In and Out of Limbo
Posted: Fri Jun 02, 2017 7:10 am
Hello all. Like many here I am currently having symptoms but no diagnosis. However, after looking at some of the other posts in this thread, my path seems a bit different.
I first started having symptoms only 9 months ago. It started as a tingling feeling in both feet & ankles. I let this go for about 3 weeks before I went to a walk in clinic, figuring I either had slipped disk in my back ( causing a pinched nerve) or something simple. It was from this one visit that I was referred to a neurologist. The Dr. who saw me at the clinic didn't like that it was both feet at the same time, and though it would be neurological.
I saw the first neurologist shortly after. At this time, about 2 months in, my symptoms had increased to a dull pain in both feet up to my knees, with tingling & numbness in my feet and ankles. The neurologist ordered bloodwork and an MRI to see what was going on. While waiting for the results I had my first fall while walking my dog. I feel backwards on my left side, but given that the weather was colder, and ice was already on the ground, i blamed it on that. Following up with the neurologist, she caught me off guard by mentioning the possibility of MS. The mri had shown a lesion on my brain stem ( my Pons) and abnormal whitematter layering ( still not sure what that means) in spots. This neurologist set me up for another MRI, and a LP.
Between this appointment and the LP the pain in my legs had increased and I feel about 3 more times, all to my left. One was in my living room on carpeted floor, so I couldn't blame it on ice anymore. I had the LP in January of this year, and it came back clear, no O-bands or anything out of the ordinary. Blood work also came back clean for Lyme, ANA, Syphilis, and Sjogren's Syndrome. The neurologist decided to test my Vitamin B and D. B6 came back a little high, so I was advised to stop taking my multivitamin ( the only thing I regularly took at the time, clean bill of health prior to this). This neurologist also felt stumped, and got a second opinion on my MRI's with a college, who did not believe the spot on my Pons was infact a lesion, and believe I was having issues with Small Fiber Neuropathy. So i was referred to a specialist for neuropathy.
As a few more weeks go by between my last visit with this neurologist and the new one, my symptoms increase again. The pain in my legs is now a 5-6 out of 10 and i am physically limping when walking. Im also starting to suffer mild 'cognitive fogs" ( forgetfulness, pauses in my speech, problems focusing) and dealing with major body fatigue. The new neurologist retests my vitamin B6 and the results are normal. She does not believe that is the issue. However, this neurologist does not have any of my referral or previous notes/results from the other neurologist, so this first visit is me re-expalining everything. However, in looking me over, she concludes I have sever weakness in my left leg, and my left arm ( which up to now had been feeling fine). 2 weeks later I see her again ( now on Gabapenten, 300mg for the pain) and thankfully she has all my medical notes so far. She reviews and once more states she believes this is an early sign of MS. Per her reading of my MRI and the radiologists notes, there are multiple lesions on my brainstem and tells me 'you do not have a healthy brain for a 32 year old man".
She suggests a folding cane for help with stairs and refers me again ( her specialty is small fiber nerves, not CNS) to the MS center of NY ( my home state) and an MS neuro-specialist.up before hand. He needs to review your case before he will accept and make an appointment. While waiting for this appointment, I start having issues with my left hand. I had developed a numb/painful feeling from the elbow down to my fingers (best way I can describe it is hitting your funny bone) on the outside of my hand and am using the folding cane all the time. I also start dropping things in that hand.
He sees me on a friday, and does the usual gate test, checks my vision, and the strength in my limbs. Then, he surprises me and my wife ( who came with me) by saying he strongly beleives I have NMO ( though he called it Devics Disease as well), despite my eyes having no pain or vision issues throughout all this ( no headaches either). He states he beleives it's the first attack of NMO, though there is still a chance it is early MS, and wants to get me going on IV steroid infusions that day. So over the course of 5 days (mon-tues) i have an infusion of 1000mg of steroids a day ( IV of 100mg on friday, 900mg of prednisone on sat & sun, and two more IV infusions mon & tues). He also orders more blood work to check for NMO-antibodies, an MRI on monday with & without contrast, and a visit with a Neuro-opthamologist.
Safe to say, with all that in my blood stream I felt great and many of my symptoms disappeared. I was walking without the cane, though stiffly and not too quickly, did not have any cognitive fog, and my lest arm felt normal ( though leg and arm were still weak, the pain was gone). THe MRI's came back looking good, no new lesions anywhere's and it even looked like the lesion on my pons was doing a bit better ( not fully sure what this means either). The eye exam goes through with no signs of issues with my optic nerves, and blood work comes back fine.
So he takes NMO off the table and..... now we wait. Currently, i am using a cane per his suggestions for now, though moving much better than I had been. Cognitive functions are still good, though pain and tingling is coming back in my legs and left arm. I don;t really have a diagnosis at the moment, just orders to go on a glutten & dairy free diet for the next 3-months, follow up with him in August, and call them the moment any new symptoms pop up, or my symptoms come back big time ( The pain and weakness are to be expected, I guess, given the nature of my lesion). I did call the other day to report that my arm, which had been fine, is starting to act up again, and my legs are still sore. I'm waiting a call back as he decides if he wants me to try PT, a new med ( currently just on Vitamin D and Gabapentin) or come in for another eval.
I know it isn't as long a time as others have had to put up with symptoms without a diagnosis, but it's been very frustrating to have deteriorated that fast, have the hopes of a diagnosis in sight, and then be left playing the waiting game.
I first started having symptoms only 9 months ago. It started as a tingling feeling in both feet & ankles. I let this go for about 3 weeks before I went to a walk in clinic, figuring I either had slipped disk in my back ( causing a pinched nerve) or something simple. It was from this one visit that I was referred to a neurologist. The Dr. who saw me at the clinic didn't like that it was both feet at the same time, and though it would be neurological.
I saw the first neurologist shortly after. At this time, about 2 months in, my symptoms had increased to a dull pain in both feet up to my knees, with tingling & numbness in my feet and ankles. The neurologist ordered bloodwork and an MRI to see what was going on. While waiting for the results I had my first fall while walking my dog. I feel backwards on my left side, but given that the weather was colder, and ice was already on the ground, i blamed it on that. Following up with the neurologist, she caught me off guard by mentioning the possibility of MS. The mri had shown a lesion on my brain stem ( my Pons) and abnormal whitematter layering ( still not sure what that means) in spots. This neurologist set me up for another MRI, and a LP.
Between this appointment and the LP the pain in my legs had increased and I feel about 3 more times, all to my left. One was in my living room on carpeted floor, so I couldn't blame it on ice anymore. I had the LP in January of this year, and it came back clear, no O-bands or anything out of the ordinary. Blood work also came back clean for Lyme, ANA, Syphilis, and Sjogren's Syndrome. The neurologist decided to test my Vitamin B and D. B6 came back a little high, so I was advised to stop taking my multivitamin ( the only thing I regularly took at the time, clean bill of health prior to this). This neurologist also felt stumped, and got a second opinion on my MRI's with a college, who did not believe the spot on my Pons was infact a lesion, and believe I was having issues with Small Fiber Neuropathy. So i was referred to a specialist for neuropathy.
As a few more weeks go by between my last visit with this neurologist and the new one, my symptoms increase again. The pain in my legs is now a 5-6 out of 10 and i am physically limping when walking. Im also starting to suffer mild 'cognitive fogs" ( forgetfulness, pauses in my speech, problems focusing) and dealing with major body fatigue. The new neurologist retests my vitamin B6 and the results are normal. She does not believe that is the issue. However, this neurologist does not have any of my referral or previous notes/results from the other neurologist, so this first visit is me re-expalining everything. However, in looking me over, she concludes I have sever weakness in my left leg, and my left arm ( which up to now had been feeling fine). 2 weeks later I see her again ( now on Gabapenten, 300mg for the pain) and thankfully she has all my medical notes so far. She reviews and once more states she believes this is an early sign of MS. Per her reading of my MRI and the radiologists notes, there are multiple lesions on my brainstem and tells me 'you do not have a healthy brain for a 32 year old man".
She suggests a folding cane for help with stairs and refers me again ( her specialty is small fiber nerves, not CNS) to the MS center of NY ( my home state) and an MS neuro-specialist.up before hand. He needs to review your case before he will accept and make an appointment. While waiting for this appointment, I start having issues with my left hand. I had developed a numb/painful feeling from the elbow down to my fingers (best way I can describe it is hitting your funny bone) on the outside of my hand and am using the folding cane all the time. I also start dropping things in that hand.
He sees me on a friday, and does the usual gate test, checks my vision, and the strength in my limbs. Then, he surprises me and my wife ( who came with me) by saying he strongly beleives I have NMO ( though he called it Devics Disease as well), despite my eyes having no pain or vision issues throughout all this ( no headaches either). He states he beleives it's the first attack of NMO, though there is still a chance it is early MS, and wants to get me going on IV steroid infusions that day. So over the course of 5 days (mon-tues) i have an infusion of 1000mg of steroids a day ( IV of 100mg on friday, 900mg of prednisone on sat & sun, and two more IV infusions mon & tues). He also orders more blood work to check for NMO-antibodies, an MRI on monday with & without contrast, and a visit with a Neuro-opthamologist.
Safe to say, with all that in my blood stream I felt great and many of my symptoms disappeared. I was walking without the cane, though stiffly and not too quickly, did not have any cognitive fog, and my lest arm felt normal ( though leg and arm were still weak, the pain was gone). THe MRI's came back looking good, no new lesions anywhere's and it even looked like the lesion on my pons was doing a bit better ( not fully sure what this means either). The eye exam goes through with no signs of issues with my optic nerves, and blood work comes back fine.
So he takes NMO off the table and..... now we wait. Currently, i am using a cane per his suggestions for now, though moving much better than I had been. Cognitive functions are still good, though pain and tingling is coming back in my legs and left arm. I don;t really have a diagnosis at the moment, just orders to go on a glutten & dairy free diet for the next 3-months, follow up with him in August, and call them the moment any new symptoms pop up, or my symptoms come back big time ( The pain and weakness are to be expected, I guess, given the nature of my lesion). I did call the other day to report that my arm, which had been fine, is starting to act up again, and my legs are still sore. I'm waiting a call back as he decides if he wants me to try PT, a new med ( currently just on Vitamin D and Gabapentin) or come in for another eval.
I know it isn't as long a time as others have had to put up with symptoms without a diagnosis, but it's been very frustrating to have deteriorated that fast, have the hopes of a diagnosis in sight, and then be left playing the waiting game.