DRS. SEEM TO THINK SINCE THEY WORK FOR A LARGE CLINIC THEY ARE GOD,AND THAT OTHER DRS. ARE INADEQUATE AT WHAT THEY ARE DOING FOR THEIR PATIENTS.
I JUST CAN'T SEE A EMG/NCS BEING WRONG IN ALL 4 LIMBS.I HAD THAT HAPPEN AT A LARGE CLINIC THEY DONE A EMG/NCS AND STATED IT WAS PERFECTLY FINE.I HAVE SUFFERRED FROM SPINAL PROBLEMS FOR 15 YEARS AND HAVE HAD SEVERAL OF THESE TEST AND HOW CAN SO MANY NEUROLOGIST BE WRONG FOR 15 YEARS AND THEIR TEST BE NORMAL OVER NIGHT.
WISH I HAD ANSWERS,BUT SENDING YOU HUGS AND PRAYERS
T-LYNN
THESE DRS. HONK ME OFF,WHEN IT COMES TO WOMEN THEY LOVE TO PASS IT OFF ON ANXIETY OR MIGRAINES.
LORDY,I SEEN MY NEUROSURGEON IN MARCH FOR A LUMBAR DISEASE,AFTER READING HIS REPORT HE HAD DOWN CRONIC MIGRAIN SYNDROME,HELLO,ONLY IF MY HINEY WAS ON MY SHOULDERS.OH,I CALLED HIS OFFICE AND TOLD THAT DR. HE BEST GET THAT OUT OF MY MEDICAL RECORDS.I TOLD HIM THE ONLY HEADACHE I GET IS FROM DRS THAT PUT FALSE INFORMATION IN THERE REPORTS !!!!!!!
I AM GLAD YOU ARE GETTING RELEIF WITH THE ANTIBIOTICS AND GETTING 90% OF YOU LIFE BACK,I'M SO HAPPY FOR YOU, CAN'T THE LYME DR. DO THE IGENTIX LYME TEST?
SWEETIE SOME DRS. SEEM TO THINK SINCE THEY WORK FOR A LARGE CLINIC THEY ARE GOD,AND THAT OTHER DRS. ARE INADEQUATE AT WHAT THEY ARE DOING FOR THEIR PATIENTS.
I JUST CAN'T SEE A EMG/NCS BEING WRONG IN ALL 4 LIMBS.I HAD THAT HAPPEN AT A LARGE CLINIC THEY DONE A EMG/NCS AND STATED IT WAS PERFECTLY FINE.I HAVE SUFFERRED FROM SPINAL PROBLEMS FOR 15 YEARS AND HAVE HAD SEVERAL OF THESE TEST AND HOW CAN SO MANY NEUROLOGIST BE WRONG FOR 15 YEARS AND THEIR TEST BE NORMAL OVER NIGHT.
WISH I HAD ANSWERS,BUT SENDING YOU HUGS AND PRAYERS
T-LYNN
I did say a prayer for you yesterday!! Wow, so much of your story sounds familiar to me. I almost feel like the more doctors that I see, the less I know. I love the "standard diagnosis" of it's a migraine. It's especially entertaining when you aren't even suffering from migraines. If they don't know, I would rather just leave it at that!
I honestly don't know that much about fibromyalgia and CFS. Do they come on suddenly, or is it more gradual. I know that antibiotics don't help them! I am so glad that you were pro-active and now don't show axonal peripheral neuropathy. (That in itself is a victory for you) Another irritating thing about doctors is how they just discount the symptoms/test results that don't fit into their "diagnosis". (is there something besides lyme disease that would explain all of this??)
Are you going to keep searching for more answers, or be happy with the 90%?
Stacey
I honestly don't know that much about fibromyalgia and CFS. Do they come on suddenly, or is it more gradual. I know that antibiotics don't help them! I am so glad that you were pro-active and now don't show axonal peripheral neuropathy. (That in itself is a victory for you) Another irritating thing about doctors is how they just discount the symptoms/test results that don't fit into their "diagnosis". (is there something besides lyme disease that would explain all of this??)
Are you going to keep searching for more answers, or be happy with the 90%?
Stacey
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