Aa
MS, FMD, Vasculitis, or none of the above??
The Mayo confirmed my imaging does show FMD (fibomuscular dysplasia) and that my aneurysm (left carotid artery) is healed. My history has never been posted here so I'll give a brief summary:
August 2001, extreme headache that could not be relieved with narcotics... angiogram of the brain showed a dissection in the left carotid artery. Put on Neurontin and Plavix to prevent stroke. Continued to increase the dosage of Neurontin to relieve the headaches, currently at 2700mg per day. On 12/10/01 taken to ER with symptoms of stroke, numbness and prickly sensation started at feet and progressed to face, spasms in left leg, arm, and eye. Couldn't walk, left leg too weak, got a little better over night. Hospital did MRI and LP and released me. Since 9/01 I have about $80,000 worth of imaging. MRI/MRA/MRV of brain and neck, regular MRIs, CTs, 2 angiograms, plus 2 LP, 3 full blood workups, 2 EEGs, EMG, everything pretty normal except the angiograms showing the dissection and the MRIs showing at least 12 lesions.
I have had 3 of these "episodes" in total; 12/10/01, 01/30/02, 03/01/02, progressing in severity each time. In between these episodes, I experience burning sensations beginning at my ankles, moving up to my knee, weakness in my legs and hands, cold feet and hands, lost libido and hot flashes (on estrogen and testosterone for 3+ years now for hysterectomy), change in urination freq, memory loss, fatigue, blurred vision, etc... Anyway, my rheumatologist recommended a brain biopsy to confirm vasculitis and I went off!! So my primary sent me to the Mayo for a second opinion: I had a 4 hour psychological assessement which I did really well on, passed everything but scored low on 1 memory test, but not out of the range. They did the routine neurological test, walk 5 feet and check your gate, check reflexes, and finger to nose test etc... and everything is fine. This doctor told me there is nothing going on with my brain, there is no neurological or vascular problem (but I do have FMD, which is vascular!) When I asked if it could be related to my degenerative disc desease (spinal fusion 7 years ago L4&5) he said "no back doctor can fix this", when I asked about the Neurontin, he said "better stay on it for the headache, since it seems to be working, Neurontin is not a pain med, we use it for the burning etc..." well obviously, it's not working for that problem. So I asked through my tears, what kind of doctor, or tests do I need to find the cause of these problems, since it is nothing neurological, he said "I don't know! You've had about every test!" And his parting words were "I know I sound cruel, I don't mean to be, Good Luck!" Then he had the nurse give me this great bag to lug my reports and imaging home!!!
Thank you, maybe I have to find a "it's all in your head, but not from a neurological standpoint" forum... any good leads?? Any insight or direction would be greatly appreciated.
Brenda
August 2001, extreme headache that could not be relieved with narcotics... angiogram of the brain showed a dissection in the left carotid artery. Put on Neurontin and Plavix to prevent stroke. Continued to increase the dosage of Neurontin to relieve the headaches, currently at 2700mg per day. On 12/10/01 taken to ER with symptoms of stroke, numbness and prickly sensation started at feet and progressed to face, spasms in left leg, arm, and eye. Couldn't walk, left leg too weak, got a little better over night. Hospital did MRI and LP and released me. Since 9/01 I have about $80,000 worth of imaging. MRI/MRA/MRV of brain and neck, regular MRIs, CTs, 2 angiograms, plus 2 LP, 3 full blood workups, 2 EEGs, EMG, everything pretty normal except the angiograms showing the dissection and the MRIs showing at least 12 lesions.
I have had 3 of these "episodes" in total; 12/10/01, 01/30/02, 03/01/02, progressing in severity each time. In between these episodes, I experience burning sensations beginning at my ankles, moving up to my knee, weakness in my legs and hands, cold feet and hands, lost libido and hot flashes (on estrogen and testosterone for 3+ years now for hysterectomy), change in urination freq, memory loss, fatigue, blurred vision, etc... Anyway, my rheumatologist recommended a brain biopsy to confirm vasculitis and I went off!! So my primary sent me to the Mayo for a second opinion: I had a 4 hour psychological assessement which I did really well on, passed everything but scored low on 1 memory test, but not out of the range. They did the routine neurological test, walk 5 feet and check your gate, check reflexes, and finger to nose test etc... and everything is fine. This doctor told me there is nothing going on with my brain, there is no neurological or vascular problem (but I do have FMD, which is vascular!) When I asked if it could be related to my degenerative disc desease (spinal fusion 7 years ago L4&5) he said "no back doctor can fix this", when I asked about the Neurontin, he said "better stay on it for the headache, since it seems to be working, Neurontin is not a pain med, we use it for the burning etc..." well obviously, it's not working for that problem. So I asked through my tears, what kind of doctor, or tests do I need to find the cause of these problems, since it is nothing neurological, he said "I don't know! You've had about every test!" And his parting words were "I know I sound cruel, I don't mean to be, Good Luck!" Then he had the nurse give me this great bag to lug my reports and imaging home!!!
Thank you, maybe I have to find a "it's all in your head, but not from a neurological standpoint" forum... any good leads?? Any insight or direction would be greatly appreciated.
Brenda
I started taking Remeron three months ago and immediately after I started taking the medication I started seeing flashes of light, floaters, ans wavy lines. I have seen them 24hrs a day every since I started the medicaiton. I also started taking Effexor and it made the floaters etc..worse. I have been off the Remeron for 6 days and the Effexor for 2 and I am still seeing these visual disturbances. I have been examined three times by two different eye doctors and they both say my eyes are fine. My regular doctor has done a complete blood examine and everything is normal except for a positive ANA. It is at a low titer of 1:160. I have seen the Reumotologist five times and explained to him what was going on and he says I do not have Lupus or anything else. I have had a neck and back xray to rule out pinched nerve. I have sevre anxiety and I am now taking Paxil. Does anyone have any information about this? Has anyone ever experienced these visual disturbances constantly. What shoud I do? I have no headaches and my vision is fine. Could these visual disturbances be from a brain tumor or something else? Please reply. I am very worried and any input would be greatly appricitated. Sorry for the misspelled words.
I started taking Remeron three months ago and immediately after I started taking the medication I started seeing flashes of light, floaters, ans wavy lines. I have seen them 24hrs a day every since I started the medicaiton. I also started taking Effexor and it made the floaters etc..worse. I have been off the Remeron for 6 days and the Effexor for 2 and I am still seeing these visual disturbances. I have been examined three times by two different eye doctors and they both say my eyes are fine. My regular doctor has done a complete blood examine and everything is normal except for a positive ANA. It is at a low titer of 1:160. I have seen the Reumotologist five times and explained to him what was going on and he says I do not have Lupus or anything else. I have had a neck and back xray to rule out pinched nerve. I have sevre anxiety and I am now taking Paxil. Does anyone have any information about this? Has anyone ever experienced these visual disturbances constantly. What shoud I do? I have no headaches and my vision is fine. Could these visual disturbances be from a brain tumor or something else? Please reply. I am very worried and any input would be greatly appricitated. Sorry for the misspelled words.
To: CCF-Neuro-M.D.-JT and forum members... My son is epileptic.. had only absence seizures for last 5 years, suddenly in December and since has had 4 grand mal. My niece has had grand mal seizures 15 of her 17 years. Could this make me predisposed to either seizures, epilepsy, or other neurological disorders? I'm 41 and all of this started recently 9/01, no previous history. I just became curious at the mention of an "epilepsy unit" in your reply. Thank you very much for the information and the reply, I rally appreciate it.
Sincerely,
Brenda
Sincerely,
Brenda
Sorry to hear about your symptoms. It's impossible to give an accurate diagnosis without personally reviewing your films and examining you. Sounds like you have had an extensive diagnostic workup and I'm glad that everything outside of the MRI and angio is normal. The episodes don't sound like they're coming from your spine. It would be important for a neurologist to be able to observe one of your episodes to evaluate you for any objective evidence of a neurological cause. One thing to consider would be video EEG monitoring in an epilepsy unit in an attempt to "capture" one of the episodes. You would be hooked up to a monitor 24hrs/day for a few days until you had an episode. Seeing as how they are rather infrequent (once/month?), it may be difficult and rather costly. But it's something to consider. Good luck.
Brenda:
2 years ago I also had a left carotid artery dissection. The doc's put me on a blood thinner and sent me home. 2 months later I began developing episodes of pressure in the back of my neck/head. With this pressure I also get strange cold sensations in my hands and feet. Weakness in my legs and arms, blurred vision, flashes of light in my vision, numbess in my face, dizzeness etc.... The doc's thought migraines and put me on many migraine meds that did not help. I conducted a lot of research and came up with intercranial hypertension. The Doc's told me no because I do not have swelling of the optic nerves however they finally said "I do not know" and agreed to try Diamox the medication that is used to treat it. It helped considerably so they ordered a LP and the pressure was slightly elavated. You stated that they did several LP's but did they ever check the opening pressure? This condition is overlooked by many doc's and the symptoms vary. If the pressure was not checked it may be worth trying Diamox. Good Luck!
2 years ago I also had a left carotid artery dissection. The doc's put me on a blood thinner and sent me home. 2 months later I began developing episodes of pressure in the back of my neck/head. With this pressure I also get strange cold sensations in my hands and feet. Weakness in my legs and arms, blurred vision, flashes of light in my vision, numbess in my face, dizzeness etc.... The doc's thought migraines and put me on many migraine meds that did not help. I conducted a lot of research and came up with intercranial hypertension. The Doc's told me no because I do not have swelling of the optic nerves however they finally said "I do not know" and agreed to try Diamox the medication that is used to treat it. It helped considerably so they ordered a LP and the pressure was slightly elavated. You stated that they did several LP's but did they ever check the opening pressure? This condition is overlooked by many doc's and the symptoms vary. If the pressure was not checked it may be worth trying Diamox. Good Luck!
msb - Thank you for the reply... the opening pressure on the latest LP results were normal. I can now add another condition to my list of off-the-wall questions for my doctor.
thanks again
thanks again
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