I have been having the following symptoms recurring on & off for the past 6 months:
- Nausea (severe)
- Headaches
- Fatigue (severe)
- Cold tingling feet & hands
- Hands locking up
- Foggy/Feeling a mental disconnect
- Loss of some sensation right foot (can’t feel vibration or cold temperature well)
The symptoms have remained stagnant in strength and come and go mostly at random. They have not worsened. I do however notice them more when I am relaxed at night & when I wake up in the morning.
I went in to have an EMG test done and was told that I have a demyelinating polyneuropathy & a conduction block in my leg where my sciatic nerve splits. They weren’t able to find the nerve at all. 3 different doctors performed the test and none were able to get a reading. They told me that based on the readings I should be completely paralyzed in one leg. Other than the symptoms above, I am fine and function normally at work & home. I haven’t lost any muscle strength - all motor skills are intact. I am a 31 year old in-shape male. They also told me they have never seen these test results in someone with a functioning leg.
I was sent to the hospital for a spinal tap to test my CSF & also get blood work done. The only abnormal results showed:
- EOS%: 4.2 (high)
- Total Protein CSF: 53 (high)
- Bedside Glucose: 153 (high)
- Carbon Dioxide: 3.2 (high)
I was diagnosed with CIDP (even though my symptoms don’t all line up with this disease) & sent home to wait for further test results. I know how quickly a neurological disease can escalate and am therefore reaching out for any potential solutions.
My 2 main questions are:
1) Has ANYONE ever seen a conduction block on a person who is not paralyzed.
2) Has anyone seen a similar illness presentation - if so what was the diagnosis & how was it treated?
Thank you SO much!
Prior to then had you been prescribed any medications that this might have been a delayed side effect from?
As far as I can remember, the only medication I was given within the past year was a steroid and also some medicine for thrush. I did have an odd reaction and stopped taking the steroid after just one dose. It had me awake all night. I just switched my pcp so I plan to get a full detailed history from my old pcp Monday. Other than those 2, nothing that my wife or I can think of though.
Ask if you have ever been prescribed Cipro or any of the Fluoroquinolone group for your thrush or anything else.. They can produce symptoms like that up to a long time later and can be triggered by later drugs like steroids.
Thank you! I will find out and keep you posted
Astonishing with your EMG results that you are walking normally. Did they not suggest a head MRI scan? Presumably there is nothing similar in other family members past or present.
They did suggest a head MRI. However my EMG test was done first and the results were so “impressive” as they phrased it that I was sent immediately to the ER before I was able to have the head MRI. I had asked the doctor who performed the LP if I needed a head MRI prior to my LP & he said not to worry about it... turned out he was in training!
I should also note that 3 years ago I had spinal surgery for a ruptured disc and was informed that another disc in there was herniated & would soon need to be addressed. They are convinced that this is not what is causing my issue though. I believe they said I would be in pain if this were the case - and I am not. They also said the readings on the EMG informed them that the myelin was deteriorating. I would still like to get the MRI though. Honestly, I would like to get any useful test possible done. I would do a full body MRI if it would potentially help with gaining an accurate diagnosis. I even asked the doctor who did the LP if adding a dye through my spine & then receiving an MRI would be a good option since we are already going to be doing the LP anyway. Better than going in twice I thought. But again, I later found out he was in training.
Nothing similar in any family members that I know of. My grandfathers on both sides are no longer around so I need to ask further there.
I would be inclined to ask if they had any more odd results from their equipment after you.
The first person to perform the test was a family member. She then called in 2 others to perform the test to make sure she wasn’t missing something. I’m fairly certain she would have informed me if there were other results that were odd that day. I have actually considered getting retested with a different EMG machine but assumed it was just me not wanting to accept the results. Especially since I have been experiencing symptoms that line up with a neurological issue. I don’t know much about EMG’s though. Is it really that odd that they couldn’t find my nerve and I walk just fine - even play baseball with no problem? If so then perhaps you are right and a test elsewhere may be warranted? They do want me to come back in a month to do the test again but that seems so far away right now.
As they are going to retest in a month and you are able to function well enough to play baseball I would wait.
Thanks! I’ll let you know how everything goes tomorrow when I get my history from the doctors.
Called the doctors office today. The girl who is in charge of records comes in tomorrow so I’ll need to speak w her. They told me it’s $1 per page for my records and that it could take up to 2 weeks to send them. That seems like a long time to print something out. I’m going to ask if I can stop by to pick them up in person when I speak to her tomorrow.
I'm surprised that you cannot log on to your doctors site to access your medical records. Actually EMIS who run Patient UK are one of the UK companies who provide the service for GP's.
This doctor was a small family-run practice. It is definitely much better having everything online! I spoke with them today and was able to push the date that it will be ready up to Monday.
Got the medical history today... you were right about the Fluoroquinolone! I was given Levaquin. I actually stopped taking it because I noticed side effects - they have it listed under drug allergies now.
You don't need to take it for long to have problems with it. I was prescribed drugs from that family four times and each time I quickly stopped when I developed tendon problems. The other effects started much later.
The things I’m reading about this drug are sickening! It’s used for anthrax exposure, the plague & cancer patients. It has been deemed unsafe by the FDA & FDA has stated the risks outweigh the benefits for sinusitis or bronchitis cases. It’s supposed to be a last resort!!! Why would this guy prescribe this so easily with no warning. He also gave me the flu vaccine while I was taking this medication which is known to interact with heavy metals such as aluminum - an ingredient in flu vaccines. Thank you so much for your help!! I’m not sure I wouldn’t have made this connection without you. I will keep you posted. Follow up with neurologist on Friday and I am curious to see what he has to say about it. Going to fax these records over to him tomorrow.
The European Medicines Agency had an open conference in London in June with patients from all over the world giving their reports on the damage caused. Various doctors who are treating patients and investigating the drug gave their opinions. .
It is the cause of Gulf War Syndrome as troops were given it. It was also given to US Mailmen because of threats of anthrax in the post.
If you go to Youtube and put in European Medicines Agency (EMA) the conference should come up or I can send you a link to it. It lasts over four hours but you can watch it in parts.
You will be fortunate if your neurologist is aware of this.