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Worried about neuro symptoms - any thoughts?

This may well not be connected but about 9-10 months I developed an infected rash on my chin for which my doctor perscribed anti-biotics. I then started experienced pains in the back of my arms (near the elbow) and cramping just below the ribs. I had a blood test for my white blood cell count, mono, and even visited a tropical disease department (I had been in south east asia 10 months ago) and all tests came back fine. However about 3 months ago I started getting pins-and-needles in my hands and arms which was shortly followed by:

- twitching in my left eye lid and lower lid. Went on for 2 weeks non-stop at one point but continues on-and-off daily.
- spasming muscles (all over my body but especially in the legs and bottom of my feet).
- a sort of static like buzzing/vibrating feeling in my legs (very strange feeling)
- pain in the top left hand side of my back
- one ear feels quite blocked (a numb pressure)
- On the upper thigh of both legs I can feel a strange lump under the skin.
- tiredness (maybe caused by feeling down due to the above symptoms)

I am waiting for my referal to a neurologist which I am waiting on the appointment.

These are the freakiest and most unsettling feelings I have ever had. It feels like im part of a David Cronenberg movie with things happening inside my body which I have no control over.

Has anyone had similar symtoms? Any thoughts?

Thanks in advance,

Mark
34 Responses
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Avatar universal
It sounds like you would need a neurosurgeon to look at your MRI films. They would know best !
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vb
would you have surgery on c6-7 and if so by what type of doctor
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Thank You for your reply. Just recently my son had BIG list of blood work studies. One being Lyme and Western Blot results were good -Negative.
Are their other studies that are more accurate ?
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Avatar universal
Hi All
I wonder if some one can help me as im very scared. i have has twitches in my body for a while it started in my belly ( thought i was pregnant at one point now it moved around my body. now some times off and on my tongue feels funny like its sort of swelling. i have had the odd twitch in it. When i say twitching in my body it just one twitch not constant twitching. I also get like a buzzing in maybe my ankle and some times my knee. i wake up in the morning and my pulse is racing. i havnt got any weakness at all well i dont think i have. Im just so scared i have got ALS it is destroying me. i cant think of nothing eles im 32 and i have 4 children and i just keep thinking the worse all the time. i get tremors to and some times i get like an electric feeling its not a pain a sorts just a feeling when im sat at the computer mu toes can go numb. the thing that worrying me the most i spose is the toongue thing i read about als on the net and now im conviced i have it. Please can some one help me.
vicki
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Avatar universal
Hi All
i also have had a episode of my theig burning and i had to put a damp cloth on um to cool um they dont feel when touch that they are burning they just feel like they are i also get some time a feeling i have something crawling on my skin and i get sharp pains in my head sometimes my eyesand my finger tips. my head also feels thick sometimes im just so scared about this.
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Avatar universal
Did you know that Chiari is heriditary, and your husband can have a 0mm malformation and the only way to find out if he does is to go to the experts, there are not many out there, but only a Chiari expert can find a 0mm malformation.
  The Chiari that your childern have could be coming from their father. check out the Arnold Chiari Malformation site, i belong to that site, and have a support group of my own here in Colorado. This is a very deciving disorder, the loss of use of his legs support the disorder, has he had a MRI of the spine? He may have a syrinx, i do, the length of my whole spine.
  If you would like to e-mail me private, my e-mail is ***@****   just put chiari in the subject box, i usually won't open e-mails from someone i don't know.
  Good Luck, Kathy
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Avatar universal
Hi Kathy :
Its strange that you mentioned Chiari Malformation. My middle child (age 14 Boy) has just been recently diagnosed with Chiari Malformation. My youngest child (age 10 girl) was diagnosed in her infant years with Dandy Walker Variant. I am told they are in the same category.
My husbands cranial MRI's do not show any of this. I am at my wits end with going to the neurologist with him and leaving with no dx's.
He is losing more and more of his leg activity as the days go by. My husband has other medical issues such as diabetes, high BP. My son is currently on Periactin 8 mg but still getting Migraines and recently started complaining of stiffness in his joints ( wrist, knees, elbows). Thank you for your info.
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Avatar universal
Infectious rashes are common and can occur from a wide variety of organisms such as viruses, bacteria (strep), Lyme, mycobacteria etc
The other symptoms you describe can also be consistent with for exmaple a viral infection
In this case, a primary neurological disorder is less likely
Drug side effects are also possible - although your symptoms are not typical for mononeuritis multiplex or peripheral neuropathy as mentioned
Antibioitcs are some of the most toxic or side effect prone drugs we have, including foro example the penecillins
However, without antibiotics, countless lives would have been lost to infection

To diagnose whether you have a neurological condition or not, you need a formal neurological examination by a neurologist as you are doing, then appropraite testing with for example nerve conduciton studies or EMG to pick up a nerve or muscle problem. You should continue to follow with your medical doctor as a neurological disorder may not be present, and your symptoms may be due to something else.

Good luck
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Avatar universal
It sounds like your husband is in a lot of debilating pain at a young age, my heart goes out to him as i am 40 and have what they call a Chiari Malformation, it is a rare disorder, but i am wondering if it might be worth you checking it out, the pain you describe, and the Neurologists being un able to find it suggests he might have this disorder, i am enclosing some web sites for you to check out.   www.chiarione.org    and     www.chiari-syringo-news.org    this will give you some information, and if his symptoms seem to match up then you may be on to something, and the only way to find out if he does have this is with an mri of the brain and spine. It's sad but sometimes we have to be our own doctors and do our own investigations. I am 65% disabled now and have had one decompression (brain) surgery, and am going for a second this year, the sad thing is if the doctors would have listened to me three years ago i would have been fine and still been working. My best of luck to you. Kathy
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Avatar universal
Hi CarlW...

The lump on the left thigh would at times be not very noticable been then other times be more prominant. It went on like this for a while but now is there all the time. Then the lump started developing on the right thigh as well and now is also there all the time. Sure it could be a coincidence and be something perfectly harmless such as fatty build up but they have never been there before and with the other symptoms I suffer from it makes me wonder if its connected. It does seem strange.

Thanks,

Mark
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Avatar universal
Hey, if you have a lump in the same place on both thighs, don't you think perhaps those lumps are supposed to be there? Just a thought.
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Avatar universal
I don't know if this additional information will be of any use but I just remembered that shortly after the symptoms began I developed what was said to be "Molluscum Contagiosum". This was treated using liquid Nitrogen.

I have seen that a fungel infection called "cryptococcal" can mimic molluscum and can also effect the nervous system. But... I don't really know enough about any of these conditions.

Any ideas? Help!
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Avatar universal
hEY, i AM SORT OF NEW AT THIS, WAS TRYING TO POST A QUESTION, BUT TO NO AVAIL IT WILL HAVE TO WAIT. ANYWAYS,INTOXICATON TO QUINOLONE IS A VERY GOOD SUGGESTION. HAVE YOU LOOKED AT THE POSSIBILITY OF REACTIVE ARTHRITIS. AN ADULT FRIEND HAD A CHILDHOOD VIRUS(5TH DISEASE), RASH, AND EVEN THE DR.'S THOUGHT SHE HAD LYME'S. SHE ACTUALLY WAS DX'D WITH REACTIVE ARTHRITIS. IT AFFECTS EVERY MAJOR JOINT IN THE BODY AS AN ADULT. IT IS USUALLY CAUSED FROM AN INFECTION.
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Avatar universal
Hi again,

I know the internet can be a dangerous place when trying to self diagnose (it becomes more a case of "what don't I have?!!" rather than what do I have) but I found something else that looks like it could fit some of my symptoms - Cysticercosis. It's an infection caused by the pork tape worm and can cause lesions and neuro problems. The reasons I think this is a posiblity is that it often causes lumps under the skin (I have a smallish lumps under the skin of each thigh) and seems to be quite a common infection in Asia - which is where I was just before I started getting the initial symptoms.

Do you think im going off the right path? Or is anyone familiar with this parasite?

Thanks,

Mark
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Avatar universal
You always get worse before you get better. You can feel progressively worse for 6 months to more than 2.5 years (only in severe reactions, that your husband probably doesn't have). During this period, existing symptoms get worse, and new ones develop. Then everyone tends to get better. The improvement can be quite complete or not, again the lattest reserved for severe intoxications, that leave irreversible, for life sequela.

In www.fluoroquinolones.org you have the expected evolution of the recovery for different grades of toxicity, based in the study of several hundred of cases of victims, very well documented.

I don't understand how a medication that causes hundred of thousands of irreparable injuries that become apparent months after completing the treatment, can be handed out like candy and is not reserved for critical infections or life and death cases.

You can say you are lucky because nearly all victims are wandering around, visiting dozens of doctors each in search for a diagnosis of their problems, only to be told that the problem is in their minds, that they are too anxious, or that they suffer from fibromyalgia or every sort of neurological disorders.
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Avatar universal
Last night I printed all the info from fq.org.  It was amazing.
My husband and I read all of it.  We finally feel very confident that he is suffering  from floxing.  It has taken seven months to find this information. Thank you, sincerely, for your help. I am going to write the doctor at the Mayo Clinic
(we went three different times) and give him the info.
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Avatar universal
Thanks for all the useful info Johnflox. I don't think that the antibiotics ive taken fall into the quinolone category but I will certainly follow up on this.

I am still waiting for my appointment with a neurologist and hope I don't have to wait too long. However because so many of my symptoms tally with those shown on the Canadian Lyme website I have booked to visit a lyme specialist in 2 weeks time. Unfortunetly I live in London England and the doctor is based in Cardiff Wales (I have to go to a different country to find a doctor that knows about Lyme!!). Obviously it may turn out not to be Lyme but this is one of the best leads ive had so far.

Thanks again,

Mark
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Avatar universal
I am glad you feel confident about the real cause of your husband's illness. If you mean the info at fluoroquinolones.org, just today was updated, but essentially it remains with the same content.
Don't expect too much of the effect of the information that you have gathered. Doctors are very reluctant to pay any heed to information collected by patients, irrespectively of whether it has taken years of research to assemble it to top-notch not medical professionals.
Many floxies have visited Mayo and they have not met any doctor prone to listen to the quinolone "theory". I hope it doesn't happen the same to you. Let us know about your experience at Mayo because it could help a lot of people once the top medical centers are aware of this vast problem.
I would suggest them to call Dr. Flockhart, head of the pharmacological department of the Indiana University, because he really knows much about this problem.
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Avatar universal
Thanks so very much for responding.  Looked up www.fluoroquinolones.org and got a lot of info.  Also, my husband started  symptoms in  June and in the last six weeks they are getting worse.  Do you get worse before you get better?
Thanks
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Avatar universal
Hi Carol... thanks for the reply and for posting that link.

I have to say that many of the symptoms outlined seem to correspond to mine. I will see my neurologist and unless something else obvious shows up in the results I will have to try and find a Lyme specialist here in England (if there are any!). I'll have to read more about Lyme disease as im not sure in what parts of the world the lyme tick is found. I have only been in the UK and South East Asia.

Thanks again,

Mark
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Avatar universal
Reactions to Avelox and other quinolones become apparent (in the vast majority of cases) some months after completing the treatment.

Maybe your husband has a not very severe reaction to Avelox and can heal soon. You have a divulgative report about the toxic profile of quinolones at:

www.fluoroquinolones.org

You also have a very comprehensive database at:
www.fqresearch.org

It is almost impossible to find a doctor that has just a notion about the toxicity of quinolones, eventhough these antibiotics have an extremely high percentage of reactions, that reaches 100% for some therapeutic doses. Dr. Flockhart in the University of Indiana has seen several hundred cases. See or contact also Dr. Cohen, at www.medicationsense.com, because he also has some knowledge about it.

A handful of other doctors have deducted that there is this enormous silent epidemic of people damaged by quinolones, and refuse to prescribe them.
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Avatar universal
First time here.  My husband has been suffering with symptoms similar to those of floxing.  He took Avelox last March for sinutitis, then two weeks later, Prednisone.  He didn't have any symptoms until June 11-woke up feeling weak and "foggy".  It went away for about two weeks, then came back with a vengeance on July 9th.  We have been to so many drs. and the Mayo clinic.  All tests show in or just above normal range.  He has not returned to work and has been denied "disability" because of no diagnosis.
His symptoms are depersonalization, tingling, burning and numbness.  Just before he falls asleep or just after he has a wave of "burning" all over him which keeps him from sleeping.  He is very weak,  has ringing in his ears and "floaters".Also, he just had a spinal tap and his protein was borderline high.  

My questions are:  Is it possible to have a response from Avelox three months later?  and--Where is there  a doctor or clinic that acknowledges this and will help with symptoms/treatment?  Please help. Thanks.
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Avatar universal
Oh and also thanks patsy10 for the link :)
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Avatar universal
Thanks for posting about Lyme disease. It is one of the posibilities I wanted to discuss with my neurologist. I am not sure if all my symptoms fit but... im not really sure what my symptoms fit with!

My cousin has MS and obviously this is a worry for me. However I don't think I have noticed any muscle weakening which is slightly reasuring.

Thanks again,

Mark
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